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. Today I am joined by parents Emily and
Stuart from Journey to Autism and I particularly
wanted this couple on because their little one
is starting school in September and also Emily
comes from a background of mainstream teacher
and SENCO and I just think that dynamic is really
interesting from supporting at school to supporting
as a parent because it is a very different role
and I thought you'd be interested in that. Welcome
Emily and Stuart. Hey, nice to be on. Of course.
When I heard about your different roles that
you play within the SEN space, I was really intrigued
as to how that plays out with your journey as
a parent and supporting your child. So what does
your family dynamic look like, I suppose? Let's
start there. So it's just us and Noah. So Noah
literally turned four last month. And like you
say, he is starting school in September, which
is very scary, but exciting as well, actually.
So he's diagnosed autistic, is that right? Yeah.
Yeah. And does he only recently just got his
diagnosis or how did that come about? So he was
diagnosed the week he turned three. So basically
a year ago, kind of to this day, probably around
now, we started the journey to diagnosis. I kind
of... We always felt that something was a bit
different and we sort of saw that from probably
day dot, didn't we? I remember we said like,
why is everything so tricky? When we were like,
everything is just challenging. And then it was
around 18 months that we kind of got a letter
in with the GP and then that started the diagnosis
journey. And then, yeah, when he turned three,
he was diagnosed with autism and global development
delay as well. What kind of things were you seeing?
Pre -18 months. Sleep? Yeah. Okay, so lack of
sleep. I'm seeing lack of sleep, even this morning.
Yeah, sleep's always been a thing. Just, I think,
also, like, we didn't necessarily know it then
as much, but kind of sensory differences. He
was always on the go. Even as, like, a really,
really newborn, he was so alert. Would never,
like, sit still, would always be wriggling, would
go on his pram. Yeah. Just kind of, not irritable.
But very kind of... Yeah, because he was always
quite a happy baby, actually. And he's still
pretty happy, apart from when he's dysregulated
now. But yeah, he was just, I'd say... Always
wanting something. Always needing something.
Always very alert. Like, everything that kind
of might just come with time never did. And we
were like, oh, this is tricky. And we knew, obviously,
any parenting is going to be challenging. But
it just felt that bit trickier. Yeah, so I think
it was that kind of social interaction was always
slightly different. I wouldn't say he's ever
kind of been, you hear that phrase, don't you,
in his own world. And I wouldn't say he is really
in his own world. He wants to kind of interact
with us and wants to show us things he's interested
in. But on his terms, always on his terms. And
like based on his interests, animals are his
thing. So everything we do. Yeah, ARFID. So he's
not diagnosed with ARFID. it is basically they've
put probable arthage because there isn't a team
near us that diagnose yeah it's quite common
his age yeah yeah i've seen you've had um here
before haven't you about arthage and it's a whole
that's probably that's probably the biggest thing
And they're most stressful, isn't it? As a parent
for your child not to be eating. And I think
like with other things you can kind of, I don't
know, seek support and put things in place. And
like we've always been quite, and probably from
my teacher background, like quite on board with
like putting in different speech and language
things, different sensory things like messy play.
But with ARFID, it's kind of a whole new ballgame
because actually what you would do for a picky
eater really doesn't work for a child with ARFID.
And it's constant worry, isn't it? Constant every
single day. I find that the hardest thing. So
when we go to sleep, has he eaten enough? Have
we done enough? Has he been exposed to enough
things? How many of his certain foods that he
likes has he eaten? I'm like, we're down to two
at the minute. But even like kind of early signs,
like even when we started the weaning journey,
he never kind of accepted foods like a typical
child, if you like. And it's all very kind of
sensory based. But then he's got a lot of allergies
as well. So potentially. So hard, isn't it? Not
trauma, but kind of. where he has experienced
a reaction and then yeah he'll relate that food
to that ill feeling won't he yeah he definitely
does he's got a really really good memory there's
a few little challenges that we've got yeah as
first -time parents though were you doubting
yourself like is it is he you know autistic or
or is are we just seeing things is it just us
because you have no siblings to prepare to Doubted
ourselves. We just thought, my God, we just don't
get it right. Yeah, is this normal? Is this how
parenting is? I remember Stuart saying to me
really early on, he's like, surely this is what
everyone goes through. Like, there was no sleep
and you can't just give him a biscuit and he'll
sit in front of the telly. You couldn't do that.
No, no. There was always seemed to be some...
issue obstacle yeah yeah I think like I think
I think we I definitely kind of up until the
age of one I remember saying to my mum for example
and to Stuart and my dad like oh you don't think
he's autistic do you And I would just kind of
say it, but didn't actually necessarily think
that was the case until he probably was around
one. And then I think I was uncertain. But I
was in denial. Yeah, sure. Were you? Can we talk
about that? Are you okay to talk about that,
Stuart? Because I think that's really common
for one parent and the other, especially with
your same background, Emily. I can imagine that
you were kind of prepared for it. You knew what
autism meant in a family. I'd say exactly that.
I think also like knowledge is power, isn't it?
And like actually... The unknown is what's scary.
So a lot of autism, to me, I don't see it in
any way a negative thing. It's just a different
thing. Whereas I think when you don't have so
much kind of understanding or kind of background
in it, it is really scary. And like there definitely
has been times where I've felt scary too. But
you'd heard about it. You'd seen children with
it. Whereas I kind of had heard it fleetingly
and it was like this big kind of all -compassing,
all -scary kind of, I don't want that. Absolutely.
And there's lots of misconceptions, isn't there?
I mean, you said one perfectly, that he isn't
lost in his world. Actually, he seeks out interaction.
And I'm guessing those thoughts of those misconceptions
of autism are playing on your mind. Well, he
can't because he seeks out cuddles and I don't
know. To be honest, like, I wouldn't exactly
say I'm 100 % like... Embracing? Uncomfortable.
Do you know what I mean? I think that's really
honest. I don't think that's really honest. And
I think as a parent as well, like, although we're
fairly, I would say, quite open about how we
feel about things. And I think actually that's
kind of beneficial to other people. But like
when people say, oh, would you change it? And
actually I wouldn't ever change Noah, but I would
100 % change a lot of the things that he finds
really challenging every day. If I could take
away his fear of food, I would. Like, why wouldn't
I? It is so tricky for him. And it's hard for
us, but one thing that you say constantly is...
I know what you're going to say. Think about
him. Well, how is he feeling? And how is he looking
at it? And that is something that kind of really
resonates with me. And I think, yeah, God, I'm
having a tough time. He's the one. He's only
four. He's trying to communicate and do all these
things, but he can't. So it's like, yeah, that
really does put it into perspective. I just think
like when he's dysregulated or he's pretty much
non -speaking, he'll say a few words, but basically
animal words, animal names. pretty much um he
loves animals we're surrounded by animals he'll
say wildebeest but he wouldn't say cookie i love
autism for that i love that Noah's first word
was bonjour from Peppa Pig. And then second word
was dinosaur. Wow. Isn't it incredible? I just
think they're just amazing, aren't they? I do
love how you totally see everything through a
different lens, like being a parent of an autistic
child. But that doesn't take away from the fact
that it is really, really tough. And I think...
And quite a lot of it's kind of in silence. Yeah.
Like he appears like a normal, normal kid. to
some extent and then it's like people don't see
like behind closed doors he'll go into it he'll
do this he'll do that is that what you're hearing
especially in the early days were you hearing
less so now but I think that's not people saying
it in a bad sense it's just for me you mentioned
autism now I know a reasonable amount but before
it's like you you want to say something so and
you want to kind of normalize it so it's that
sort of phrase is like well we're trying to connect
not that it not that we take offense but it's
like that completely is not true it's like so
far like with everything like with um with the
speaking for example everyone be like oh oh and
the sleep like oh when he gets to two i'm sure
he'll sleep then when he gets to two and a half
i'm sure he'll start talking it was three months
wasn't it three months get to three months get
to six months Then it was 18 months and now we're
still four years in. And that's not helpful,
is it? So what would have been helpful to hear
in those early days from those around you? I
think it's people, and again, like you said,
it's not people trying to do it in a negative
way. I don't think it comes from a negative place
at all. No, it doesn't. But I think what actually
is probably most helpful is people just listening
and almost affirming, that must be really tough.
Like, is there anything I can do to help? And
not always trying to... say oh it's okay or he'll
do it in a minute because that just diminishes
like your experience i think actually saying
it's it's tough it's tough yeah and oh my goodness
like I kind of appreciate what you're going through.
And, like, also, people say, I can't imagine,
like, tell me about that. Like, wanting, and
to be fair, like, our families, our friends are
fab because they do want to learn more. Everyone's
very, like, neuroaffirming. That's why you started
your own. Yeah, and that's kind of why I started
Journey to Autism, actually, because we don't
have... diagnosed autism in our families or neurodiversity
that we know of and in our friendship groups
there aren't children who have diagnosis so it
was really lonely as a parent and unless you're
living it like that's why I guess we're like
so close and each other's rock because unless
you're living it you can't imagine you have to
be strong I can't imagine I just don't think
I would cope on my own like yes we argue and
we bicker and but the sort of forefront is the
sprint because you'd be able to do it if there
wasn't both like both of us big respect to yeah
single parents single parents like amazing wow
so that was kind of the the reason for the journey
to Austin really was to connect with other people
in similar situations and also I felt like I
learned more from people who have been through
it and people in those similar situations than
any professional unfortunately um and it felt
really tough it was kind of not what can we do
to help from the professionals yeah it was almost
like breaking down barriers and knocking down
doors but not just one you had to knock down
about four yeah try and even get any support
and then when you get something it's not really
that helpful no it's a fight isn't it and I think
unfortunately I wish it was different I wish
I could tell you different unfortunately that
fight is quite repetitive throughout their life
it's It seems to, through lack of funding, lack
of support, lack of locals. And it's not against
anybody who's in the profession trying to help.
No, it's not individuals. It's like a blanket
umbrella systemic issue, isn't it? And that's
what we found. And even like, again, I guess
because we are quite open, we've had those conversations
with... different professionals we come into
contact with and they definitely feel the same
frustrations as us they're like we wish we could
do more like or oh we used to offer this support
but unfortunately there's no commissioning for
it anymore and it's just like this is mad and
everything's about early intervention and like
all my professional training is about early intervention
and the importance of that and then even like
from a family who have kind of been fighting
from 18 months of age and with knowledge behind
us to support kind of us to get that support
it's still still really easy and how do families
do it without that background of literally em
comes out with these massive big words and i'm
like i just don't have a clue yeah if you didn't
know the protocol if you didn't know those what
those acronyms men if you didn't know what what
offers were out there, how would families navigate
it? And you sort of close the door and because,
especially with Noah, this is kind of his safe
space, you kind of almost want to block everything
out and it is a struggle to go out the door.
It is worth reiterating that there are other
people going through. They're just unseen. And
it is good to talk. Social media is great. for
that as well and it's like don't get stuck because
i i was depressed wasn't i probably yeah probably
still am like as i said i'm still coming to terms
with everything it's yeah it's tough it really
is tough like yeah just go away because you can't
fix it you can't you can't control it it just
is and i think that that will stem into some
mental health because it's not like oh just go
and exercise or just go and drink this thing
and actually it works it's like no this This
is it. And actually, you can't control what support
you get. You can't control how hard the fight
is. You can't control what school he goes to.
It's so little control, and yet you care so much
about him that you just want to do everything
you can. And that, of course, brings you into
a place of feeling out of control. And I think
that's really hard because, like... kind of in
our jobs in the rest of our life I would say
we kind of have stuff together like we are quite
in control people and that's definitely my coping
mechanism is to feel in control to try and learn
as much as possible and that's how I cope with
it and to talk and to kind of share but you're
so right because actually you can do everything
that someone tells you is the right thing to
do with Noah and then Noah might have his own
agenda and it will not work and it's kind of
I think like the biggest thing for me is It's
like that acceptance. And actually, and I think
like you... Being like focused by him. Being
led by him. And we've gone out the door. He won't
put his shoes on. So he's got him in the car.
He won't go to his car seat. And we've sat there.
No joke for like an hour. He won't go in his
car seat. Doesn't want to go inside. And you
just have to be led by him. And you're kind of
half in tears, crying, laughing, like sad. It's
like, but... that's sort of being led by him
and you just have to and i think you kind of
have your expectation of what parenting is like
this i would say has been a big thing for us
is like we have that expectation of what parenting
would be like and actually i mean naively we
hadn't even thought about parenting a neurodiverse
child because neurodivergent child because actually
there was nothing in our family to suggest that
that would be the case and and then actually
what you think parenting is going to be like
and how you think you're going to be as a parent
Couldn't be further from what actually life is
like. And timescales, like if you've got to get
somewhere for 11, then more often than not, we
will be late. And it's just... And it's accepting
that, isn't it? I think when people talk about
acceptance, it's not just accepting the child.
You adore the child. That's almost comes naturally
enough as a parent. It's accepting from the family
members, maybe not, but accepting from the parents,
usually that comes hand in hand with just being
a parent. But it's accepting, yeah, the looks,
being late. The need for support, the need to
fight, the adaptations to the home, the adaptations
on the relationship, your future plans, all of
those things. It's accepting that I think is
a hell of a lot harder than accepting the child.
I think people forget when we're talking about
autism acceptance, it's not just autism exists
or these people exist. It's accepting, I don't
know, I might have to be a little bit late in
the queue or I might have to... not look when
somebody's dysregulated in the street I might
have to lower the lights in my shop even though
it might upset some other customers you know
it's acceptance in all aspects I as we've just
finished acceptance month I think it's quite
important to talk about that maybe what is acceptance
and all the facets that that that that encompasses
I think it's just being open -minded I think
certainly the older generation are very set in
their ways and I came to kind of parenting with
like, well, this is, the child's going to sort
of fit into our lives after a certain amount
of time and then we'll sort of do that. There
is literally... And then Noah came along. And
like, it's, that just completely has blown out
the window. There is nothing normal, day -to
-day, like stereotypical parenting that we...
do really no and actually it's about again accepting
that because yeah we could in like and i think
that's a journey we've been on isn't it like
it's actually picking your battles like our whole
life is eating okay one one example is eating
in the bed i hate that like oh but no he's eating
you couldn't yeah safe i have to put up with
the crumbs and wash it out every day and Do you
find a kind of, there's a hierarchy in your head
of, yes, of course we don't want him in the bed,
but food is more important. It's like a kind
of a category of, okay, yeah, of course we want
him to wear his shoes, but actually we need to
get to this appointment. We need to get to school.
So the shoes come last. Probably what, five months?
No, he didn't wear shoes. Yeah. He could not
tolerate shoes. And it coincided, we kind of
realised after time, with like a flare up of
eczema on his feet. But because he has so many
sensory differences, that slight change of eczema,
which wasn't much at all, but actually he just
couldn't tolerate shoes. And then it was like,
right. And at that point in time, we were like,
how are we going to like continue and just live?
But for, and it was over kind of, it was springtime.
It was probably last year. And he doesn't like
wearing jumpers. So all through the winter, we
kind of had long sleeves. Yeah, he'll wear one
type of top, one type of trousers, and it's long
sleeve top and like. baggy fit leggings and crops
and crops we he'll now wear but like and actually
he will he wouldn't wear a coat we managed to
get a gilet on him didn't we when it was really
cold but that took a lot of kind of um and like
sensory input before and it wasn't easy to get
him to wear that but i think it's just about
accepting that that's what he needs and he isn't
doing it to be difficult he's doing it because
he's not regulated and i find that i find that
tough Yeah. As a parent, you're kind of like...
But you need to give yourself some credit because
actually you say you find it tough, which you
do find it tough, but you do everything he needs.
And it's like you have kind of expected like
rules and boundaries and everything and they're
just completely broken. And they are. And he
has limited, I'd say, understanding of words
as well. So it's not like you can, I mean, you
can't reason with any... You can't negotiate
with him. Yeah. and it's not like you can or
you couldn't and you can't bribe him with like
oh a chocolate or or even explain why it's important
to wear a coat yeah there's not that understanding
there and actually potentially he doesn't feel
I don't think he really feels the cold either
so it's not like he's getting those body messages
either that oh I actually am cold I need a coat
um so it's just I think and patience like that's
been the biggest thing that actually remembering
that phrase that everything passes Which is easier
said than done when you haven't slept for five
years. And I think that is actually like probably
one of the hardest things is the lack of sleep.
Because everything feels worse, doesn't it, when
you're tired? And yeah, but he, I mean, touch
wood, touch wood, I shouldn't say it, but he
is slightly better at sleeping in the last two
weeks. Don't say it. I mean, it's still not great,
but I'm not being woken every hour, so I'll take
that as a win. But yeah, I think, like you say,
kind of every... Like parenting norm, if you
like, or social norm. No, we couldn't care less
about social norms and what we thought we were
going to be like as parents. You don't want to
sort of come across as moaning because if you
ask us, we will probably go, yeah, we're all
right. But actually, we could spend hours about...
how he hadn't slept, how he wouldn't get dressed.
I think that's really important to talk about
because there are so many parents in your shoes.
From National Autistic Society, they say one
in 100 is autistic. It is far more like, well,
one in 10, isn't it? To be neurodivergent or
certainly have sensory regulation needs. There
are so many parents out there that are managing
this alone, together. And social media is a great
connector, as you said before that, of that's
a great idea or we're even all just finding it
difficult together. Just someone else's message
at 4am when you're thinking you're the only person
awake in the world and it's really lonely and
you're really tired. And actually when you then
sort of on there chatting to someone who is in
exactly the same situation, like for example,
so Noah has melatonin. And, I mean, to be fair,
whether it helps or not, who really knows? I
think it does help a little bit. It helps you
get to sleep. It doesn't keep you asleep, I think.
No, exactly. And that's the biggest thing. But
then we got the slow -release tablets. And I
was like, no, I'll be having ARFID and only eating
two foods. I was like, how am I going to get
a tablet in, Tim? But, again, power of social
media, someone showed about, like, using a syringe
with water. I was like, well, a syringe isn't
going to work with Noah because, again, that's
too much demand. But in the end, I was like,
right, I'm going to put the little, because they're
like micro tablets, into his straw in his drink.
And now he drinks it. No problem at all. Doesn't
even know it's there. Just sucks it up. But I
wouldn't have even thought about that had I not
seen that post on social media. And actually,
that's been life changing because I would not
have been able to get that tablet into him had
he not kind of thought of a way in his drink.
So I think, and it's just like those kind of
everyday little tips that actually have such
a big difference. Well, we definitely now know
about the different areas of autism and like
kind of the stereotypical what to do and how
to help. But you quite often find that actually
in the real life where every child is different,
neurodiverse or not, that actually they don't
necessarily work for your child. So it's just
about kind of getting as many tips as you can.
Yeah, and sharing. And like, so at the end of
the month, actually, I'm starting this kind of
parent. support group for parents of neurodivergent
children and that is literally all about just
getting together like crying together whether
that's laughter or kind of tough times sharing
tips like everyone will be at different kind
of stages of their journey I've kind of had like
invaluable support from some of they're actually
parents at the school I work at who have really
helped when I've been through the HCP process
with Noah. And like, until you've done it, you
don't know these things. So then actually, and
then it's too late because you probably aren't
going to do it again. I hadn't even heard of
what an HCP was. Yay, this is it. I still don't
understand what it all is. Luckily, I've done
it. Yeah. But that's true. The support network
can be fantastic. Is it in person or virtual?
So this will be the first meetup and we are going
to do this in person, which will be kind of Colchester
based families and Essex. But then I don't know.
I don't know where it will go, really, whether
it will go into kind of doing virtual events.
I'll probably do some like locally and then some
virtually and whether it will be just socialising
or whether potentially I'll do some kind of sharing
of information as well in the long term. Or like
a chat group or something that you can just informally
message. Exactly. I just think like the power
of kind of community and finding people in a
similar situation to yourselves, that's definitely
helped me more than anything. And I think like
as a dad, like that isn't something you agree.
But I was going to say, females are so good at
that. It's social media and building connections.
How do you feel, Stuart? Do you feel like that
would be helpful to you or that kind of social
media stuff? To be perfectly honest, I'm still
a bit like... whoa I don't know whether I fully
commit to I don't know I guess I guess if I'm
being completely honest it comes down to kind
of an acceptance that my child is not neurotypical
there's still that if I give in if you like then
that's all over and I'm sort of losing sight
but that being said I 100 % I kind of second
feed everything that this one gets. Yeah. But
it's tough. I can't quite explain it, but as
a dad, you're kind of macho and you want the
best and you want this and that and you want
your son or daughter to be the best. And then
you get hit with this wave of autism and neurotypical.
Yeah, global delay. And it's like, oh my God,
what? what is my child going to turn up? Are
they going to have a normal life? And it's kind
of, I don't even. No one can answer that. So
I've worked with 400 plus children, lots and
lots that everything you're describing now, I
can kind of imagine it. And I still can't tell
you what could or couldn't be because. Their
journeys are so different. They say, don't they,
you meet one autistic person, you've known one
autistic person. Every single child I have is
not similar to each other in any or in some ways,
but they really are unique. I'm not just saying
that. And some have gone on to go to college
and have jobs and live semi -independently or
independently and have relationships. And others
haven't. Others live in assisted living or live
at home or live with siblings. Some of them volunteer.
Some of them don't. They have a PA and they go
out for the day. And they all look like Noah
at five. Yeah. So I can't answer the future just
as much as any other person can. And I don't
know if that gives you comfort or not. It's just,
it just is. That's the hardest thing, isn't it?
That's the hardest thing. It's a journey for
Noah and it's a journey for us. And it's just
accepting it. And whether you embrace it full
on straight away or you gradually kind of come
into it and learn and take little bits. I think
for a guy, going to a group is really quite like
frightening. Whether it's a neurodivergent parenting
group. Like you just wouldn't, like normally,
stereotypical, isn't it? Like the dad is normally
full -time work. And then the mum is the one
who's part -time. I know that's not always true.
And you've got your friends and... Yeah, you're
always a bit like that, aren't you? She was always
like, I've got loads of friends. They're great.
I don't need any more friends. But it is true.
Like, they don't get it. No, no, they don't.
And they try, but they can't. Yeah. And I think
that's, for me, why I'm like, I don't think,
and it's no reflection on them as friends, but,
like, parenting a neurotypical child, you just
can't get it. Because, actually, his... unbelievable
some of the things that happen and we're like
oh my god what is happening do you follow stories
about autism he's an essex -based dad yeah yeah
from burnham on crouch and he i think following
him would be really helpful because you don't
have to chat to him in the dms you don't have
to set up a group with him or meet up with him
in person but just following his journey he's
got teenagers now And his boys were probably
very much like Noah at four. Yeah, yeah. It's
just maybe a little bit of an insight and a little
bit of, like, I am not alone in this. That's
it, at your own pace and knowing that there's
things there and people suggest things, but it's
in your own time. Yeah, I think that's probably
been the thing with families throughout the,
like, journey of Noah's life so far is that people
can kind of suggest things or, like... you can
go to different things. But until you are ready
as a person and until you've almost got to that,
I think you, like, do accept that Noah's autistic.
Yeah, yeah. But equally probably would like to
change that, like, if we're being honest. And
I think acceptance is constant. I don't think
acceptance is ever finished. No, for sure. I
think with every day and moment, acceptance has
to... grow and because so much is unknown how
could you ever now accept who he's going to become
when you don't know what that is so I think it
happens daily yearly moment by moment yeah situation
by situation is that acceptance is you know first
of all not accepting and then growing and then
accepting and then there's a new situation not
accepting I think it's consistent acceptance
I think that's another thing that people don't
realize it's just constant Yeah, definitely.
And I think it is like you hit the nail on the
head. It's just so hard because you just don't
know. You don't know what's coming. And I always
say, we spoke about this before. I was like,
I would love a crystal ball. Like a timeline.
To see, right, this is where we're going to get
to. But I don't know whether I would. But you
don't think you would like that. But I would
love that because I would then, I think anyway
I'd like it, but I'd then know, I would know
what we're working towards. Like I would know
the end goal and then I feel like I would then
be easier able to accept that. Whereas Stuart's
like, oh God, no, I'd hate that. I wouldn't want
to like see into the future. But yeah, it is
tricky. I think also when you are so exhausted,
and I have definitely been through this stage,
I didn't want to connect with people because
I was just so tired. You had nothing left. And
I didn't have anything left. And I still definitely
go through times of that where I'm like, oh,
I'm so mentally drained. It's a huge effort.
Yeah. go and put on your kind of happy face and
also they're putting on their stuff onto you
and you're only just managing your own stuff
that's that kind of weird social thing isn't
it of like oh god yeah but they might want me
to help them yeah i can't do that like through
my job like i'm not saying but i've done the
qualification and i've done kind of the acting
role for a bit as well um So a lot of families
at work, if they do have a child who has additional
needs, they will come and talk to me. So I do
that through my job, which then probably means
that I find it easier like in my personal life
too. Whereas I guess like in your role, it's
nothing at all to do with kind of neurodiversity
or like parenting. So actually that's so different
that that is kind of far removed from like your
norm maybe. And that's why. it isn't necessarily
something that you find. But then equally, we
have had conversations where Stuart's like, oh,
like they just totally don't get it. Or it's
really sad because like the guys are talking
about their children doing this. Like, and that's
so different to Noah, like with bikes, wasn't
it? Yeah. Yeah. Like both of my good friends
have got similar age kids to Noah and they were
talking about riding a bike or, and it was like,
I was just like, I'm just so far removed from
this conversation because. Yeah. Yeah, and those
conversations are going to sting, no matter how
much you love and accept your child. Nothing
on them or nothing. It's just that reminder,
isn't it, of what milestones he may or may not
reach. And he certainly isn't reaching now. And
like, and it is, I think I almost, although I
say I'm really accepting, sometimes I just don't
think about it. Like, that's probably my coping
as well. I can't think about it too much. um
on a like personal mummy level because that's
too emotional and too tricky but actually i can
think about it on like a not on a professional
level but almost on a like so you go into your
like this is how we're going to do this is what
we're going to do this is what our strategies
we've got to use i think i do that don't i otherwise
you just break down yeah i think so too and sometimes
too it's like oh that's like a really like matter
of fact matter of fact way of thinking and talking
about it but i'm not trying to do that i think
it's just my coping mechanism yeah not even knowing
it's your safety zone isn't it because that's
what you know that's what you're comfortable
with that's what you're confident in that's what
you're trained in it makes sense so much sense
that you would go to that place because it's
where you're comfortable it's where you're used
to it's where you roam the place doing all sorts
and crying and shouting and running away and
yeah it's all of it but it's all it's all it
just is yeah isn't it It's the accepting and
the accepting of the moment, accepting of the
second and knowing. Accepting the parent that
you are as well. Acceptance, not just of them,
but of yourself. Like this is the dad I am. Yeah.
And you can't get hung up on, I'm a bad parent.
I'm not a. And I think like probably one thing
that we've really learned, but it's still so
hard, is like not to care too much about what
other people think. When Noah's literally like
throwing himself to the floor or like... Throwing
a chair over. And he looks normal. He looks like
a neurotypical child. And he looks like he's
just being a... like having a tantrum basically
but actually they don't know that he's got all
of these things going on that he's obsessed with
something and fixated on it and he can't communicate
what it is that he wants and actually what we've
learned definitely through basically doing everything
is that trying to stay calm and regulate with
him is so much more successful and helps him
but equally we know that And I would share that
with families at work and that that's really
important and tell Stuart, like, we need to do
this. But actually, when you're in the minute
and you've had no sleep and it's like the fifth
meltdown of the day and you know that actually
the problem is that he hasn't eaten for hours
because he's scared of food and then doesn't
know that he's hungry. And he's holding a biscuit
for four hours in his hand. It's not always easy
to stay calm. equally that's just parenting isn't
it because we're human and we're not robots and
you can know all the things you can read all
the books you can follow all the social media
accounts and ultimately we are just human and
they are just our children and yeah ultimately
that comes down to the like nature side of things
doesn't it and to accept in that moment as well
that I accept that I'm tired I accept that I
reacted How I didn't want to, I accept that.
You know, it's all of that, isn't it? And also
just like that we don't always know what's best.
Like that's definitely been something that like
going back to kind of him starting school, I
was so conflicted about what I thought. And like,
realistically, whatever you think, Em, because
I'm in education. So I was like, I don't know.
Like, I don't know whether I think he needs a
specialist setting, whether I think he needs
a kind of unit or whether I think he's better
in mainstream initially. And I didn't even really
know what. all of these different options what
it even looked like yeah and i found that so
um so difficult like to challenge again and that
partly was difficult because i was in education
so i feel like i should know um but then equally
partly difficult because you're just thrown into
this like all of a sudden you're a child this
age and it's like this is a really really big
decision And he's also changing daily. And he's
changing, yeah. We're like, oh, he's only three
at this point. Yeah, and at that point also you
don't want to say that he can or can't ever achieve
anything and are we going to hold him back? Are
we going to put him in a situation where he can't
or he's left out? Yeah. Our parents have their
opinion on what they thought was best. You were
kind of like, basically... You didn't know, did
you? No, we went to see about... Sometimes it
depends what the local offer is as well. Like,
you could have a special needs school right next
to you that... really isn't appropriate just
how so happens the cohort that year are really
different from your child i don't know maybe
your child is sound sensitive and they're just
a really busy loud group it could be the perfect
school the perfect class the perfect teacher
but just that cohort just doesn't work for your
child so it really really is so individualized
so difficult that was so difficult um and i'm
still worried about how is he how is he Yeah,
can we talk about that? Because obviously with
Arfid as well, like, there's a lot of, there
must be a lot of anxiety about school, starting
school. How is he going to wear a school? He's
not good. And in his EHCP, it's written in that
actually, like, reasonable adjustments, basically
he doesn't have to wear a school uniform. But
then I'm worried about what other children, and
I perceive him, and is he going to be kind of,
you know what I mean? All that sort of aspect.
Yeah, there's a lot of fear. Yeah. And I think,
like, you... And sometimes, again, this goes
back to being tired all the time. I actually
have the answers to those questions, but because
we're so tired, we just haven't actually spoken
about it. And it's like, because I guess, and
that was kind of why I felt so much, what's the
word, like pressure almost about getting the
HCP right was because I knew that actually this
document is so important to make sure that we
can give him as much chance as possible to thrive.
But then equally, it's like, oh, gosh, like,
that's so much pressure to make sure that you're
getting everything into it that needs to be in
there. And you're wonderful for that because,
like, I literally wouldn't have a clue. And I
just feel so, like, that's so difficult, isn't
it, for families who don't have so much money.
But it does get reviewed every year, and that's
why, I think, isn't it, so that you can have
it all initially or you can build it up as things
happen. So it's okay either way. And the children
change, don't they? Yeah. be reviewed but equally
as a parent you want to do everything you can
don't you to to make your child's life as easy
as possible and he so he goes to nursery two
days a week he still doesn't when there's lunch
times he still doesn't really sometimes he sits
but not very normally he's like and he kind of
goes in another room so that's another kind of
point of oh how's he gonna how's he gonna be
also the speaking like it's coming on but it's
very slow so How is he going to get his point
across other than kicking and screaming? Yeah,
yeah. These are all such, such useful questions
to be asking. And others are just going to care.
But I know that they will because Emily's there.
But if he was just being shipped off to another,
like you're giving your kind of like... And you
are experts in him. You know what these little
eye movements mean, what his little hand movements
mean. You know him inside and out. So to be able
to trust your precious, like you said, your precious
child with people, with strangers that don't
know him, don't know his triggers, don't know
how to calm him. Oh, this means this, this means
this, you know. I mean, what my advice is as
a teacher is don't worry about being that parent.
write everything down, fill in the homeschool
book. If you want to send him in on the first
day or in the transition day with A4 pieces of
paper with everything that he does and why, if
that's you, do it. Don't worry about being that
parent. Don't worry about calling up. Don't worry
about staying at the gate. Don't worry about
being that parent. So going from two days to
five days. Right. How is he going to cope? And
then we also know sometimes when he's come back
from nursery, he's pretty dysregulated, like
he kind of shows his emotion. So how's that going
to cope? And also he does a longer day in terms
of that nursery and then he's now finishing half
three. So we're like, how are we going to deal
with childcare? How are we going to deal with
childcare? Yeah, wonderful. Just step by step.
Yeah. Step by step. I'd say over the holidays,
start, I mean, he doesn't need to wear a uniform,
but start getting used to whatever clothes he's
going to be wearing at school. Start getting
used to shoes. I mean, that, you know, that is...
maybe the most important thing start getting
used to transitioning at a certain time in the
day maybe I mean there's probably flexibility
around that as well I mean the thing is it's
that the school sounds incredible and it sounds
like they're incredibly reasonable and flexible
so maybe pick like you said pick your battles
at the beginning maybe pick like a list of right
what is the absolute most important thing maybe
it's food in other places you know maybe that's
the most important thing pick your most important
fundamental thing and just start there and almost
forget the rest like forget the uniform forget
the transition time and him being late you know
forget four days a week forget full time you
know all of those kind of things just focus on
we need him to be able to eat in a different
chair maybe is the first thing and and and and
until that's done well there's no point worrying
about the rest of it because that he can't do
it all and you certainly can't either hand over
like yeah just getting him to stay and be happy
and not kick the house But I think the, I guess,
again, because it is the school I work at, I
know we are really inclusive. I know that, and
I think just education has come on so much, hasn't
it? Like reasonable adjustments and doing, like
genuinely doing what children need and meeting
them where they are. Like, I know that happens.
Whereas I guess like your kind of, and parents
kind of think about schools, don't they? How
maybe they had the schooling experience. And
I can totally see why that. scary because we
didn't have Noah's in our reception classes did
we at school exactly yeah so I think for for
me I think I would feel more I mean definitely
I'm anxious about it but I would feel more anxious
if I didn't have a really good kind of knowledge
of what primary school is like now or at least
where I where Noah will be going and like you
say just trying to take like one thing at a time
and actually give yourself grace And going back
to what you said right at the start, there are
so many children with differences now and actually
kind of neurodiversity is everywhere, isn't it?
And actually that can be celebrated. Yeah, I
feel like primary schools are better for having
knowers in there. yeah so I'm part of specialist
provision but I'm attached to a mainstream school
and there's just as much need in the mainstream
school as in my specialist provision weirdly
just because yeah there's a need isn't there
and we're full so they're in the mainstream and
we are such a better school a more loving school
a more accepting school because they are there
and the children are just wonderful and the adults
are wonderful really celebrate everything and
it means that the children that are neurodivergent
but can cope in mainstream academically and socially
and all of those things, are also accepted and
celebrated and have reasonable adjustments and
their needs met. It's just all better because
of the knowers in the world that are seen. 100%.
And I think the children are more accepting as
well nowadays. Like mine is 8, 9 and they just
get it. They just don't even think about it.
Whereas I went to school and it was like, if
you didn't have your tie on right or you had...
like something anything different anything different
whereas nowadays like the difference is celebrated
yeah yeah or even yeah sometimes not even questioned
like yeah it's really interesting children are
incredible and I do think we should be led by
them yeah in reception class they're just like
oh that's just what he does I'm like yeah you're
so right like I wish other adults would yeah
have that 100 % and even at nursery like they're
great and like they kind of have always worked
with us to like talk about like, what we're comfortable
with and what we're not. And, like, they will
explain to the other children, like, when Noah's...
Because Noah's always kind of eating on the go.
He won't sit down. So, like, they explain to
Noah and the other children that, oh, Noah's
brain works a bit differently to yours and that's
what Noah needs to feel happy and that's what
Noah needs to do so that... So, actually, just
having those conversations at, like, an age...
I do think happens all the time, doesn't it?
And there are also children that will grow up
into being the adults that are in his community
when he's an adult. So what kind of world do
we want and community do we want around Noah
when he's an adult? Well, we want a really loving,
accepting, supportive, understanding community.
And that starts now, doesn't it? Those children
in his class will be in your local community.
When you drop off and there's some of the other
children. And they kind of, like, run up to him
and he hugs them, which is not normal. It's amazing.
It is, and it's just... And, like, even the other
parents, like, they pick up the other kids and
Noah runs up and hugs them, doesn't he? No, but
I'm more meant that the children are so accepting.
Yeah, yeah. You can see that generally means
a lot to Noah as well and to them. Yeah. And
then the teachers say that they've been playing
together all afternoon and forever else, which
is not normal. No, and that's lovely that that's
already starting. That's really encouraging,
isn't it? Yeah, 100%. Like, when, yeah, like,
he kind of likes interacting with adults, but
we didn't ever see before, like, the interacting
with children, did we? And then, like, just to
see him, like, running around with the other
children at nursery. Like Stuart said, like,
a drop -off, like, some of the other children,
there's two, like... who love him loads and like
they come up to him and give him a hug and you
just think oh my heart and it's just those little
things I think that that mean the world that
you might normally kind of take for granted but
actually like that is massive yeah and I think
that will kind of stand him in good stead for
primary as well and and I think although like
don't get me wrong I'm so kind of worried about
so many aspects of that transition and that change.
I also am excited for it because I think it could
really support him to kind of flourish. So, yeah,
I think it will. And also, like, it will, in
some ways, although it will be hard for us on
childcare, it also is a nice routine of kind
of what happens Monday to Friday. And actually,
if Monday to Friday doesn't work, we'll look
at a part -time timetable. I think he will get
used to it because he does eventually get used
to kind of routine and that transition. Yeah,
I mean, and transitions will always be challenging,
won't they? And as long as you've got the support
of the school, which sounds like you have, and
support of each other, anything you face, you'll
work together to come up with solutions. You
could have the best plan in the world, and there'll
always be something. Yeah, I think sort of giving
yourself... not praise because you don't want
to be self -praising high -fiving and all that
but just going it is all right and you are doing
an all right job is yeah important i think you're
always like we're always questioning like you
always could do more couldn't you yeah and like
we say because like he's got the the kind of
communication needs he's got the aphid he's got
the sensory differences they're there's so much
going on and it's like okay right we're like
right we need to really model his AAC device
and like we're really like trying to put time
into that and then it's like oh god like he hasn't
eaten anything in however many hours he's getting
dysregulated like and then it's trying to kind
of spin all the plates really I can relate to
that as a teacher actually that we're like oh
we haven't done any learning today and they're
like they're fed they're safe yeah they're regulated
we've done enough and it's it is accepting that
isn't it of like actually today we met their
basic needs yeah you know and they went home
clean well yeah clean enough content enough regulated
you know what actually we did a good job today
it is just like sitting with that isn't it and
it's yeah no it's just just be having a positive
outlook rather than getting wrapped up in the
negative speech oh that's a wonderful place to
finish our conversation I'm so pleased that you
guys are here I think this is a really important
conversation for lots of parents actually but
especially parents that have children and they're
still coming to terms with everything and just
and being I think it's really important to have
the conversation of it's okay to still be coming
to terms with everything yeah which is really
wonderful. Where can people find you guys? So
our Instagram is journey2autism with the number
two. And yeah, there's loads of stuff on there.
Always feel free to message us. I love connecting
with kind of other families and kind of sharing
what we've learned throughout the process, but
also giving me some top tips of what to do for
like... For transitioning to school, for example,
or for ARFID. But yeah, journey to autism. Amazing.
And you guys and anyone listening as well, if
you need any support about transitions, I've
got so many tools and stuff on my drive and available
that I use all the time, visuals, everything.
So if you have a question or you need a resource,
I've probably got it. So please just reach out.
Definitely. You're amazing. Thank you, guys.
Thank you so much. And have a good rest of your
day. Thanks so much. Bye.