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.
Welcome back. Today I'm going to be joined by Neuro Spicy Apparel and I'm so excited to get
chatting with her. We've been chatting for a little while as like small business allies and
clothing allies and I'm so excited to speak to her. She is a mom of a gorgeous autistic boy
and she has created the most gorgeous clothing as well, advocacy clothing. How are you doing?
I'm good, how are you? Sorry for the really awkward like bedtime time that I choose.
It's fine, my kids are all asleep. Oh wow, how did you manage that? With a lot a lot of sleep training
and consistency and routine. AJ's only just gone to sleep so it's what two minutes past seven.
I can still hear him mattering away to himself but he's in bed. How many children do you have?
I've got three, got three. So I have AJ who's coming up to six years old, I have Amelie who is
two and Arielle who is three. Wow and is it AJ who has the diagnosis? Yes so AJ is autistic
non-verbal or pre-verbal. And he's just turning six? Yes so he turns six in February. Okay so he's
had a year of school? Yes, well he's coming into his second year of it now. Okay and what kind of
school is he in? He's in a mainstream school but in a resource provision. Okay so he's in a mainstream
school but he's in a class of I think there's five children maybe six in his class. Amazing.
And is he getting on all right? He's absolutely thriving, he's a completely different kid.
Interesting isn't it? Yeah. Because there's a lot of fear that goes into that transition.
Yeah. Was he at nursery before as well? Yeah so he's been in three nursery settings. The first
one is the one that my two girls still attend and it was a major fight to try and get funding for him
for the extra help that he would have needed and because they're under a different council
no one likes to talk to each other. We struggled so we moved him to a different one that said they
could help him and they could focus on him and do all of that and then didn't. And then we finally
moved him to the nursery within the school that he's in. Oh cool. Yeah so one of my friends has her
son in the resource provision and was like oh no they're amazing get him in here. So we got him
into the nursery and they still only could do I think it was 2.5 hours a day because that's all
he could handle or they could handle. Yeah that's the thing isn't it? Like I've seen both. I have
seen it where it's genuinely in the child's best interest to just do that half day but I've also
seen it the other way around. And I think if they'd have had the funding to have because he had a
one-to-one for those two and a half hours and he was fine but then obviously those hours run out
and then he's a bit of a fruit box. It must be hard because everything's out at once like
it doesn't suit like autistic what they want typically. They want it not visual it not cluttered
and he had 31 children in it and it was just way way too busy for it. So he would just go and hide
in the corner and play with his toys and they were quite happy to just let him do that. Yeah.
Which is fine and then obviously with him being there and being in the resource well in the
resource provision now when he was in the nursery is when they applied for his EHCP. So before we
got him into year one he had his EHCP. Amazing and now he's in the right place with the right
support. He's got his EHCP that's amazing. He's thriving and I saw that he has been saying some
words using his EHCP which is incredible. Do you want to tell us about that? He uses the visuals so
like you have in your classroom where they're stuck to all the cupboard doors and they're stuck to all
the wall in the toilet and we use them at home but he kind of he doesn't have the attention span.
Yeah. To put it politely he to try and get him to look at them when you're holding them and you're
trying to get them under his nose he's just not interested. He'll use them in school but flutteringly
and I thought he's on his iPad all the time. Yeah. Put it on his iPad and it works. He's
talking to us and we're only five days in. I was gonna say it's new right? Yeah so I think we started
on Tuesday last week. Wow. Nearly a week and last night and tonight I've just put him to bed
night night I love you and so hear that from a child who for six years you've waited for a void.
For a void. Yeah I'll just hold my tears I won't I won't do anything. Yeah because I'll take over
because as much as you as much as you're happy and you know they love you as much as you say
you know I accept them. Of course we do. But my god is it amazing to actually give those away.
Yeah and at first he kind of you you press the buttons and we have in in in in in stop stop stop
and it's just constant and you're like oh my god is this what it's gonna be like when you actually talk.
But then the more we're using it and we're using it consistently and I feel like I'm that annoying
parent and I'm like you you want your drink okay you drink or you want your shoes okay shoes on.
That's why you're seeing results already in five days like sometimes it takes 12 months of in in in
in to get to the point you're at so that shows how much you have been modeling and I think the
same I had Laura Philly World of Autism one day too. Yeah and she's seeing great results and I do
think it's because she has literally dove in like head first and like if we're gonna do this we are
gonna do it and I feel like you're doing the same. Yeah and I kind of I thought if I'm paying for the
software I'm just I'm going in I've paid for it we're making the most of it I've bought an iPad
solely for that so it's completely different to his play iPad and he's gone into school with it
today and he's been pressing bits in school as well. Amazing so awesome it's his voice he's finding
it out isn't he and if your child is like babbling with it because that's what we call it like baby
babble or swimming with it even. Yeah they're just testing it out like what does this one mean like
imagine if all those pictures were in like Japanese because he wouldn't necessarily understand what
the pictures are or where to go so imagine they're in Japanese and then you'd have to press all the
icons to know what they make and to find out what sounds it makes and the chances are he presses it
this morning I pressed school when we were in the car on the way to school and he pressed classroom
and was like classroom and I'm like yeah we're going to school to your classroom and you find
yourself like yes exactly and it could be a simple bit it could not but it doesn't always matter
because he's been building those connections the more he does it and the more you do it he's
yeah when we get so excited about it like the fact that he's pressed something and it links and he
yeah he might have done it by accident his finger might have slipped but we're like yeah yeah yeah
that's what you're trying to say and then he gets so excited by it that he presses it again and then
the chances are he'll actually verbally say it and we're like this is it because that's another
thing that people say right that oh I don't want to do like visuals or ipad because I really want
them to speak yeah and you will not believe how quickly how children will start to speak
if they're using the visuals and if they're using the support system because it's just
it's just showing them like the people are there to be communicated with and when you communicate
with them you get the stuff you want yeah but it's basically just our language processing
they they continue to press it and then they hear the noise they register that noise and then that's
how the language comes yeah and yesterday he was pressing stop stop stop stop stop stop and then
for about an hour afterwards he just kept shouting stop stop and people are like yeah okay stop you
stop it's amazing that he's finding like because he can hear it in his voice yeah he's worked out
really hard yeah he must be working so hard to like find out how to say it with his mouth and
then saying it and know the meaning there's so much going on there isn't there yeah so much
learning to so many people because so many of like people that I've spoken to are like oh well he
doesn't talk and I'm like no but language and learning to speak is hard it is so hard I still
now when I'm trying to talk get all my words mixed up on my sounds and I have to process it all so
he's got to do that 10 times over he's still learning he's a baby yeah exactly yeah and there's
and there's like babies will listen to language for 12 months this is neurotypical babies for 12
months before they even say babble yeah so like add us like processing on there add sensory on that
add proprioception because you might not be able to make the right things of Italian there
yeah and social communication difficulties and they're like they have that all on like my goodness
they're amazing yeah did you think about autism before absolutely nothing we went into this
completely blind we just thought he was born he was what was like a lockdown baby yeah so he
wasn't socialized there was nowhere to go we couldn't go to play centers there was no we
weren't allowed near other children so when he started nursery when he was 14 months old
he didn't socialize with other children right he played in the corner by himself he
lined toys up in the corner because that's what he was doing at home you had the reasoning behind
you like yeah it's so good like he hasn't socialized yeah of course you would take that spine nursery
were like well he's not hit this milestone and he's not hit this and he's not reaching this one and
he's not talking and I'm like yeah but he doesn't know how to because he's not had the chance to
um so we thought nothing of it and then it was when his middle sister was born and she was
reflux she had reflux she had colic she was tongue-tied she cried a lot and he was really
really sensory to it and would just destroy everything inside because it's so bad and then
at that point is when I asked the health visitor I was like I need help what's happening like why
why is he I'm not coping with it but why is he not coping with it and then that's when they did his
two-year check then it was like okay he's not meeting this milestone he's flying with his um
he can run he can climb he can walk he can do all of that but he was so behind on his social
communication and stuff like that which is when we got referred to all different places
um and it probably only took about eight months before we then saw a pediatrician
that's amazing who did the tick box ADOS assessment with me and was like yeah yeah yeah he's autistic
I'll give you your diagnosis today and I was like what what do you mean he's autistic
he's autistic um and since then is when I've done I've literally just delved into it um books like
on google 24 seven you get access to like speech and language therapist occupational therapist
teachers like everything you could ever want on there and yeah it's a lot of information isn't
it but I don't know how parents felt before that because you would get this diagnosis you knew
it was a piece of paper that says here your child's autistic off you go right what would you do with
that information and I was like well what do you mean what do I do now so that's when I started
researching toys that he could play with or because he's never played with toys and he still doesn't
now really he will play with like train tracks he builds train tracks all over my floor so he likes
the connecting yeah the jigsaws and he's got ipad games of just jigsaws and he can do like
100 piece jigsaws on his ipad I can't even do 100 piece jigsaw and he's flicking between all the
pieces and doing it all um he builds with lego but he doesn't like big lego duplo really tiny
fiddly lego um so anything that's building or construction or wheels yeah I wonder if he's got
either the connecting or the orientation schema yeah schemers yeah yeah um they often go hand in
hand actually yeah that connecting of jigsaw puzzles but also with a puzzle you kind of turn
it don't you just get it in or yeah so yeah that orientation is often quite interesting as well
amazing but he's never because we never we bought all of the I was one of those mums that only wanted
wooden toys yeah I do work to my advantage because he would stack and he would line everything up in
color and cars like little hot wheels cars he carries a hot wheels car around with him 24 seven
it's a little gold car so old now I'm like waiting for the wheels to fall I'm like sometimes if he
drops it the wheel will like fold inside the car and he's like and I'm like okay it's okay we fix
it but so if we if we lose this car we're like okay where's it gone and he will be like panicking
you can see the panic in his face when he's lost it that's his safety yeah so we it was little
snuggies he used to carry it was almost like a rag that he used to carry around and now he's
replaced it with his big boy car well it's good to know that it can be replaced so when the
dust comes yeah hopefully there's something else yeah we're distracting with another car
yeah it's the thing is they decide don't they there's no yes us decisions about it no absolutely
not I'm the perfect wooden toys you know it's gonna be this like horrible McDonald's toy that
you just love yeah the most garish loud toy that you can find yeah so I kind of when we were in
the process of not process but like when we found out that he was autistic I went out and bought all
of the loud flashy toys that would repeat things or you hold it and it would repeat like record
what you say and repeat it back and then we started to get bits of babbling and stuff like that and it
was like okay so it's there you've just you've got to unlock it yeah yeah it's and every child's so
different as well so like somebody might be listening to this and like oh I did that too
and that didn't work and then that's just a different child right I find a different arm
to go out of how what's gonna work for your child and we thought we would never hear his voice
we thought okay if he gets to 10 years old and he's still not talking that's fine because he does
they do communicate in their own ways there's a lot of hand-over-hand or takes you to what he
wants or brings what he wants to you yeah and I thought okay if this is it that's fine because
he communicates how he needs to and then I just decided on a whim let's go for it with the AC
yeah because at least you've tried everything right like it's always like oh yeah it might
off but what if it does and and then it's amazing that you've started it so early as well because
you know some people are discovering it now because it's new now right but there's like
25 girls that haven't had a voice for 25 years and they're just finding it yes and we're learning
oh my god you knew all of this and then you think god you knew all of that all of that yeah and even
with like school and his teacher and stuff they've all said he knows exactly what you're talking
about he knows he listens to everything they can be on the other side of the classroom and they'll
be like okay we need to move that box that's near ageo because he's gonna clock that in a minute
and he's gonna climb on it climb onto that thing and then he goes I'm doing it anyway
so he listens to everything and he's so he's so clever you've just got to find how to yeah get it
out of him because no non-speaking doesn't mean non-thinking yeah yeah never be incompetent
absolutely yeah I always think like whenever I do say to someone or he's yeah he's autistic he's
non-verbal I do get the oh and I'm like elephant there's nothing wrong with it like he's fine he
he does communicate trust me yeah yeah it's amazing actually I've known non-speaking and
non-verbal children to be better communicators than yeah the talking children that I've had in
my class because sometimes with echolalia or guest-art language processing they're they're
hyperverbal actually but they're not saying anything of important it might be important to
them but they're just kind of babbling these words over and over and over again and actually
they're not communicating with you effectively at all whereas actually you somebody reaching
their hand pulling you over to a cupboard to open it yeah he's a way better communicator
and you're gonna get it for me and I'm gonna point to the picture that you've got on your cupboard
and tell you what and they're with you they know that you can access what they want they're working
really hard with you so that you understand when they are like that the eye contact that you're
going to get from them is like soul-destroying my god when you're cleaning your eyes people that say
what you're talking about your eye contact have never said no to an autistic child
you hear you also see the best communication at that time right yeah absolutely so when it's not
a swimming day and there's a child who wants swimming yeah you will get great eye contact you
will get the best communication ever you'll get attempts of verbal speech you'll get them
picking up their bag finding symbols i don't even know you used a symbol i don't even know
how to read and they'll find it yeah aj will give you direct eye contact that sometimes and it's
it's so creepy because you're like what what do you want and you think oh actually he's got this
in his hand or he wants you to open this or you look at the cut the toy that he's holding and it
is broken and you're like oh okay you want my attention that's fine okay we can help we can do
that whereas they just assume when you say oh they're autistic non-verbal that they just
they're not going to socialize they're not going to do anything yeah and also like maybe some
things what they're into is similar to what toddlers would be into or sometimes how they
move would be similar to how a toddler so they assume that everything is like is that level and
actually these kids are so spiky like you said with his running jumping climbing they're obviously
they're often way ahead of their age group in some areas like that yeah but then others they
wouldn't be and it's different for every child it's different for every new virgin child um i
have worked with maybe 400 or more children on the autism spectrum and not not once been the same
no not one no um there are similarities there are similar traits there are similar you know
things oh that reminds me of that person oh that reminds me of that person but never the same no
which makes it so similar they do this they do this exactly the same one of them will all of a
sudden go ah but i do this yeah exactly exactly they're all yeah different and they've all they're
all so amazing in their own different way once you realize oh actually you're really good at this or
look at how you've done that or aj will if you're trying to put a train track together and you put
it the wrong way you'll almost like snatch it off you to be like excuse me what are you doing
absolutely and i love that that's what makes my job so joyful because genuinely i am learning
every day like the kids in my class teach me about the world to stop these look so much yeah like
they are present in the moment at all times like it is about now it's about what i want now yeah
like there's nothing there's nothing better than coming into work or coming home and you're stressed
you're anxious or whatever and they just ground you they're like look love i don't care about what
you've going on we're doing this and i want this now and i'm like oh like yeah cool yeah actually
yeah it doesn't matter yeah aj is very very like if i'm on my phone when i'm when we're in like
after school if i'm on my phone he just takes your phone he's like no it's not time for that mom me
now yeah and it's so that's so refreshing so i've had that as well with yeah so it's like yeah
because you get lost in it don't you that world especially so let's okay that goes on to your small
business how the hell are you a mom of three and autistic child winging it incredible small
right so your son's diagnosed start school um autism right okay let's get into this
build a community yeah did instagram come first instagram no i so i've always had like my personal
instagram and i've always i've always followed you on my personal instagram and like a few of the
other autism accounts that i've always followed and then i've it's more a sense i've i started it
because when you're out in public if he has a meltdown the looks that you get the stairs that
you get i've had people talk at me i've had people say well he's a bit too old to be in that wheel
that buggy isn't it and i'm like that's his safe place and it's not a sense of ignorance of the
general public but it is in the sense that there's just not enough knowledge of autism and there is
it's not explained enough and i just wanted to not label him in a t-shirt that says i'm autistic
because his label doesn't matter he's still who he is like that it's it's that's just who he is
that's how he functions that's how his brain works that's how he's wired up but i just wanted to raise
awareness but if he is having a meltdown i can be like he's autistic he is a bit loud he can't
handle how it is and all of the t-shirts that are about are very bright and they're really
i'll say yeah those are let's say it like all pieces and infinity symbols and bright garish
stuff that's in your face and yeah i want it to be in your face i want you to see that he's autistic
or i'm a cool sen mom that i'm here with my autistic child but i want to do it in a subtle way
that and also one that like is aesthetic but yeah but he's a little bit fashionable like why would
why could you not have both yeah yeah and it's kind of i wanted it to be so we have like the
always advocate range that well what are you advocating for ask me please ask me because
i was a conversation starter so the children it's it's acts as like a protective shield almost yeah
like you don't need to judge me because this like i'm already telling you who i am so like leave me be
kind of like a field and i totally get yeah and for moms it's like ask me yeah ask me yeah ask me
i want i want to tell you about it i want to change the look on your face if you're talking
at me because he's screaming and he's kicking me about and he's lying on the floor in in sainsbury's
yeah ask me ask me why you're doing that yeah i'll happily tell you yeah exactly and your clothing is
so gorgeous like so good the colors that you choose your t-shirts and jumpers are divine
your fonts but the fact that you cut out the words in the pumpkin just oh it's just so good
so they look so good no matter what they say like i love them anyway yeah but also they are so
meaningful and so needed like yeah and that's what i wanted to do and like the smashing pumpkins and
stigmas one that we've just done i wanted it to be honey or like we have rebel without a clause for
for christmas i want it to be legible to the season but i also want it to be funny and i want
you to be like okay well what stigma are you smashing or okay well what claws have you not got
and he's not got the neurotypical claws yeah because he's more spicy instead yeah i love it
i love it so much and also you can wear it so proudly like everywhere like do you like living
in your uniform i just wear to send mom club daily it's also a bit of a win isn't it yeah because i
feel the same because you don't even need to think about what you wear because you just and it did
start off as an autism awareness brand just purely autism and then i thought actually no let's go for
all disabilities like you advocate for everyone we make sure that everyone's included so whether
that's down syndrome whether it's just adhd whether it's cerebral palsy like we advocate for everyone
we want everyone to be included so we advocate and that's kind of i've reduced the range down
a bit and we have got some new stuff coming in the new year um that i just want it to be for all
disabilities yeah yeah yeah that's great except everyone like and then do you make it yourself
do you print that's amazing that you do is it screen no so it's all vinyl heat pressed on
so it takes me probably 15 to 20 minutes to do each one and then obviously with the big influx
that we've just had for the christmas um collection i am up to my eye yeah amazing
like it's so lovely to receive messages and photos of people in them yeah because you kind of forget
like you make them you spend all your like like you put so much love into it and then you slip
it off and then you never hear about the ones you're making yeah you like forget that they ever exist
yeah and when people tag it and like tag us in pictures or tag us in stories i love it i love
seeing out in public i think oh my god how many people have seen a t-shirt that i've made today
because like it's through the website or through instagram and there's no like face-to-face like
chat like they would be on a stool or whatever yeah when you start to think oh they're they're
they bought an age six jumper yeah like yeah it kind of gives a little clue as to like yeah
we have people that have just bought like christmas ranges and they've bought like a five to seven
and nine to eleven and twelve to thirteen and i'm like your whole family's wearing that
it's so cool and also like who knows how many conversations that you will never know the impact
no and that's actually really exciting as well isn't it like the impact of the jumper is not
only for the mum who feels more supported as part of a community who can go out more confidently
because they know like even if the people she's seeing hasn't got her back like yeah the crew
doing like the cool mum's shirt yeah or dad's love and then the kids was more protected and like
and also those conversations that are going to happen like so much will be happening because
of your designs yeah that you will never know no and i've had messages from people saying oh three
mums came up and asked me about where i got my t-shirt from today so i've given them your website
and then two days later i might have a follower message me and it ends up in my request so if you
were in my request i apologize there's loads but i'll have people pop up in my message request like
oh someone recommended me like last week and i'm like yeah like welcome and it really is
on the community isn't it yeah i feel like the sen community on social media is the best part
of social media yeah and i think when you have friends that don't have a neurodiverse child
um they they just don't get it as much as they try to get it and as much as you can explain it
and they see it and they experience it and they experience the meltdowns or my best friend got
namest by a dinosaur last year by him swinging it so she's been in the thick of it but i think
sometimes when you speak to someone that does have a neurodiverse child they just get it
yeah and whether you want to say oh my god they've done my head in today i can't the meltdowns have
been unreal or you think oh my god i need to share with someone that you said strawberry obviously
they say they just get it yeah because it's because they could be your best friend ever
or like a really close family member yeah but if they don't understand like the journey for
every reason or how big that thing is then you're not gonna want to feel like you can share it with
so you can share on social media because they know yeah and the amount of love that i get when i
heard him saying night night the other night the amount of people i inboxed i was like yeah thank
you like this is like how amazing is this he's used it for two days yes yeah whereas like if you
hadn't have like known children like that you might not know the significance of it and how huge it is
yeah and i think i put it on my personal instagram that like i've waited six years yeah that and for
you for everyone else that follows me like on my personal instagram that i've got six-year-old
children that have been talking for four years that to them's like oh yeah well yeah we said
night night but actually no i've waited six years to hear two words of him yeah yeah it's amazing
it is huge yeah i was like oh like it's massive i know i was still over his bed like don't cry don't
cry don't cry yeah i bet you were i mean how lovely that you've got that on film as well yeah
so lovely yeah um because you could have told us about it but it's even more special to me
yeah yeah and i think it's going to stay in my camera roll that it's on the favourites like
it's not going anywhere yeah yeah that's amazing talking about community like since your son has
been part of ascend provision that you've got more parents that you can relate with or is it not really
like yeah so we in the school that he's in we all so school finishes at 10 plus three we're all there
at half past two we're all there at half past two we all have on that uh for 40 well 40 minutes
before the children come out and we catch up every single day and it's it's i said to someone the
other day it's the only bit of socializing that i get to do a day because i'm at home all day making
orders or tidying my house or running around taking children to appointments i don't speak to an adult
and then if i've if my partner's working away i really don't speak to an adult i speak to two
children that don't shut up and one child that i'm trying to get to speak so then when i go to do the
school pickup and i get to speak to someone for 40 minutes it's like word from it i have stopped
apologizing i used to say oh sorry he's autistic sorry he's not so like sorry he's pushed your child
like your child wasn't actually in his way and he doesn't understand how to get them out of the way
like sorry he's autistic whereas now i'm just like he's autistic like he didn't he doesn't understand
that i don't apologize for it anymore yeah because there is literally nothing to apologize for
no that does come with confidence doesn't it it does it's taken me what four four years to get to
this point but yeah and i'm kind of i'm very proud of that and i'm very proud of i am the person to
speak up now and if that means that i do it via t-shirts for you to wear i'll do it and on social
media too like you're like a good presence a really good positive and but raw and honest
presence on social media and i think there's you have to be both don't you yeah um and i feel like
yeah i feel like you do that really well it's all i wanted to do um you do have to show the ugly
is the reality sometimes that actually it was cracked today yeah i will show all the high
eyes absolutely i'll show all the highs but i also want to be real and not everything is
butterflies and rainbows it's not yeah and you want to people won't understand the journey and
the successes if they don't see the whole picture um yeah and uh they won't be able to relate to you
if they feel like every day yeah i mean she doesn't actually know like the struggles that
we've had you know if you've had a really hard day that could be quite hard to watch
yeah i suppose it's just finding that balance but also finding the balance between like privacy and
like how much do you share how much do you put yourself out i guess i guess you're just finding
that out as you go really i'm winging it absolutely winging it and i had another business that because
i'm now so busy with this i've closed my other business and i can focus solely on this i can
throw my absolute all into it and i can be at home with my kids and if it's picking up from school i
just go i just go get them i i'm very very fortunate that i have that opportunity now
whereas working nine to five i would never have that opportunity no also and you're not it's what
you're putting into the world as well like if you're a legacy and what you're putting into the world
is positivity support confidence community like you can only go to bed happy with what you've
become out in the world exactly and i think sometimes i think oh my god there's so much
more i could have done today or oh my god that meltdown was awful and he's gone to bed so upset
and i'm actually there's nothing more i can do i've done my absolute best and as long as you do
your best and you're still being semi-positive about it then yeah like you say what more can you
do yeah sometimes your best is different on other in on different days isn't it sometimes your
best is like no spoons yeah the spoons exactly exactly the spoons sometimes you've got 10 spoons
and you give it all and sometimes you've only got two and you still give it all yeah and that's still
giving you yeah i still give my everything and it just might be less than i gave yesterday but
that's because you got up at three o'clock this morning so exactly i've got no energy to exactly
because we're human and i feel like i mean god all parents beat themselves up anyway like
regardless of like what your children are or what they know whatever all parents are awful at that
yeah but a new and emerging child it just seems to be this massive weight of pressure like pressure
doesn't it and i suppose that's what the community can also give is that like you got it it's fine
like you're good it's all good it doesn't matter if you think you've done a crap day today actually
your kids are fed they're in bed they've got clean pajamas on like they're fine i want to
tell you this lovely quote actually if you're worried that you're not a good enough mom
that's because you are yeah because no not good enough moms worry if they're a good enough mom
or not absolutely yeah you're fine i've seen someone um coming and i think it's quite prevalent
maybe and it's not something i even thought that we'd talk about i think it's important
and christmas is her favorite time of year but since coming to terms with lola's diagnosis she
really struggles with christmas now christmas obviously it's built up with so much right it's
built up so much to be so magical yeah and sometimes with an autistic child it still is
but it is in their own way so we don't wrap ajay's presents because wrapping unwrapping presents
is way too much if something needs batteries in i'll take it out the packet i'll make sure
the batteries are in it so that he can use it there and then when he goes downstairs his sisters
will still unwrap everything and be really excited and that's absolutely fine but if he wants to take
his toys and go into our room that we've made that's like a sensory room he can do that because
that's where he's safe that's where he wants to be if the girls are too excited and screaming
and shouting about their presents that's fine and we do things differently now than we ever thought
we would do so we book we've booked like a sensory light trail this year that we're going to take him
on and we're not hyping it up that he has to walk around in his wellies in the cold we're going to
sit him in his buggy where he'll be happy and he can look at all the lights and we've looked at doing
like a sensory santa session but i just think taking him in taking him into a new place and
getting him to stand next to someone that's got a big fake white beard on so we just alter the way
that we do things it's still magical and when you see their little faces light up because they've
got new toys you get the same thing yeah i mean the quote comes to mind different not less and
that's not just about the child is it sometimes we forget that actually the day is different
yeah it's not less and actually it will be a far more enjoyable day if you're led by them yeah
yeah yeah and if you go off him and if he doesn't want to sit at the table which he doesn't he hasn't
done for a while now because we also have an arfyd diagnosis but if he doesn't want to sit at
the table and he doesn't want to join in with everyone around the christmas table that's fine
if he wants to be in the same room as everybody we can still see him he can still hear everyone
else talking he's here he's still with us and that's that's where the acceptance comes in as
well because i mean of course like we're both very accepting like that comes through everything
yeah but it's also accepting what isn't and what is yeah and it's like in every second it's almost
like again a muscle that you have to exercise isn't it acceptance like okay you you do you you
sit where you sit if you want to go and climb up to the highest bit of the place then where it's
empty and no one's there off you go yeah yeah yeah and there'll be not all sorts of parents
this is that i think you'll be assured by them of knowing your child isn't it yeah i've known
um one of my teachers had a autistic uh teenager and um he had ADHD as well and um he really
struggled with the not knowing what he was going to get the christmas yeah so she laid it all out
in her bedroom he couldn't use it yet because you know every day he would go in and he would know
exactly there was no question of will i won't i if i'm good if i'm bad there was none of that
nothing no lv nothing no just you are getting this on the 25th yeah regardless but you're not
touching it yet yeah but it's going to be on the 25th and then you go in and he accepted that then
because there was no surprise it was predictable there was no if you're good if you're good
it's not you you are you're gonna it's christmas we're making it magical for everybody there's no
if you're good if you're bad i mean his sisters won't get any presents i hate that with any
child anyway so it's christmas we all get presents we're not being spoiled we're not having
extravagant christmases we're just doing little presents we've all got a little pile each aj's
might be a bit bigger because his toys are bigger because they're sensory toys they light up they
do loads of extra things but actually you've all got the same just different um yeah and every
child would have different um you mentioned he had arfids events obviously for people that don't know
avoidant restrictive food intake disorder yeah and obviously that has impact on daily life
yeah and christmas as well because there's those expectations around christmas yeah
that everyone has i'm not partaking in eating all the brussels sprouts and everything else
if he wants to sit and eat his oat bars which is what he eats at the minute that's what he's
eating for christmas day yeah if my girls don't want to eat turkey or gammon on all the trimmings
and roast potatoes they want to eat chicken nuggets and waffles that's what they're eating
on christmas day yeah and i feel like having that community of people whether it's on social media
at the school gate on your phone in whatsapp whatever yeah just having people that are also
having chicken nuggets for christmas dinner it's like yeah and if it's if it's going to make
that many making adaptions to your day to be like oh well they have to eat this and they have to do
this and they have to unwrap their presents if it's going to make your child uncomfortable
don't do it yeah or miserable and then ultimately it makes your day miserable yeah because i think
it can be so easy can't it to watch the adverts look at social media and you're assuming that
everybody is having the most wonderful day or most wonderful time and they're seeing santa and
they're visiting this place and they're having like christmas dinner all sat down all perfectly
yeah you know what firstly that's never happening because you only only share the good no but also
there definitely is so many neurodiversion families out there but it's completely not that at all
no and if they don't want to get out of their pajamas we don't need to get dressed up i'm
probably not getting out of my pajamas on christmas day i'm not leaving my house so they need to dress
up i'm going to be covered in bits of food that i've been making all day or bits of sellotape
where they've like stuck it to me like it's you make christmas what you want to make it and that's
since becoming an autism mom i've probably realized that to say no to oh well let's go out for
christmas day let's all let's book a table in a restaurant no no i've got that's my idea of hell
like yeah that's so true isn't it that when you work with children um because they're so good at
advocating for themselves like if they don't want to do something yeah like they are not doing it
and that does come on to you doesn't it like i'm so much better at saying no and advocating for
myself now yeah having since worked yeah we're talking that every day fake for you to think oh
actually going to a restaurant and trying to sit around a table and getting all of my children to
sit and be quiet that doesn't sound like a good time so if it means that i have to stay at home
where he's comfortable where he can watch tv all day he can be on his ipad all day he can play with
new toys he doesn't have to go anywhere where he feels unsafe or uncomfortable i'm not putting him
or myself in that position yeah and i think a few of my friends and like family and stuff like that
have think that i have my backup about it and i don't i'm just making situations less stressful
for everybody because he gets stressed i get stressed i get snappy at people i argue in and
it just ends up absolutely awful yeah so so it's better to just not yeah it's better to just not go
out someone said um her little boy spent most of christmas last year in his bedroom in his bed on
his tablet it made me sad but he was happy and i think that and i think yeah sometimes it's
acceptance it's not acceptance doesn't mean you're okay with it yeah and you can feel sad the person
that feels worse about them being in their bedroom is you they're not bothered yeah they're happy
they're not being bothered by anybody there's probably people in your house that actually he
doesn't want to talk to he doesn't want to socialize with so i'm just gonna go up there's
where it's quiet and no one's bothering me and actually like if we could allow ourselves to
i'd be doing that more often yeah yeah yeah it's so true it's so true um okay about arford then
we've got sort of a couple of questions that come into that because i've spoken about it too
lot um on my account i have got one people in my class with arford um but new to me this september
so it's quite a new thing yeah it's very very new to us um he's always been really really restricted
with his eating and when we like look back now from him being nine months old from the minute i
stopped breastfeeding um he was always really picky with his food very sensory don't like
wet food spaghetti bolognese anything that's like that would make him gag and still does to this day
um but he would eat certain things and would like touch certain foods and then he's just
they call it like food jagging where they drop foods and we've kind of dropped that many things
now that we only have four foods that we do eat um so he's very very stressful and at the minute
he only eats in school he won't eat at home so it's very environment-led um we've tried to replicate
it at home but we're never gonna it's never hard isn't it because of course you want to control
that because because you're i mean i've got i can imagine a mother's you know you want to keep your
baby alive right and the the fundamental thing of that is sustenance and nutrition and food and um
and um and him only accepting food at school i would really struggle with that it's terrifying
oh my god if something happens like i can't control that environment if something happens there that
stops that he's not gonna eat he was getting um when we first started back in september there's
a few new children in his class like some have moved up up at it's not a year is it is at level
um and so there's new children in his class and one of them we don't know but one of them was biting
him and it was consistently he was bit three weeks in a row and it was i got to the point with school
i said if he continues to get bit and that affects the fact that he eats in school we lost food so
there was a big thing put in place about that and thankfully he is still eating in school
um but it's we're now in talks with ot i've had a big meeting today about ways that we can make
him comfortable trying to get food in him at home or food in him at respite or food in him at the
park or right where else that we can go because at the minute it's like school is a lot of pressure
on school isn't it yeah and it's so easy for that environment to change because yeah even the adults
i mean i know with 10 children in the room or even five children like in here is you can't control
those five children so something could happen so easily or an adult is off that week yeah and that's
what we've had the talks today and usually he sits with one certain member of staff and we've said
okay so that needs to change because if that member of staff off say yeah he won't eat right yeah so
we there's loads of different measures in place now his teachers come and try and do some bits at
home as he he will eat at home with his safe teacher if i'm not there or if i'm there so
there's loads of different ways that we need to do it but we've going back like a few years ago from
when he's eating really really deteriorated we do think some of it is quite trauma-based
and that's just from like i lost my mom who lived with us daddy worked away his new baby sister was
born there was three massive changes all within 10 weeks and it was like because it's controlling
isn't it like eating disorders comes from a need to control your environment now even if he has or
hasn't been through trauma like even if that isn't the reason autistic people in a world not built
for them yeah will need that kind of control that they'll they will seek that and food is a really
easy one to get that on to because it's one of the only things they have nutrition said when he when
he first because it's picky eating at first that's how they like to see it at first um oh well it's
just the only thing that he can control he can't speak to you yet it's the only thing he can control
what he's putting in and out of his mouth yeah okay but then two years down the line we're at
the point we've got about it he lost three he lost just over a kilo over the summer holidays because
he's stopped eating and drinking completely oh yeah school holidays so start eat finish for the
six weeks holidays and bam food went so you're making plans already for christmas i can imagine
yeah i'm like okay so we've got three weeks coming up at christmas what's happening now yeah yeah so
we've got things in place now starting from tomorrow we're doing like a food diary of what he
definitely eats in school and if he's not eating a certain thing then we need to try something else
we need to try eating in a different place so that he's not eating in the same table there's so many
different things when you think about it that of course yeah actually oh yeah i didn't i didn't
think about it like i like just with a lot with autism there's lots of behaviors that look like
this that rigid yeah hard to change behavior but some of it isn't as crucial and as important as
eating right yeah if they don't brush their hair they don't clean their teeth yeah okay that's
yeah not great but but food is it's another level isn't it i wonder if that's why it has its own name
because yeah it kind of so it's different as there is so little knowledge of it so our dietitian with
the nhs has admitted she just doesn't have enough knowledge of it i've heard this a lot before as
well and lots of people are struggling to get a diagnosis because there is people in their local
area yeah and they don't because there isn't enough knowledge and because it is quite mental
health based which is really hard to say for a six-year-old child but it is he's he's gone
through trauma he's trying to control his environment his brain is doing that to him it's not as simple
as saying oh we'll just take him to mcdonald's and he'll eat some chicken nuggets he won't
he will literally starve himself yeah this is the problem as well as i've had children they have
worked like those are fit but they definitely were like in the past you know i've had a boy
that he would just eat rich tea biscuits like that yeah yeah i'm diagnosed autistic like it definitely
was looking back i didn't know at the time but it definitely was lots of people would say to me and
his mom that oh well if he's hungry really really eventually he wouldn't have done it absolutely
wouldn't i can tell you categorically he would not yeah he would say anything else yeah yeah
because the thought of like if i walk towards a towards ajay with like a bowl of food a food
that's his safe food that he will eat in school if i walk towards him in my house with it you can see
the panic in his face he doesn't want to eat that that's not safe i'm no you're not coming
near me with that and he will push it away i've had bowls of like strawberries and blueberries thrown
over my living room because i don't want to eat that that's not no yeah and even um if it is the
right food if it is the right plate if it is the right cup the right environment then someone sits
next to you with a food you don't like or a smell you don't like yeah i'm not eating that yeah yeah
you've looked at me the wrong way actually you're watching me while i'm trying yeah and that yeah
yeah yeah so it's it was really really hard and we only kind of got the diagnosis on our
third or fourth trip back to we have open access to the children's ward now for when he does stop
eating and drinking because we are supplementing him with shakes now when he does stop everything
all together and obviously a couple of weeks ago he had chicken pox so they were all around his mouth
and in his mouth so he stopped drinking so then we ended up back in hospital and then that's what
i said to his pediatrician can i have it put on paper yeah this is what it is because the minute
i have a label i don't get more help but i have an explanation of yeah that's right that's right and
you get taken more seriously ultimately by a medical professional yeah and then that's on his
record for life as well someone said what is your advice for a child who refuses to eat anything
other than snacks at school parents have been sending in what he eats at home nothing
and we i can speak for school and kids can eat whatever whatever they whenever in whatever order
there's none of this sandwich first thing then dessert i suppose you know the child you know
the child right like we're we're talking about autistic children that are incredibly rigid and
controlling over their food and may not eat that's what that's when we're saying accept anything
yeah what we're not saying is a child that can eat perfectly like well it's a very diet just wants
their 10th bag of crisps okay yeah maybe not like maybe encourage other foods maybe encourage variety
of course yeah model you eating i don't think we do that very well at school yeah because the staff
go and have their lunch break separately or the staff go have their snack separately yeah because
you need a break but actually eat in front of the children they're not seeing that modeling of eating
different foods and stuff so yeah that's something to add to about school yeah in the meeting today
she said i do eat in front of the children because i want them and then they all have so aj still has
the red tray of his school dinner put in front of him regardless of whether he eats it it's still
putting in front of him everything and if he doesn't eat it and it's pasta she said chances are i'll take
a few bites out of it to be like look it is edible it's food yeah yeah that's right yeah it shows him
but we haven't given up on him we we have the expectation of you we believe in you that you
will do this one day but no pressure at all yeah but we just can't get him to eat at home which is
terrifying it's that really is yeah so we we're winging it one day at a time and as long as we
get his shakes into him which is essentially his calories which we're buying off our own back he
won't drink the prescribed ones anymore i think he's fed up of them they taste funny um we're just
doing what we can yeah and like we said at the beginning like that has to be enough like yeah if
you've got one spoon if you want to drink shakes all day on a saturday and you don't want to eat
them that's absolutely yeah in fact yeah we it's more than fine we will be praising for it because
then yesterday he requested grapes on his aac and requested strawberries a couple of hours later so
we ran and got a bowl of grapes and we ran and got a bowl of that's another great thing about
that tablet right is that there's all those options always available at all times yeah you
just have to wait for us in we don't have to wait for you to guess or that you think the company he
can ask yeah that's really out of the blue he was like playing on his ipad and then he looked at his
aac pressed a few buttons and they're grapes grapes grapes grapes so i ran and got a bowl of grapes
and yeah i might have had to almost force the first one in his mouth but then he ate
two halves of a grape and i and i have to like test so he's at three like one and a half i know it's
so like thinking about that sense of control having his tablet will give him that sense of control
won't it because he can choose what food is in the house he can choose what he thinks is eating
whereas maybe before he wasn't able to have that control and we're kind of we're batting blind and
we're like offering him this and we're offering him an oat bar and actually he doesn't want an
oat bar i don't want it now because you're asking me to do it i don't see you're doing that demand
from me i don't know i don't want it whereas with the tablet he's in full control he's got the say
of what's happening and when yeah and it's his choice yeah yeah i think yesterday when he ate
the grapes i stood in front of him and i said to his dad don't say anything don't even look at him
don't look at him but i thought don't acknowledge it and he uh i think he ate two grapes yesterday
so like four halves of grapes and we were like that's the most that's the most he's ate in 17
weeks at home amazing it's amazing it's huge isn't it and i feel like he's got his own back
yes and i think that's the point isn't it yeah and you having the tablet might be perfect timing
in the lead up to christmas that like he can start trying out his voice finding that ownership again
i'm so pleased that you're sharing your story because i'm really excited to
to experience the start with you it really feels like the start yeah and it's it's still new and
we're still when we're trying to think oh actually we need to click car and then school and it's all
on different pages and you're like oh my god where is it and you're like fumbling trying to find a
lot isn't it like when you're doing you're like oh god you are really good at this yeah yeah yeah
so we're still trying to do it and we can edit the pages so we've got things where they need to be
and stuff like that but it's yeah it's hard it is hard and that's a new language it is it's like
learn yeah it's like learning a new language and trying to find it and then him doing things just
off the off the bat and we're like what you want your strawberries okay yeah you can have some
strawberries and then like yesterday in the bath i pressed brush teeth and we can never ever get
into brush his teeth ever i pressed brush teeth and i must have pressed it about four times
brush teeth so i said yes yes brush teeth yes brush your teeth gave him his toothbrush and he
looked at it as if to be like what is that what was this and i was like brush teeth he brushed his
teeth so it's like you know how to do this you know you are clever enough to do it but we've
just never given you the opportunity as well if he does have a bit of a pda profile the fact that
the tablet is telling him to do it and not you yeah it's also a really great way yeah oh if i get
if i press brush teeth and then i get him to press brush teeth you've actually done that not me yeah
if you don't have an expensive ipad or app sometimes just writing on a whiteboard
because the whiteboard is telling them to do it rather than you is it really does help there's a
few um companies that i was going to look at and obviously you have your stuff that you can all
print off you can stick your visuals to and stuff like that which is a really good way to start
using it and i think when you do get your child into i think quite a lot of mainstream schools
do it now but when you get them into like a specialist provision visuals are key and they're
usually so much like it was completely new to us when he first started and we had no idea and i was
like what do you mean he's using these little pictures what do you mean he's using this this
little bowl or this little pile of beans that says more like what do you mean and she's like
and she's like yeah he uses it and i'm like no he doesn't there's no way he does but he does and
with when they go to school and it's used consistently because the teachers are trained
to do it and it's just off it's second by their peers yeah it's second nature to teachers and
also not only that but that we don't understand them as well as you understand them no so the
children have to work harder they have to use the symbols and sign and and read because we don't
understand what they mean yeah so we'd be like oh actually what you want a snack okay well we'll
just go and get that's no judgment at all it probably just works differently you understand
his little looks his little eyes his little his hand gestures or whatever just for time of day
you'll know what he wants whereas you kind of no you need to tell me because i don't know yeah
yeah and then they do they learn how to use them and i think if he hadn't have had the physical
visuals because they use the now and next board and there when he's eating they put a picture of
his physical food on the board and they used like finished something else and more i think
um i think if he hadn't have done that i don't think he would have worked as well with the aac
maybe not as quickly yeah yeah yeah because he's he's learned that pictures meet have meaning
yeah through that hasn't he when he first started school he would only work to actual pictures so
when a picture of his actual classroom rather than the classroom symbol whereas over the last year
they've kind of whenever they've showed him the picture they've shown him the symbol as well so
it's been so much work for school and i think we take that for granted that he does so much in
school that when he gets home he doesn't want to do it yeah yeah because that's his respite right
it's almost like you being like on your nine to five yeah and then coming home and people saying
well come on then and he's like actually no i don't want to do that no i need my respite and
that's okay too i have to get messages like i'm sure you can imagine from parents saying what
more can i do to like help my child community like just let them rest yeah we've got it yeah
we're doing it and yes of course they're a thing of course there are always things actually respite
is crucial because they need to rest in order to have the energy to in order to learn so do it again
the next day yeah yeah exactly exactly oh it's been such a pleasure speaking to you i'm i didn't
expect this to go down the christmas route but i actually think it's a really important topic
that we don't thank you so much this has been such a pleasure and um yeah and you and um i
yeah i can't wait to see uh his journey i'm really excited take take care and um yeah have a good
evening thank you bye