July 11, 2024 • 58 mins
Join the Two Charlotte's as they continue their heartfelt conversation on parenting, shifting focus to the unique challenges and rewards of raising children with additional needs. This episode delves into the personal experiences of Charlotte, who shares her journey of adapting to her son's sensory processing issues and dyspraxia, from recognising early signs to seeking a diagnosis and navigating the educational system.
Listen in for an honest discussion on the sacrifices and learnings along the way, the importance of early intervention, and the invaluable support from schools and healthcare professionals. Whether you're a parent, educator, or simply interested in understanding more about neurodivergence, this episode offers insights and encouragement for supporting children with additional needs.
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Episode Transcript
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(00:00):
Hello and welcome to another episode of the Two Charlottes Spill the Tea.
This week we are going to follow on from the conversation we had last week about
parenting and single parenting struggles,
but this time we're going to address the kind of topic of children with additional
needs, but not so much the children, but more from the side of the parents.
(00:20):
So, you know, the struggles, the pitfalls, but also the things that you do differently
if you could go back and do the whole process again.
So, you know, I don't personally have too much kind of experience in here.
So I am going to quickly pass over to Charlotte because she has a lot more experience in this area.
And then we can kind of discuss because we've had quite a few conversations
(00:43):
recently, you know, about signs and things that we're picking up with,
you know, our kids and it's become a bit of a topic of our conversations.
So we thought we'd discuss it with you guys so I'll pass over to Charlotte and
she can talk about her experience.
Hi guys yeah so parenting children
(01:03):
with additional needs is it's
crazy because it's it's something that I always thought
would be really really hard and
I don't want to detract from the fact that actually it is really
hard but for me and my
experience and what I've had it it wasn't that
(01:24):
I found it easy it was that I didn't know
it was any different I didn't know with my
son that there was anything different it
was just the way things had always been so the things that he struggled with
growing up were just things that he'd always struggled with and I adapted to
suit his needs and work with him so it was things I suppose like he was kind of late developing,
(01:50):
but like people always said to me, oh, boys are always later than girls.
I have a daughter, she's a lot older and she was premature.
I was told she would always be behind. She would struggle to catch up with anyone,
but actually she was very advanced and was kind of hitting the milestones early.
So I was like, well, right. Okay. She's very, you know, very advanced.
(02:13):
She was well able for play school when she started play school and, you know, just.
Very capable of you know talking and she
she could read when she started play school basic words and
things like that she could write her own name she could draw pictures
of people you know she she kind of hit all of these things
early she was definitely scatterbrained but so am I so you know things like
(02:37):
putting her shoes on the wrong feet and her trousers on inside out and not really
you know there was no sensory issue she never she wasn't she wasn't what I would
say a hard child to look after.
She was super easy to look after, super advanced, well capable of saying what
she wanted, what she didn't want.
And it was just, it was just very easy. And people used to say to me,
(02:58):
like people in my family used to say to me, oh, you, you got,
you got lucky with that one.
Wait till you have another one.
I'm sure you're going to have a difficult child. Like she never cried.
You know, she wasn't like a tantrum child or a stressful baby.
She was just happy and easygoing all the
time so and and to be honest so
am I so it was kind of like pretty pretty chill then
(03:21):
I had Max and he was also happy and easygoing
but completely different to Maya so he didn't hit the milestones at the right
age but everyone kept saying to me that's boys for you boys are slower they
don't you know pick up like girls do it'll take him a long time he was very
strange about certain fabrics and stuff on him he didn't like them he didn't like
(03:43):
wearing jean, like genie material or it had to be always soft stuff and I kind
of didn't blame him for it. I was like, yeah, it's way more comfortable. Who wants to wear.
Hard tight scratchy jeans when you can
wear like jogging pants you know and he was only like a
baby then you know baby toddler growing up he
struggled with his speech but my brother struggled with his
(04:03):
speech so I thought that was normal my brother had speech therapy you know and
all of that kind of thing when he was younger so people couldn't really understand
him apart from the people that were with him all the time so like I could understand
him you know his friends could or or like my friends could understand him pretty, pretty well.
He didn't really, like I said, he didn't really hit the milestones at the right time.
(04:27):
He struggled with like movement, you know, like running and he couldn't jump.
I remember spending so long trying to get him to jump and he would like put
in all the effort and then his head would go up off his shoulders,
but his feet would stay on the ground.
I did it. I did it. and he was
(04:51):
desperately afraid of heights it always has been
always still is but to the
point where like he wouldn't go up the slide at the playground he would get
to the second step and he'd be screaming blue murder on the floor crying screaming
want to go home hated it but again i understood okay yeah he's got a fear of
heights i didn't really want to push him to you know going Going to the playground
(05:14):
for him was traumatizing.
It wasn't like a place of fun. It was just full of really scary things that
anything kind of higher than one step was just too much for him.
And it was, it wasn't something we could do. I couldn't take him to the playground without a meltdown.
So if we were going to go to the playground, I knew that it was going to be
(05:35):
really hard work for me because he was going to end up getting really stressed
and upset and just be on the floor screaming and crying.
And so I just you know I'd not go to those kind of things with him I'd make
sure that we did things that he liked to do and he liked numbers he liked counting
and he liked putting things in lines so.
(05:56):
That's you know that's what we would do a lot of things like that would you
know that he would like and he wouldn't like being in certain places or doing
certain things so I wouldn't take him to certain places and do certain things.
Or I would make sure that I would, you know, take him with like his hat on to
cover his ears so he didn't have to hear certain things or earmuffs on.
(06:18):
And he liked going down into the woods and just hanging out in the woods and
running around, splashing through the leaves. So that's what we used to do.
He didn't like being in places where there was like shopping centers,
lots of echoey noises and sounds. So he'd
I was like, well, he doesn't like it. It's just too much going on.
I didn't actually think all of these things together were adding up to some
(06:41):
kind of sensory processing issue or something going on.
So it wasn't until he started actually at his primary school that they picked
up on it almost immediately and said to me, look, we've noticed a few things.
We call them his maxisms.
We'd like to push him for an assessment just to see if he has some additional
(07:06):
needs of any kind. And I was like, all right.
Okay. Yeah. If that's what you think. Well, I was really surprised.
I was like, I didn't really think there was anything going on there.
I just thought that he, you know, I just understood that he didn't like certain
things and he did things a certain way.
And he has, you know, a great mind on him, a great brain.
(07:26):
He was very slow to start, but I think I have, I actually have a photo of him on my phone.
He was five years old. He'd just come, he'd come home from primary school and he was quiet.
He was in his bedroom. So I went in to see what he was doing and he was sitting
on his bed reading a book and it was the Captain Underpants book.
And I said to him, Max, what are you doing? He said, I'm reading.
(07:49):
I'm reading my book. And I was like, oh, really? And I didn't think he could
read because he literally couldn't read like a few days before.
He really struggled, in fact. So I sat down next to him. I said,
why don't you read me that page? And he read it perfectly.
And he literally just suddenly picked it up like that. And he is exceptionally
gifted at writing and reading.
(08:12):
He's so forward in that. And academically, he just came on leaps and bounds
once he started school. And it was like something clicked.
So academically, I never had to worry about him at all.
And then school said that. So he got put on a list. And we waited.
And then he got seen in 2019. And then he got seen in 2019.
(08:32):
For I think it was like pre-assessments and
stuff like that and they assessed him
and they put him on a waiting list to be assessed further for ASD but they assessed
him and looked at dyspraxia and he came up then on the second percentile which
is actually very poor and that made sense to me as well because I was like you
(08:52):
know he really struggles with any kind of sport he hates it.
He's the kind of person that what he's
good at he loves because he's really good at it
and he loves to be the best he's highly
competitive everything he does he wants
to be the best and if someone is better than him at something it really
frustrates him yeah and he doesn't really understand how
(09:14):
to deal with that frustration so he has to be
the best and if he's not the best he doesn't want to do it he
doesn't like it and sports he's not
the best at because he has no no coordination you know
he struggles really big time with that stuff and I'm
still learning about dyspraxia now like this is very even
though he was kind of put towards this in
(09:37):
2019 it's all still very new to me and I
was given a load of like exercises to take
away and do with him and it was stuff like matching pairs
with cards and things like that right and I've
been working king for years now i do like
exercises with him every day to try and help him with his
like balance and his coordination we brought
(09:59):
loads of games like specifically for that sort
of thing like he's always had dartboards we've got a proper dartboard now but
when he was young we had like a velcro one yeah yes i remember that yeah so
you throw you throw the balls they've got velcro on them they stick on the thing
so games like that games like little indoor crazy golf.
(10:20):
Games to try and help with his coordination and just
like ball catch and things like that right so I've
been doing loads of stuff like that I do like a little
kind of yoga routine with him like an adapted yoga
routine but to help him with his balance and just to help him kind of stretch
and move a little better as well because he was really struggling with movement
(10:41):
and stretching and he's very kind of tight in his limbs and stuff like that
so I wanted to try and help him So anyway,
you know, COVID then hit and we had, you know, home education and that sort of thing.
Oh, before that happened, I actually was speaking to one of his teachers and
(11:01):
she suggested that it might be really beneficial if I wasn't working.
So I was working at the time.
She suggested that it might really benefit him if I wasn't working and that
if I could be at home with him more, just to give him more of my help and time
than what I was able to give.
And I did agree with her. Anyway, then COVID happened. So that kind of.
(11:23):
You know or helped in terms of being at home with
him and he really came on then but still
really struggling with certain things but like i said we kind of
adapted to it and it was even though it was it's like
when you look back and you think god it is hard it's exhausting you know
you'd be dealing with meltdowns when things don't go
away now he's not five or six anymore he's
(11:45):
older than that but he's you know
coming into his teenage years so the meltdowns are
different and they happen over other different things
because you know whereas before he would
have a meltdown about a certain type of fabric on
his skin or going up one step at the playground on
the side he wouldn't do that now because he he'd be very embarrassed
(12:06):
yeah you know but he also
chooses his clothes he's very particular about what
he wears it's a certain type of fabric in a certain style
so we stick to that because why would we you know upset him
with something else and you know we
know that he's scared of heights and that he has these these
troubles so we don't push him on things like that but he has issues
(12:27):
processing other things which come up and that can affect him in a whole load
of ways so it's not just meltdowns it can affect him at night time you know
it's with incidents then as well so anyway I've kind of gone well off track
with where I was so basically we got the first referral in 2019 and then I didn't
really push it because of COVID.
We kind of forgot all about it. And I just got into like helping him at home.
(12:51):
And he, you know, like I said, academically, he is so gifted and he is so funny.
He loves to tell a joke. You know, we've got him so many different joke books
and we help him with that.
We help him kind of, you know, get to the funnier jokes and he loves to create
comics and creative writing. And like I said, he loves reading.
So we really help him work on all of those things.
(13:14):
And he loves making people laugh so socially and academically, he really is.
Seems to be flying, but it's what people don't see where, you know, where the need comes in.
Anyway, he was back in school, obviously last year.
And I spoke to one of his teachers and she said to me, what's happening with his assessment?
(13:34):
Cause that seems to have really stopped. And I said, honestly,
I don't know. I'd kind of forgotten all about it.
And she said, we really need to push that forward before he goes to secondary,
because obviously we've been, his primary school, can I just say have been absolutely excellent.
They, without a diagnosis, they knew.
They just, they obviously have met so many children.
They knew where he needed help. They got him an SNA teacher.
(13:58):
They put him in for the additional classes and support that he needed.
And they've gone really above and beyond, I think, in helping us.
I mean, maybe that's what schools normally do, but I just, I'm so grateful to
them because if it wasn't for them, none of this would have come about in the
first place. and they have been so good with helping me navigate things as well.
(14:19):
Because I didn't have a clue. Like if it wasn't for the school,
I wouldn't have been able to get any of the help that has been offered for Max
because I wouldn't have thought there was anything different.
I would have just been on with it.
So because of the teacher saying that to me, we started pushing.
I had to get in touch with the Children's Disability Network.
(14:39):
Find out what was going on with his application and they were saying to me it's
imperative that we get that in before he starts secondary school because they
will not give him that level of help,
without proper diagnosis they won't be like us you
know they will need the diagnosis to do anything they won't just take your word
for it or our word for it so we had to push so the pre kind of preliminary preliminary
(15:02):
I can't say that word that was in 2019 so they did the other one in 2021,
when he finally got seen by psychiatrists and a
few other people and they came back and
said yeah he's autistic he's ASD so
(15:22):
we need to get all of these supports in place we need to do this we need to
do this and there was just you know a lot of stuff to do but they have been
so good and his psychiatrist she has again gone above and beyond in helping
me i actually even emailed her the other day even though no hang on when was
it wasn't 2021 what year are we now 24 it was 2023.
(15:42):
When the when we met his psychiatrist
for the first time and he was he's signed
off with them since pretty much since his diagnosis came
through and he was referred on then to occupational therapy but the
psychiatrist that helped us then lynn i actually emailed her
the other day to ask her for some help and
advice and support and she straight away
(16:04):
came back to me with exactly what i needed
you know they're brilliant they've been really really good because obviously
i've heard of autism you know i knew a little bit
about it but it's so very there's so
much to it there's so much i didn't know and one
of the things she said to me and mike i actually said this to you earlier
on one of the things she said to us when we when we
(16:26):
went in for the meeting after you know to see what
the report was she said to us how have
you managed all this time you know without any extra support
how have you coped and I said to her it's I don't see it as being how have we
managed with a you know a difficult child yeah he's had things that he doesn't
(16:47):
like and things that he does like and things that he gets obsessive about and
things like that but it's just.
It's just our life it doesn't feel like we've been
managing it feels like we've been doing really well yeah i
mean we've just been doing what we need to do for him
and and yes it's meant sacrifice it's meant me
giving up work and us struggling financially you know
(17:08):
and trying to get the things he needs and do what
he needs and we didn't know that there was any
way that we could get any extra help or support with that but we
made those sacrifices because you do do that as a parent it's just it's just
normal what you do for your child and I honestly wouldn't have picked up on
anything because a lot of the things that that they picked up on that Max does
(17:31):
are things that I myself do so for me it was just like,
But isn't that normal? No? Okay.
So he comes from obviously a neurodivergent family, so it only makes sense that
he would be neurodivergent himself.
And then when he was seeing his occupational therapist, she said to me,
(17:52):
we need to look more at the dyspraxia.
So he's since got a diagnosis of DCD as well, which is dyspraxia.
And he actually, when he was first checked for that back in 2019,
he came back in the second percentile which is very very low in the red zone
they said for you know how bad it can be and he's come back now in the fifth
(18:13):
percentile so like she said although,
it's improved a little bit and I obviously had to explain to her
what we'd been doing you know in between that time the
exercises we were given the things I've been doing to try and help
him where I could see he needed help even with
all that extra work there's not you know an awful
lot of improvement there so he needs a lot of extra support especially
(18:34):
when he's about to start secondary going up into the secondary with that so
I'm really glad that the diagnosis has been pushed through I'm really grateful
that we've had such a excellent team of people along the way to help us that
have just been so helpful and nice and kind and you know.
(18:54):
I've got a lot to be grateful for with his primary school because I just think
they've been instrumental in getting the best out of him and giving him what
he needed without any official diagnosis.
And I'm so grateful that we were here for that school because I just don't know
if any other school would have done what they've done.
I don't think they do. like just on
(19:14):
that because obviously my mother-in-law has
got two young children who are you know getting
going through their assessments and stuff at the moment and without an
EHCP in the UK that the
schools would won't do anything they literally won't do
anything so they would they don't get any of the additional like you know help
(19:38):
and support that obviously see max got without the diagnosis i know schools
over here obviously a lot on that kind of thing which i do think makes it harder
for parents especially when assessment times are so long.
Yeah they are they're really really and especially with us just
having come out of covid and how i mean
since that thing got ridiculous because if you
(19:59):
think like how many years was that two years three years i
think i won't say two just to be on the safe side it all
blends into one now it's two years it does feel like just one really long year
it's really a whole messed up bit of time but like yeah if you think all of
that time where everything literally was on hold so all that backlog that they've
(20:21):
got to get through on top of what was already a long,
list anyway I mean it's yeah yeah that's just made things really ridiculous
but yeah so it's it It, for me,
it was, I mean, I have, obviously I have another child as well,
and her growing up was completely different.
(20:41):
But to be honest, where I was in my life when I had her as well was completely different.
And I could definitely do things differently if I went back now,
you know, as an older, wiser, more stable person with her.
There's definitely things that I would have done differently.
But at the same time she was so independent and so capable you know that she didn't,
(21:04):
She was so kind of grown up for her age that even at two or three,
she was like a five or six year old and she was completely capable of doing stuff.
Whereas, you know, Max wasn't. So I had to be there for him a lot more.
So, and plus, you know, there's, there's like 11 years between them.
So it was a big age gap.
(21:26):
A lot of shit went down, a lot of shit went down between those two being like,
really, Really, it was like having two separate, like single children.
Does that make sense? Like they weren't like brother and I know they're brother
and sister, but they weren't really like brother and sister because there was
such a big age gap between them. And you know what it's like.
(21:46):
You totally kind of lose track of how hard was it or how easy was it with the
first one? I don't really remember.
I just feel like it was really smooth sailing with Maya.
And I was also so young that I probably didn't worry half as much you know about stuff and,
it was all good whereas with Max I've always been you know
(22:07):
I'm much more of a probably helicopter
parent yeah I think I'm exactly the same like obviously there was a lot going
on for me when Grace was born and a lot going on after she was born but I think
as you're older because Because obviously we both had our first kids when we were quite young.
(22:30):
I was literally just 19 because Grace's birthday is the day after mine.
So I was still a baby, really.
And you don't even know half of the stuff about being a parent.
You wouldn't even know what to look for at all because it doesn't even cross your mind.
And especially when I was 19...
(22:50):
I had a friend who was ADHD, but I only ever knew boys to be ADHD.
I didn't know any autistic people.
I didn't know any people with Asperger's or any other kind of on the spectrum
additional needs. I didn't know anybody.
So I wouldn't even think to piece these things together and say,
(23:15):
oh yeah, I know my child's doing the same things as yours and you've had a diagnosis.
I just wouldn't because I didn't know anyone like it wasn't a
thing yeah so you just don't
think about it and you know I don't really
and I said this to you earlier when we were talking like sometimes
I sit there and think was Grace a really easy
baby or have I just forgotten what
(23:37):
it was like or was that what somebody told me she was
really easy or was she or have I just remembered it wrong
because you know I was obviously in a very
you know not great place back then and
your brain does things as you get older to kind of you
know cover up what actually happens so
yeah it's like when there's such a big age
(23:57):
gap as well i think if people have got kids who are kind of three four
years apart you can see the similarities
in the kids but when there's such a
big age gap it definitely i think makes it that bit harder because i've got
14 years between grace and darcy which is mental you know grace is about to
(24:19):
go off to college and darcy's starting preschool like they couldn't be further
from the developmental scale if they wanted to.
Yeah it's crazy like there's when so far
apart i think it's right like you you just
don't you don't remember everything like
(24:40):
it should be and like both of us had a
lot of trauma and basically just
a lot of shit going on in our lives at the
same time as having our babies and you
know still being still being babies ourselves i mean yeah grace
is 16 now max is 13 now and i was grace's age when i was pregnant that's mental
(25:05):
and like i said it to max i was like i was three years older than you and i
was pregnant with maya and i could not imagine him coping with a baby yeah,
and I thought I knew it all I thought I was so,
grown up and capable and I was a total train wreck in all fairness.
(25:25):
I mean, I had so many issues. I was so unhealed. I was just a mess.
So, yeah, I mean, you don't, and like you said, you don't think like,
oh, I didn't know anyone with autism or ADHD or anything like that when I was that age.
You know, a single person, the closest I knew to it was that my mom worked in
(25:48):
a place down the road from where I grew up that had like adults with Down syndrome and stuff in it.
So the closest to anything like that was still nothing
like that you know it's crazy it's
crazy and so like even then when i had max and wasn't
you know just i didn't really think about
anything like that and it literally wasn't
(26:11):
until he started primary school that those
things were kind of brought to my attention you know that
i i became aware of what people were
seeing that they were were calling his maxisms that
were signs of him having a sensory processing
disorder or you know
dyspraxia i just i didn't know i didn't notice i didn't know i didn't even know
(26:35):
to notice do you know what i mean no i think that's the thing isn't it like
it's not so much like you didn't notice in a kind of you know neglectful way
it's that you wouldn't yeah who to notice because yeah even And it's a lot more spoken about now,
but even potentially 13 years ago when you had Max.
It wasn't as spoken about as it is now.
(26:57):
We have so much awareness now in 2024.
But, you know, in the early 2000s, kind of, you know, to the mid 2000s,
we didn't have that kind of thing.
Like when Grace was born, it was never something that was spoken about.
I remember, you know, I had all my health visitor checks with Darcy.
(27:21):
Now, obviously, I still had Grace when she was at the age of health visitor
checks, but there was things, you know, they were like talking about,
you know, have you noticed this and have you noticed this?
And when they get to this age, if, you know, if you notice any of these things,
it might be worth, you know, checking and keeping a track of.
I don't remember any of that with the health visitor checks with Grace,
(27:45):
them even considering asking, you know, does she have any issues with food or
toys or clothes or, you know, none of that.
It was you know is she having all her fruit and veg yeah brilliant she should
be doing this at this age she is perfect like there was none of that like so
(28:06):
I think there's so much more.
Awareness now which is really good so it's not necessarily
that you didn't notice that this that you just
didn't know to notice like yeah I
didn't you know I don't I don't think that grace has
has any of that but I have started kind of
thinking that potentially potentially Darcy might and that was
(28:26):
brought to my attention by somebody else kind of
saying to me I think there might be a sensory thing there and then
I started looking and kind of taking note and
talking to friends who I know that have children and they're like yeah you know
mine did that when they were younger and yeah that sounds quite similar to to
what mine do and but if you don't have that information how are you supposed
(28:48):
to know yeah exactly I mean you just think like Like with Max back then,
he was a little bit late doing stuff, but people just said to me, oh, he's a boy.
And they still do. That phrase is still said. You hear, oh, it's the quick thing.
Yeah. They're slower to do that. Yeah. Yeah.
That's just what I thought. And then like a lot of the things like the whole
(29:11):
kind of fabric and like he was always sucking on wool, woolen thing,
blankets, the way he didn't like certain fabrics against him. I'm like that.
Yeah, because that's the other thing as well.
That's that's the other thing, especially when you do those things.
It makes you think that, you know, that's totally normal because normal.
(29:33):
Yeah like Darcy has weird things when it comes to certain foods but I don't
like certain foods because they
have a weird texture like you know that's that's just normal as far as.
I'm concerned so you wouldn't think that oh actually
that along with a few other things comes together as
a potential sensory issue like you just
(29:54):
you don't even think about it yeah it's crazy
like there's you know and that's a lot of
how I felt and like what you were saying at the beginning if
we could go back in time is there anything that I would change
and yes if I could go back in time I would
have I would go back in time and push for the
help sooner for him so it was all in place
(30:15):
you know and now like I said I am so
grateful to his primary school for just putting that help
in place already but if we'd have gone
through the diagnosis a lot sooner I could have learned a
lot more and maybe things could have been different you know
maybe I could have got more help for him yeah
so like if i feel
(30:38):
like maybe if i'd pushed for the
help sooner like when it first kind of went through even in 2019 when he was
eight years old it's still a little bit old really it could have happened sooner
but then saying that when it went when the first kind of.
(30:59):
Assessment went through in 2019 he was eight so he
started primary school when he was five so that still took
three years to come through so I feel like now
like now looking back like he
you know he's always struggled with writing
he gets a lot of pain in his hands when he writes
thing is he loves writing he loves creative writing.
(31:20):
But he's fine on he uses my laptop
a lot at home for like projects and you
know things like that and he'll spend hours creating his
little comic books and you know his stories and stuff but
I just feel like now he you know he's able for
assistive technology and different supports like that
because of having his DCD diagnosis
(31:43):
and things like that are going to be really beneficial.
To him so you know
things like that make me wish that I'd pushed when
he was younger I hadn't just you
know ignored kind of signs or things that I thought was
that's a bit weird that he does that but okay
he's just my typical weird child you know
(32:05):
where I wish that I'd felt more confident to
push for the diagnosis and when
he was first you know the pre-assessment thing in 2019
I wish that I'd have not brushed it
off so much and pushed harder then for more to
happen because only because it would
have got him the different sort of help and you
(32:27):
know even advice for for me as a parent what i
can do to help which i've got since from you
know from his psychiatrist from his occupational therapist they've been so good
in helping me you know things that he's struggled with like we they're abbreviated
to adls right and i actually She had to Google it because even when the occupational
(32:49):
therapist was talking to me and she was like.
Oh, the ADLs, you know, he needs support in all of his ADLs.
Like he's never been independent with them.
And I was like, yeah, yeah. And I was like, quick, get my phone out,
go on Google. What's an ADL?
It's an activity of daily living. And that's so true because the things that
I was even saying this to you earlier, the things that we take for granted that
(33:10):
we do without any thought to our actions, even like getting up, cleaning,
going to the toilet, cleaning your teeth, washing your face,
you know, those kind of actions are almost alien to him.
Yeah. It's not something that he just does without like having a shower,
the wash routine, those kind of things. Yeah.
(33:32):
Take a lot of this like a part of
your brain that distracts your effects which is
to do with planning and organization and like your executive functioning
and his doesn't work so he
doesn't do those things without the prompting
or like you know it took he couldn't wash himself until he
was quite a you know a lot older than than what
(33:54):
a normal child would and even at that he still needs the
prompting okay you have to remember to do this you have to remember to
do that have you you done that have you done this have you done that we have like
laminated lists on the shower
and things you know just to help him now you do this now you do that
now you do this so little steps like that
that we've brought in to make his life easier could have
happened a lot longer ago and we could have helped him you know gain a better
(34:18):
sense of independence now he doesn't he's not independent he still needs us
there for you know the everyday daily things and And I know it's classed as a disability.
And this is another thing that comes into it. I don't like to label him as disabled
because he's, in fact, so bright.
(34:39):
Like I keep saying, he's so academically gifted.
He's a great group of friends. He's very social with his friends.
Well, I say he's very social with his friends when he's at school.
When he's at home, he doesn't initiate social activities with his friends.
So he likes to be at home. When he's at home, he likes to be at home.
(35:01):
He doesn't want to go and hang out with people.
It's very hard for him to do that. A whole day at school takes it out of him.
He has to decompress when he comes home.
So when it's the weekends, when it's his holidays, he likes to be in his comfort,
his safe bubble, so he can decompress, let all that stress that he's had throughout the day,
(35:21):
having to do certain things, wear certain clothes, all of these things,
which is very hard for him.
He needs that time to decompress and it
doesn't make him weird or strange that he doesn't want to go hang out
as with his friends as some people have said to
me about him some people even near
where i live that have thrown insults oh he's so
weird just staying in his room all the time so disrespectful and it really just
(35:46):
shows how ignorant some people still are that he stays in his room because that's
his safe zone and his comfort zone he's happy and he's very social like Like
if he gets on the PlayStation and he's gaming and his friends are online, he's.
Chatting away having a great time he's in his
comfort zone you know and it's all good for him there and I
(36:06):
think I just went way off topic again
there with what I was what I was saying so I
kind of lost the track of where I was going but it's I think
it's something that can make people struggle about
whether they want you know do we get a diagnosis for our
child or not are we just are we
just being you know like what I
(36:27):
used to think beforehand like when he first asked what his
diagnosis was is this just him like is
it do you need a diagnosis because his disability isn't
a visible one and he's very good at masking yeah
and he's very good at masking when he's out in public so it
only becomes more pronounced than when he's at home with us
and he can relax and be yourself and it's very
(36:49):
hard you know people have always assumed
and people people always assume and make judgment when
they don't know someone i have invisible illnesses so
i know what it feels like for people to say oh sure you look
fine oh you look good yeah yeah
okay i'm glad that you think i look good but just because
you think i look good does not mean that i'm not dealing with
(37:11):
a whole heap of crap under the surface yeah it's the same for
him you know people think people can think
what they like at the end of the day but that kid
is so able in some ways but
he's because his brain is wired up differently and.
You know like when we.
(37:31):
Had to tell him that he had a diagnosis of autism he you
know he saw the bright side and he's like so it's basically like a superpower
because you're explaining to him about how it means your brain is wired up differently
so you can't do some things the same as other people can you're really good
at doing this you're really good at doing that you know that's what he was like so basically
(37:52):
a superpower then mum and I was like yeah kind of is you know because he struggles
to do what we call an ADM which is an activity of daily living so he struggles
with the things that we take for granted and it's really hard to kind of understand
that until you see it in practice,
and then because he has ASD as well that kind of amplifies and heightens a lot
(38:14):
of it so yeah he's very intelligent he's very chatty and he seems like he's
very social when he's at school and in school.
He doesn't want to really socialize with his friends outside of school,
not because he's not social and he doesn't enjoy being with his friends,
but because it's just too much.
Yeah. Too much after a whole week at school. Yeah. He needs that time. Yeah. And I think...
(38:37):
That for one this is
where the thing comes in with getting a diagnosis because you've got people our age
right that are parents now to probably
a bit of a younger generation mostly unless they
were like us and had their children very young but then
there's still be young adults right so you've got like this generation and
the next generation coming through that has a lot more understanding of
(39:01):
neurodivergency and how
additional needs can affect you know your
children how they can how they can come across how you can spot those
signs in younger life right so people are getting more
diagnoses diagnoses is that word no
i'm not actually sure what the plural for diagnosis is
i'd like it's probably something really weird like diagnose
(39:23):
i or something stupid they are getting
them more now but you have that kind of thing right
so you have like our parents that were like oh
you know you're making a mountain out of a molehill a kid yeah kids
let them do what they want to do all kids are weird i've yeah i told that before
but oh no kids weird then you get the ones that say i don't want to label my
(39:46):
child which i can also understand as well because back in our parents time there
was a lot of stigma around this sort of thing yeah yeah And a disability was seen as a disability,
you know, and you weren't seen as someone who was disabled and not on par with
the rest of society. And that's so wrong.
I mean, is it Einstein had autism or, you know, all these great people that
(40:10):
were autistic and anyway, I probably got that wrong.
It probably wasn't Einstein. Please correct me, listeners, if I'm wrong.
But yeah, there's a lot of people that have, you know, that you find out now,
oh, this person's autistic, this person's ADHD.
This person's neurodivergent but there's still
that stigma of i don't want to label my child you know
and while i can understand that at the same time i
(40:31):
i have seen firsthand what happens to children whose parents don't want to label
them and they grow up without any supports and help and then they get into places
like a university or whatever where they're away from home for the first time
ever and their whole life falls apart because there is no one there to help
them learn on how to cook,
how to eat, how to dress, how to wash themselves.
(40:53):
And they might excel exceptionally. They might be genius level,
whatever their physics or music or science or whatever course they're doing,
but they just don't know how to look after themselves.
Yeah. And they fall apart. The need isn't there.
Isn't there? Because their daily living activities, they aren't able to do them independently.
(41:16):
Yeah. And I think, to be honest with you, the word disability,
it actually is something, it's a word that I don't actually really like to use.
And technically, you know, as far as the piece of paper goes, I have a disability.
Having a mental health diagnosis is a, you know, a disability, but it has such a,
(41:37):
has such a negative feeling around it
because people use the word in
such a negative way like oh you know they can't do that because they're disabled
and it's like it's such a negative thing but it really shouldn't be and I think
that's why there's still so many people that don't want to label their children
(41:58):
or don't want to get them diagnosed because they don't want a risk of.
People looking at them differently or judging them
and also like you know I've spoken to friends and it's
also like they feel like if their
child has additional needs it's because they did something wrong as a parent
like they brought them up wrong you know that's why you know oh my child's got
(42:23):
you know an additional need I obviously wasn't a good enough mum and that that's
something that happens.
And that comes from just the judgment that comes from people.
But I think like having spoken to friends that I have, you know,
I've spoken with you about it, and a few of my other friends that have children
with diagnosed additional needs, the biggest thing they come across is people
(42:44):
just being like, oh, no, it's nothing.
Don't overthink it. They're just kids, you know, boys will be boys or,
oh, you know, she's just an odd one or it's
like but it's not like that or the
worst one of thinking they're actually ever going to be able to recover from
it or just yeah like there's still work to be done there like you know that's
(43:07):
the worst part like that's the thing and I'm you know I don't know for definite
if the little things I'm picking up in Darcy is anything she is too so it is
you know she is quite young I'm,
you know, to be 100% sure,
but maybe it is better to just check and, you know, the age old phrase of it's
(43:29):
better to be safe than sorry.
And if it means that I find out, yes, there is something,
but it also means that she's going to get all of the support as soon as she's
at the right age for it, rather than having to go through however many years
of schooling and life without it, then I guess it's a good thing, isn't it, really?
Really oh yeah 100 and like we
(43:51):
were talking about this the other day for people
our age you find a lot of women nowadays are getting diagnosis of autism or
adhd late in life because it wasn't picked up when we were younger and we were
talking about this the other day and and i was saying to you like the amount
of us have gone through life with like.
(44:14):
Told that we have mental health problems like anxiety depression or
people just calling us lazy or oh they're
just chaotic or train wrecking you know
all of these kind of nasty terms that have been
used and you think all of that because we
weren't you know our parents didn't didn't know any better
and we didn't get a diagnosis when we were younger so now we
(44:36):
know that a lot of those symptoms the chaos the
kind of manic episodes which come with adhd of
doing everything all at once and you know hyper fixating
on something or going crazy spending all your
money on a shopping trip because you're looking for a dopamine fix to then
the crashes where you literally sit on your floor and can't you
you want to get up and clean the house and you want to do things
(44:59):
but you can't and your house is a mess you know like my
house used to be an absolute mess like
an absolute shit pit and i would really want to clean
it up but my brain i just wouldn't be i'd be frozen now
we know that that is part of the adhd spiral and
you know so there's years that i've lived being called lazy or messy chaotic
(45:23):
and just you know all those little things that then pick at your self-esteem
and and make it hard it makes it harder you know to hold down a job you struggle.
To hold down a job because you're all into it for a few weeks and
then the novelty wears off the dopamine is gone and you're like oh i
can't stick to this job and then i see you know i used to look at other people
that are in jobs for 10 years and i think how do they stay in the same place
(45:46):
for that length of time but then it you know then when you look at it as an
adult and you think god if i'd had a diagnosis when i was a child i would have
learned a lot better coping.
Strategies maybe i would have been medicated you know i would have had supports
in place and people People would know that there was a reason for my episodes, right? Yeah.
But now as an adult to get a diagnosis, we are looking at paying an awful lot
(46:10):
of money for being on the waiting for potentially years and years,
you know, and not really.
It's so much harder. So if you have an inkling that your child might have an
additional need or something of some thing, I think knowing what I know now
compared to what I knew beforehand,
push for a diagnosis as soon as you can and
(46:31):
get those supports in place because you'll make life so much
easier for your child than if they're trying to do it when they're older and
what I can say as well is that like between our parents time and the kids that
are growing up now like you made a really good point about this the other day
and I don't know if I can remember exactly how you said it but it's like we're
(46:52):
that pivot between the old and the new yeah we're like our parents,
We're the generation that is going to break the mold, I think,
as far as parenting is concerned.
And I don't think this is any, there's nothing wrong.
I need to figure out how I word this so it doesn't offend an entire generation of people.
(47:15):
There are people that did things wrong in parenting. But there's nothing wrong,
really, with the way that our parents were parenting us.
They just learned how to do it from their parents.
The problem is they learned it from their
parents their parents were the 1800s the
whole world was a completely different world that
(47:37):
we live in yeah so yes it's
you know they were just leading by example they you
know they followed how their parents parented them
and whether they liked it or not it was just programmed
of this is how you treat children children are
seen and not heard you can you know you can hit your
kids if they're naughty you can yeah you lock them
(47:59):
in their bedrooms if they're naughty you can do all these things because
that's what they were taught is parenting but as things
have evolved and we've evolved as people and services
have been put in place and research has been done
and studies have been done we've uncovered so much
about about the human like humans and
(48:19):
how we operate and how our things work and how
like you know the whole nature versus nurture thing
and sometimes these are just natural things that they're just born into you
and it's then up to us as parents to figure those out and to help them navigate
and I think because we have the knowledge that our parents didn't necessarily have because
(48:43):
they learned from their parents and you know, that kind of thing. Like, like.
You know, we're the ones that are kind of in charge of being like,
OK, let's make sure that, you know, we aren't leaving people unattended when
they need help, unsupported when they need it.
Like, you know, if you need the additional help, get it. If you need the medication, take it.
(49:05):
If you need the therapy, do it. Like, don't make a big deal out of,
you know, oh, well, that's just not how it was done.
And that's not how I was raised, because it's our job to kind of break that
generational pattern that keeps happening of, you know, people going undiagnosed and suffering.
(49:25):
And that goes for everything. we're talking here specifically about children
with additional needs but this goes for.
Medical conditions mental health conditions physical conditions you know anything
like i don't see i don't see where the problem is and i don't know if this is
just because i am one of those people that is medicated that has you know had
(49:49):
to wear the badge of being the crazy person
because I had bipolar in the early 2000s when
nobody even knew what that was so I was just insane you know
like I don't that's just made me kind
of the kind of person now that's a bit like well I
don't care what you think because I'm doing what's right for me
but I don't see I don't think there's
(50:11):
a problem with it and I think it is our responsibility especially if you're
a parent to make sure that if you see something in your child that is potentially
going to make their life hard it's your responsibility to make it easier that's
that's our job yeah awful.
100 and that like i i love
(50:33):
the way you said that because when you when we were talking
the other day and you said that i hadn't at all thought of
it but when you said that i was like oh my god it's so
true like the 80 early 1800s even early 1900s how
life was back then if you think about it
the internet appeared in in our generation
so that's when like information suddenly
(50:55):
became available at the click of a finger and that's why we've
progressed so much as to what our parents were
and what their parents were you know we have so much knowledge available at
the click of a fingers now which they didn't have and that's how things have
changed and and you're so dead right like if you think there's something that
could be looked at it's your duty as a parent yeah it's your job for that and because it's.
(51:22):
Again, I don't like saying disability and I don't like saying disease because
it's none of those things because it's a rewired, kind of a different wiring to the mind.
These things that we're talking about, they're not visible.
So, I mean, if your child had a cut on their arm that was constantly bleeding,
you wouldn't just leave it and say, oh, it's nothing.
Three years later, nah, it's still nothing. Well, it's still
(51:45):
dripping away blood and they're really anemic and struggling yeah
you know when you could just you could just put a plaster on it
and heal that thing right up you know
it's i'm not saying that you can heal asd either before anyone gets but i'm
saying you know if it was a visible thing that you could see you deal with it
(52:05):
straight away because it's something that you can't really see unless you know
what you're looking for and i I didn't, you know,
and I will forever kick myself about that, that I didn't see sooner.
But like you said, it wasn't because I was being neglectful.
It's because I didn't know any different.
And because a lot of the things that were brought up were things that I myself
(52:26):
do because they were things in me that went undiagnosed. Yeah.
So, you know, it's just, it's just that, that thing,
like just because you can't see something doesn't mean it's not there and it's,
it's not causing difficulties and doesn't mean
it should be belittled or ignored or
made fun of or ridiculed or any of those
(52:48):
kind of things which which does still happen even
in this day and age but i do personally believe
that the next generation like our kids they're gonna have so much more ability
in this sort of area than what we do they're so like they're minded like oh
they are crazy it it's kind of it's kind of weird like Like,
(53:11):
and this is, you know, I don't want to go off on too much of a different topic,
but it's like I'll sit and talk to Grace about things.
And she's so open-minded about loads of stuff, but then so, like,
naive in different ways.
But the stuff that she's open-minded about, that's the kind of stuff that when
she does eventually become a parent, that's the kind of thing she's going to need to know about.
(53:34):
You know, she knows about kids with additional needs.
She has friends that have additional needs. you know, she knows about these things.
She's aware of it. Like, you know, she knows kind of more than,
than I do probably because of taught it now as well.
Like it's, there's so much awareness now, whereas,
(53:55):
you know, and even though diagnosis were being given for things like ADHD to
boys, when I was at school, it was still like came across as.
They're such a naughty child they've got adhd and
it's like and it's not that
at all it came across yeah and without
(54:18):
kind of tangenting massively about that like that is the whole reason that there
are people growing up you nailed it then oh my kid's naughty because they've
got adhd or oh you know so so next door her son's got adhd you must be naughty
they must not discipline him
enough and that kind of stuff thinking it's something the parents actually
(54:39):
can even have any control over like yeah
we have less it's so true like that
the boys that got labeled adhd at
school when i was at school which was few and far between but
the ones that did were what i would call the naughty
ones yeah and it was seen to me
it was like oh yeah so adhd is a naughty thing
(55:00):
it's what you get if you're naughty like you're so
right saying that and i never thought about that until who you just said
that but like yeah and that's just another
stigma on it i know and honestly i feel like
we need to do an entire podcast on different stigmas because i
can propagate on myself it's about this that's just total blow my
mind and i'm just joking like i can get so on my soapbox when it comes to the
(55:23):
way people pass judgment on stuff yeah like i would love to do an episode on
that because i'm gonna write that down my soapbox about that as well i'm writing.
It down it's going on the list like i have had judgments
thrown my way for some of the more stupid things
yeah like even down
(55:43):
to my hairstyle oh don't every
time when i i went through my crazy hairstyle phase where
i was every color the rainbow yeah everyone was
just there was always the funny looks in the street because
i had pink hair i'm like what am i gonna do i'm
not gonna hurt you because my hair's pink okay i'm just a bit
manic all right and now you couldn't even
(56:04):
get a job if you had like crazy hair back when you were
in our 20s and i now cover my
tattoos take all my piercings out if i
even wanted to be i had to cut my dreadlocks out had to
cut all my dreadlocks out for a job before that is
outrageous yeah you weren't allowed tattoos or piercings and that is so different
now no 100 i've written that down we're going to do a podcast on stigma and
(56:28):
judgment that's going to be be fun yeah yeah that'd be a long one yeah sorry
not sorry but yeah so so like just rolling rolling this episode up.
My advice as a parent to a child with additional needs is don't ever feel like
you're being too much or difficult or awkward.
(56:50):
You're doing what you think is best for your child. So if that means pushing
for a diagnosis, even when they're young, do it.
Because, you know, at the end of the day, the worst thing will happen is one
of the experts that goes and gives your child a diagnosis will say, no, they're fine.
You've got nothing to worry about. or they'll say
(57:10):
yeah okay so we've come back and
we've seen that you know they've scored this on this test this
on this test this on this test and that shows us that they on
the spectrum that they will need extra help and supports here we can put you
in touch with these people these people these people yeah yeah yeah and then
your child's going to get all the help and support it's one of two options that's
going to come through and but you can never both of them are great outcomes
(57:34):
yeah so So you can just never feel like you're being too much.
And I think that's probably for our generation because I think the next generation
isn't going to ever feel that. No, I agree.
So yeah, I just want to say, guys, thanks so much for tuning in to us again.
We appreciate you all very much. As you know, if you are a parent of a child
(57:55):
with additional needs, we would love to hear from you and hear your story and how it's gone for you.
So you can find us on facebook on tech talk remember to give us a follow and
a like leave us a review if you like the podcast and we will hopefully hear
from you soon so thanks very much.
Hello and welcome to another episode of the Two Charlottes Spill the Tea.
This week we are going to follow on from the conversation we had last week about
parenting and single parenting struggles,
but this time we're going to address the kind of topic of children with additional
needs, but not so much the children, but more from the side of the parents.
(00:20):
So, you know, the struggles, the pitfalls, but also the things that you do differently
if you could go back and do the whole process again.
So, you know, I don't personally have too much kind of experience in here.
So I am going to quickly pass over to Charlotte because she has a lot more experience in this area.
And then we can kind of discuss because we've had quite a few conversations
(00:43):
recently, you know, about signs and things that we're picking up with,
you know, our kids and it's become a bit of a topic of our conversations.
So we thought we'd discuss it with you guys so I'll pass over to Charlotte and
she can talk about her experience.
Hi guys yeah so parenting children
(01:03):
with additional needs is it's
crazy because it's it's something that I always thought
would be really really hard and
I don't want to detract from the fact that actually it is really
hard but for me and my
experience and what I've had it it wasn't that
(01:24):
I found it easy it was that I didn't know
it was any different I didn't know with my
son that there was anything different it
was just the way things had always been so the things that he struggled with
growing up were just things that he'd always struggled with and I adapted to
suit his needs and work with him so it was things I suppose like he was kind of late developing,
(01:50):
but like people always said to me, oh, boys are always later than girls.
I have a daughter, she's a lot older and she was premature.
I was told she would always be behind. She would struggle to catch up with anyone,
but actually she was very advanced and was kind of hitting the milestones early.
So I was like, well, right. Okay. She's very, you know, very advanced.
(02:13):
She was well able for play school when she started play school and, you know, just.
Very capable of you know talking and she
she could read when she started play school basic words and
things like that she could write her own name she could draw pictures
of people you know she she kind of hit all of these things
early she was definitely scatterbrained but so am I so you know things like
(02:37):
putting her shoes on the wrong feet and her trousers on inside out and not really
you know there was no sensory issue she never she wasn't she wasn't what I would
say a hard child to look after.
She was super easy to look after, super advanced, well capable of saying what
she wanted, what she didn't want.
And it was just, it was just very easy. And people used to say to me,
(02:58):
like people in my family used to say to me, oh, you, you got,
you got lucky with that one.
Wait till you have another one.
I'm sure you're going to have a difficult child. Like she never cried.
You know, she wasn't like a tantrum child or a stressful baby.
She was just happy and easygoing all the
time so and and to be honest so
am I so it was kind of like pretty pretty chill then
(03:21):
I had Max and he was also happy and easygoing
but completely different to Maya so he didn't hit the milestones at the right
age but everyone kept saying to me that's boys for you boys are slower they
don't you know pick up like girls do it'll take him a long time he was very
strange about certain fabrics and stuff on him he didn't like them he didn't like
(03:43):
wearing jean, like genie material or it had to be always soft stuff and I kind
of didn't blame him for it. I was like, yeah, it's way more comfortable. Who wants to wear.
Hard tight scratchy jeans when you can
wear like jogging pants you know and he was only like a
baby then you know baby toddler growing up he
struggled with his speech but my brother struggled with his
(04:03):
speech so I thought that was normal my brother had speech therapy you know and
all of that kind of thing when he was younger so people couldn't really understand
him apart from the people that were with him all the time so like I could understand
him you know his friends could or or like my friends could understand him pretty, pretty well.
He didn't really, like I said, he didn't really hit the milestones at the right time.
(04:27):
He struggled with like movement, you know, like running and he couldn't jump.
I remember spending so long trying to get him to jump and he would like put
in all the effort and then his head would go up off his shoulders,
but his feet would stay on the ground.
I did it. I did it. and he was
(04:51):
desperately afraid of heights it always has been
always still is but to the
point where like he wouldn't go up the slide at the playground he would get
to the second step and he'd be screaming blue murder on the floor crying screaming
want to go home hated it but again i understood okay yeah he's got a fear of
heights i didn't really want to push him to you know going Going to the playground
(05:14):
for him was traumatizing.
It wasn't like a place of fun. It was just full of really scary things that
anything kind of higher than one step was just too much for him.
And it was, it wasn't something we could do. I couldn't take him to the playground without a meltdown.
So if we were going to go to the playground, I knew that it was going to be
(05:35):
really hard work for me because he was going to end up getting really stressed
and upset and just be on the floor screaming and crying.
And so I just you know I'd not go to those kind of things with him I'd make
sure that we did things that he liked to do and he liked numbers he liked counting
and he liked putting things in lines so.
(05:56):
That's you know that's what we would do a lot of things like that would you
know that he would like and he wouldn't like being in certain places or doing
certain things so I wouldn't take him to certain places and do certain things.
Or I would make sure that I would, you know, take him with like his hat on to
cover his ears so he didn't have to hear certain things or earmuffs on.
(06:18):
And he liked going down into the woods and just hanging out in the woods and
running around, splashing through the leaves. So that's what we used to do.
He didn't like being in places where there was like shopping centers,
lots of echoey noises and sounds. So he'd
I was like, well, he doesn't like it. It's just too much going on.
I didn't actually think all of these things together were adding up to some
(06:41):
kind of sensory processing issue or something going on.
So it wasn't until he started actually at his primary school that they picked
up on it almost immediately and said to me, look, we've noticed a few things.
We call them his maxisms.
We'd like to push him for an assessment just to see if he has some additional
(07:06):
needs of any kind. And I was like, all right.
Okay. Yeah. If that's what you think. Well, I was really surprised.
I was like, I didn't really think there was anything going on there.
I just thought that he, you know, I just understood that he didn't like certain
things and he did things a certain way.
And he has, you know, a great mind on him, a great brain.
(07:26):
He was very slow to start, but I think I have, I actually have a photo of him on my phone.
He was five years old. He'd just come, he'd come home from primary school and he was quiet.
He was in his bedroom. So I went in to see what he was doing and he was sitting
on his bed reading a book and it was the Captain Underpants book.
And I said to him, Max, what are you doing? He said, I'm reading.
(07:49):
I'm reading my book. And I was like, oh, really? And I didn't think he could
read because he literally couldn't read like a few days before.
He really struggled, in fact. So I sat down next to him. I said,
why don't you read me that page? And he read it perfectly.
And he literally just suddenly picked it up like that. And he is exceptionally
gifted at writing and reading.
(08:12):
He's so forward in that. And academically, he just came on leaps and bounds
once he started school. And it was like something clicked.
So academically, I never had to worry about him at all.
And then school said that. So he got put on a list. And we waited.
And then he got seen in 2019. And then he got seen in 2019.
(08:32):
For I think it was like pre-assessments and
stuff like that and they assessed him
and they put him on a waiting list to be assessed further for ASD but they assessed
him and looked at dyspraxia and he came up then on the second percentile which
is actually very poor and that made sense to me as well because I was like you
(08:52):
know he really struggles with any kind of sport he hates it.
He's the kind of person that what he's
good at he loves because he's really good at it
and he loves to be the best he's highly
competitive everything he does he wants
to be the best and if someone is better than him at something it really
frustrates him yeah and he doesn't really understand how
(09:14):
to deal with that frustration so he has to be
the best and if he's not the best he doesn't want to do it he
doesn't like it and sports he's not
the best at because he has no no coordination you know
he struggles really big time with that stuff and I'm
still learning about dyspraxia now like this is very even
though he was kind of put towards this in
(09:37):
2019 it's all still very new to me and I
was given a load of like exercises to take
away and do with him and it was stuff like matching pairs
with cards and things like that right and I've
been working king for years now i do like
exercises with him every day to try and help him with his
like balance and his coordination we brought
(09:59):
loads of games like specifically for that sort
of thing like he's always had dartboards we've got a proper dartboard now but
when he was young we had like a velcro one yeah yes i remember that yeah so
you throw you throw the balls they've got velcro on them they stick on the thing
so games like that games like little indoor crazy golf.
(10:20):
Games to try and help with his coordination and just
like ball catch and things like that right so I've
been doing loads of stuff like that I do like a little
kind of yoga routine with him like an adapted yoga
routine but to help him with his balance and just to help him kind of stretch
and move a little better as well because he was really struggling with movement
(10:41):
and stretching and he's very kind of tight in his limbs and stuff like that
so I wanted to try and help him So anyway,
you know, COVID then hit and we had, you know, home education and that sort of thing.
Oh, before that happened, I actually was speaking to one of his teachers and
(11:01):
she suggested that it might be really beneficial if I wasn't working.
So I was working at the time.
She suggested that it might really benefit him if I wasn't working and that
if I could be at home with him more, just to give him more of my help and time
than what I was able to give.
And I did agree with her. Anyway, then COVID happened. So that kind of.
(11:23):
You know or helped in terms of being at home with
him and he really came on then but still
really struggling with certain things but like i said we kind of
adapted to it and it was even though it was it's like
when you look back and you think god it is hard it's exhausting you know
you'd be dealing with meltdowns when things don't go
away now he's not five or six anymore he's
(11:45):
older than that but he's you know
coming into his teenage years so the meltdowns are
different and they happen over other different things
because you know whereas before he would
have a meltdown about a certain type of fabric on
his skin or going up one step at the playground on
the side he wouldn't do that now because he he'd be very embarrassed
(12:06):
yeah you know but he also
chooses his clothes he's very particular about what
he wears it's a certain type of fabric in a certain style
so we stick to that because why would we you know upset him
with something else and you know we
know that he's scared of heights and that he has these these
troubles so we don't push him on things like that but he has issues
(12:27):
processing other things which come up and that can affect him in a whole load
of ways so it's not just meltdowns it can affect him at night time you know
it's with incidents then as well so anyway I've kind of gone well off track
with where I was so basically we got the first referral in 2019 and then I didn't
really push it because of COVID.
We kind of forgot all about it. And I just got into like helping him at home.
(12:51):
And he, you know, like I said, academically, he is so gifted and he is so funny.
He loves to tell a joke. You know, we've got him so many different joke books
and we help him with that.
We help him kind of, you know, get to the funnier jokes and he loves to create
comics and creative writing. And like I said, he loves reading.
So we really help him work on all of those things.
(13:14):
And he loves making people laugh so socially and academically, he really is.
Seems to be flying, but it's what people don't see where, you know, where the need comes in.
Anyway, he was back in school, obviously last year.
And I spoke to one of his teachers and she said to me, what's happening with his assessment?
(13:34):
Cause that seems to have really stopped. And I said, honestly,
I don't know. I'd kind of forgotten all about it.
And she said, we really need to push that forward before he goes to secondary,
because obviously we've been, his primary school, can I just say have been absolutely excellent.
They, without a diagnosis, they knew.
They just, they obviously have met so many children.
They knew where he needed help. They got him an SNA teacher.
(13:58):
They put him in for the additional classes and support that he needed.
And they've gone really above and beyond, I think, in helping us.
I mean, maybe that's what schools normally do, but I just, I'm so grateful to
them because if it wasn't for them, none of this would have come about in the
first place. and they have been so good with helping me navigate things as well.
(14:19):
Because I didn't have a clue. Like if it wasn't for the school,
I wouldn't have been able to get any of the help that has been offered for Max
because I wouldn't have thought there was anything different.
I would have just been on with it.
So because of the teacher saying that to me, we started pushing.
I had to get in touch with the Children's Disability Network.
(14:39):
Find out what was going on with his application and they were saying to me it's
imperative that we get that in before he starts secondary school because they
will not give him that level of help,
without proper diagnosis they won't be like us you
know they will need the diagnosis to do anything they won't just take your word
for it or our word for it so we had to push so the pre kind of preliminary preliminary
(15:02):
I can't say that word that was in 2019 so they did the other one in 2021,
when he finally got seen by psychiatrists and a
few other people and they came back and
said yeah he's autistic he's ASD so
(15:22):
we need to get all of these supports in place we need to do this we need to
do this and there was just you know a lot of stuff to do but they have been
so good and his psychiatrist she has again gone above and beyond in helping
me i actually even emailed her the other day even though no hang on when was
it wasn't 2021 what year are we now 24 it was 2023.
(15:42):
When the when we met his psychiatrist
for the first time and he was he's signed
off with them since pretty much since his diagnosis came
through and he was referred on then to occupational therapy but the
psychiatrist that helped us then lynn i actually emailed her
the other day to ask her for some help and
advice and support and she straight away
(16:04):
came back to me with exactly what i needed
you know they're brilliant they've been really really good because obviously
i've heard of autism you know i knew a little bit
about it but it's so very there's so
much to it there's so much i didn't know and one
of the things she said to me and mike i actually said this to you earlier
on one of the things she said to us when we when we
(16:26):
went in for the meeting after you know to see what
the report was she said to us how have
you managed all this time you know without any extra support
how have you coped and I said to her it's I don't see it as being how have we
managed with a you know a difficult child yeah he's had things that he doesn't
(16:47):
like and things that he does like and things that he gets obsessive about and
things like that but it's just.
It's just our life it doesn't feel like we've been
managing it feels like we've been doing really well yeah i
mean we've just been doing what we need to do for him
and and yes it's meant sacrifice it's meant me
giving up work and us struggling financially you know
(17:08):
and trying to get the things he needs and do what
he needs and we didn't know that there was any
way that we could get any extra help or support with that but we
made those sacrifices because you do do that as a parent it's just it's just
normal what you do for your child and I honestly wouldn't have picked up on
anything because a lot of the things that that they picked up on that Max does
(17:31):
are things that I myself do so for me it was just like,
But isn't that normal? No? Okay.
So he comes from obviously a neurodivergent family, so it only makes sense that
he would be neurodivergent himself.
And then when he was seeing his occupational therapist, she said to me,
(17:52):
we need to look more at the dyspraxia.
So he's since got a diagnosis of DCD as well, which is dyspraxia.
And he actually, when he was first checked for that back in 2019,
he came back in the second percentile which is very very low in the red zone
they said for you know how bad it can be and he's come back now in the fifth
(18:13):
percentile so like she said although,
it's improved a little bit and I obviously had to explain to her
what we'd been doing you know in between that time the
exercises we were given the things I've been doing to try and help
him where I could see he needed help even with
all that extra work there's not you know an awful
lot of improvement there so he needs a lot of extra support especially
(18:34):
when he's about to start secondary going up into the secondary with that so
I'm really glad that the diagnosis has been pushed through I'm really grateful
that we've had such a excellent team of people along the way to help us that
have just been so helpful and nice and kind and you know.
(18:54):
I've got a lot to be grateful for with his primary school because I just think
they've been instrumental in getting the best out of him and giving him what
he needed without any official diagnosis.
And I'm so grateful that we were here for that school because I just don't know
if any other school would have done what they've done.
I don't think they do. like just on
(19:14):
that because obviously my mother-in-law has
got two young children who are you know getting
going through their assessments and stuff at the moment and without an
EHCP in the UK that the
schools would won't do anything they literally won't do
anything so they would they don't get any of the additional like you know help
(19:38):
and support that obviously see max got without the diagnosis i know schools
over here obviously a lot on that kind of thing which i do think makes it harder
for parents especially when assessment times are so long.
Yeah they are they're really really and especially with us just
having come out of covid and how i mean
since that thing got ridiculous because if you
(19:59):
think like how many years was that two years three years i
think i won't say two just to be on the safe side it all
blends into one now it's two years it does feel like just one really long year
it's really a whole messed up bit of time but like yeah if you think all of
that time where everything literally was on hold so all that backlog that they've
(20:21):
got to get through on top of what was already a long,
list anyway I mean it's yeah yeah that's just made things really ridiculous
but yeah so it's it It, for me,
it was, I mean, I have, obviously I have another child as well,
and her growing up was completely different.
(20:41):
But to be honest, where I was in my life when I had her as well was completely different.
And I could definitely do things differently if I went back now,
you know, as an older, wiser, more stable person with her.
There's definitely things that I would have done differently.
But at the same time she was so independent and so capable you know that she didn't,
(21:04):
She was so kind of grown up for her age that even at two or three,
she was like a five or six year old and she was completely capable of doing stuff.
Whereas, you know, Max wasn't. So I had to be there for him a lot more.
So, and plus, you know, there's, there's like 11 years between them.
So it was a big age gap.
(21:26):
A lot of shit went down, a lot of shit went down between those two being like,
really, Really, it was like having two separate, like single children.
Does that make sense? Like they weren't like brother and I know they're brother
and sister, but they weren't really like brother and sister because there was
such a big age gap between them. And you know what it's like.
(21:46):
You totally kind of lose track of how hard was it or how easy was it with the
first one? I don't really remember.
I just feel like it was really smooth sailing with Maya.
And I was also so young that I probably didn't worry half as much you know about stuff and,
it was all good whereas with Max I've always been you know
(22:07):
I'm much more of a probably helicopter
parent yeah I think I'm exactly the same like obviously there was a lot going
on for me when Grace was born and a lot going on after she was born but I think
as you're older because Because obviously we both had our first kids when we were quite young.
(22:30):
I was literally just 19 because Grace's birthday is the day after mine.
So I was still a baby, really.
And you don't even know half of the stuff about being a parent.
You wouldn't even know what to look for at all because it doesn't even cross your mind.
And especially when I was 19...
(22:50):
I had a friend who was ADHD, but I only ever knew boys to be ADHD.
I didn't know any autistic people.
I didn't know any people with Asperger's or any other kind of on the spectrum
additional needs. I didn't know anybody.
So I wouldn't even think to piece these things together and say,
(23:15):
oh yeah, I know my child's doing the same things as yours and you've had a diagnosis.
I just wouldn't because I didn't know anyone like it wasn't a
thing yeah so you just don't
think about it and you know I don't really
and I said this to you earlier when we were talking like sometimes
I sit there and think was Grace a really easy
baby or have I just forgotten what
(23:37):
it was like or was that what somebody told me she was
really easy or was she or have I just remembered it wrong
because you know I was obviously in a very
you know not great place back then and
your brain does things as you get older to kind of you
know cover up what actually happens so
yeah it's like when there's such a big age
(23:57):
gap as well i think if people have got kids who are kind of three four
years apart you can see the similarities
in the kids but when there's such a
big age gap it definitely i think makes it that bit harder because i've got
14 years between grace and darcy which is mental you know grace is about to
(24:19):
go off to college and darcy's starting preschool like they couldn't be further
from the developmental scale if they wanted to.
Yeah it's crazy like there's when so far
apart i think it's right like you you just
don't you don't remember everything like
(24:40):
it should be and like both of us had a
lot of trauma and basically just
a lot of shit going on in our lives at the
same time as having our babies and you
know still being still being babies ourselves i mean yeah grace
is 16 now max is 13 now and i was grace's age when i was pregnant that's mental
(25:05):
and like i said it to max i was like i was three years older than you and i
was pregnant with maya and i could not imagine him coping with a baby yeah,
and I thought I knew it all I thought I was so,
grown up and capable and I was a total train wreck in all fairness.
(25:25):
I mean, I had so many issues. I was so unhealed. I was just a mess.
So, yeah, I mean, you don't, and like you said, you don't think like,
oh, I didn't know anyone with autism or ADHD or anything like that when I was that age.
You know, a single person, the closest I knew to it was that my mom worked in
(25:48):
a place down the road from where I grew up that had like adults with Down syndrome and stuff in it.
So the closest to anything like that was still nothing
like that you know it's crazy it's
crazy and so like even then when i had max and wasn't
you know just i didn't really think about
anything like that and it literally wasn't
(26:11):
until he started primary school that those
things were kind of brought to my attention you know that
i i became aware of what people were
seeing that they were were calling his maxisms that
were signs of him having a sensory processing
disorder or you know
dyspraxia i just i didn't know i didn't notice i didn't know i didn't even know
(26:35):
to notice do you know what i mean no i think that's the thing isn't it like
it's not so much like you didn't notice in a kind of you know neglectful way
it's that you wouldn't yeah who to notice because yeah even And it's a lot more spoken about now,
but even potentially 13 years ago when you had Max.
It wasn't as spoken about as it is now.
(26:57):
We have so much awareness now in 2024.
But, you know, in the early 2000s, kind of, you know, to the mid 2000s,
we didn't have that kind of thing.
Like when Grace was born, it was never something that was spoken about.
I remember, you know, I had all my health visitor checks with Darcy.
(27:21):
Now, obviously, I still had Grace when she was at the age of health visitor
checks, but there was things, you know, they were like talking about,
you know, have you noticed this and have you noticed this?
And when they get to this age, if, you know, if you notice any of these things,
it might be worth, you know, checking and keeping a track of.
I don't remember any of that with the health visitor checks with Grace,
(27:45):
them even considering asking, you know, does she have any issues with food or
toys or clothes or, you know, none of that.
It was you know is she having all her fruit and veg yeah brilliant she should
be doing this at this age she is perfect like there was none of that like so
(28:06):
I think there's so much more.
Awareness now which is really good so it's not necessarily
that you didn't notice that this that you just
didn't know to notice like yeah I
didn't you know I don't I don't think that grace has
has any of that but I have started kind of
thinking that potentially potentially Darcy might and that was
(28:26):
brought to my attention by somebody else kind of
saying to me I think there might be a sensory thing there and then
I started looking and kind of taking note and
talking to friends who I know that have children and they're like yeah you know
mine did that when they were younger and yeah that sounds quite similar to to
what mine do and but if you don't have that information how are you supposed
(28:48):
to know yeah exactly I mean you just think like Like with Max back then,
he was a little bit late doing stuff, but people just said to me, oh, he's a boy.
And they still do. That phrase is still said. You hear, oh, it's the quick thing.
Yeah. They're slower to do that. Yeah. Yeah.
That's just what I thought. And then like a lot of the things like the whole
(29:11):
kind of fabric and like he was always sucking on wool, woolen thing,
blankets, the way he didn't like certain fabrics against him. I'm like that.
Yeah, because that's the other thing as well.
That's that's the other thing, especially when you do those things.
It makes you think that, you know, that's totally normal because normal.
(29:33):
Yeah like Darcy has weird things when it comes to certain foods but I don't
like certain foods because they
have a weird texture like you know that's that's just normal as far as.
I'm concerned so you wouldn't think that oh actually
that along with a few other things comes together as
a potential sensory issue like you just
(29:54):
you don't even think about it yeah it's crazy
like there's you know and that's a lot of
how I felt and like what you were saying at the beginning if
we could go back in time is there anything that I would change
and yes if I could go back in time I would
have I would go back in time and push for the
help sooner for him so it was all in place
(30:15):
you know and now like I said I am so
grateful to his primary school for just putting that help
in place already but if we'd have gone
through the diagnosis a lot sooner I could have learned a
lot more and maybe things could have been different you know
maybe I could have got more help for him yeah
so like if i feel
(30:38):
like maybe if i'd pushed for the
help sooner like when it first kind of went through even in 2019 when he was
eight years old it's still a little bit old really it could have happened sooner
but then saying that when it went when the first kind of.
(30:59):
Assessment went through in 2019 he was eight so he
started primary school when he was five so that still took
three years to come through so I feel like now
like now looking back like he
you know he's always struggled with writing
he gets a lot of pain in his hands when he writes
thing is he loves writing he loves creative writing.
(31:20):
But he's fine on he uses my laptop
a lot at home for like projects and you
know things like that and he'll spend hours creating his
little comic books and you know his stories and stuff but
I just feel like now he you know he's able for
assistive technology and different supports like that
because of having his DCD diagnosis
(31:43):
and things like that are going to be really beneficial.
To him so you know
things like that make me wish that I'd pushed when
he was younger I hadn't just you
know ignored kind of signs or things that I thought was
that's a bit weird that he does that but okay
he's just my typical weird child you know
(32:05):
where I wish that I'd felt more confident to
push for the diagnosis and when
he was first you know the pre-assessment thing in 2019
I wish that I'd have not brushed it
off so much and pushed harder then for more to
happen because only because it would
have got him the different sort of help and you
(32:27):
know even advice for for me as a parent what i
can do to help which i've got since from you
know from his psychiatrist from his occupational therapist they've been so good
in helping me you know things that he's struggled with like we they're abbreviated
to adls right and i actually She had to Google it because even when the occupational
(32:49):
therapist was talking to me and she was like.
Oh, the ADLs, you know, he needs support in all of his ADLs.
Like he's never been independent with them.
And I was like, yeah, yeah. And I was like, quick, get my phone out,
go on Google. What's an ADL?
It's an activity of daily living. And that's so true because the things that
I was even saying this to you earlier, the things that we take for granted that
(33:10):
we do without any thought to our actions, even like getting up, cleaning,
going to the toilet, cleaning your teeth, washing your face,
you know, those kind of actions are almost alien to him.
Yeah. It's not something that he just does without like having a shower,
the wash routine, those kind of things. Yeah.
(33:32):
Take a lot of this like a part of
your brain that distracts your effects which is
to do with planning and organization and like your executive functioning
and his doesn't work so he
doesn't do those things without the prompting
or like you know it took he couldn't wash himself until he
was quite a you know a lot older than than what
(33:54):
a normal child would and even at that he still needs the
prompting okay you have to remember to do this you have to remember to
do that have you you done that have you done this have you done that we have like
laminated lists on the shower
and things you know just to help him now you do this now you do that
now you do this so little steps like that
that we've brought in to make his life easier could have
happened a lot longer ago and we could have helped him you know gain a better
(34:18):
sense of independence now he doesn't he's not independent he still needs us
there for you know the everyday daily things and And I know it's classed as a disability.
And this is another thing that comes into it. I don't like to label him as disabled
because he's, in fact, so bright.
(34:39):
Like I keep saying, he's so academically gifted.
He's a great group of friends. He's very social with his friends.
Well, I say he's very social with his friends when he's at school.
When he's at home, he doesn't initiate social activities with his friends.
So he likes to be at home. When he's at home, he likes to be at home.
(35:01):
He doesn't want to go and hang out with people.
It's very hard for him to do that. A whole day at school takes it out of him.
He has to decompress when he comes home.
So when it's the weekends, when it's his holidays, he likes to be in his comfort,
his safe bubble, so he can decompress, let all that stress that he's had throughout the day,
(35:21):
having to do certain things, wear certain clothes, all of these things,
which is very hard for him.
He needs that time to decompress and it
doesn't make him weird or strange that he doesn't want to go hang out
as with his friends as some people have said to
me about him some people even near
where i live that have thrown insults oh he's so
weird just staying in his room all the time so disrespectful and it really just
(35:46):
shows how ignorant some people still are that he stays in his room because that's
his safe zone and his comfort zone he's happy and he's very social like Like
if he gets on the PlayStation and he's gaming and his friends are online, he's.
Chatting away having a great time he's in his
comfort zone you know and it's all good for him there and I
(36:06):
think I just went way off topic again
there with what I was what I was saying so I
kind of lost the track of where I was going but it's I think
it's something that can make people struggle about
whether they want you know do we get a diagnosis for our
child or not are we just are we
just being you know like what I
(36:27):
used to think beforehand like when he first asked what his
diagnosis was is this just him like is
it do you need a diagnosis because his disability isn't
a visible one and he's very good at masking yeah
and he's very good at masking when he's out in public so it
only becomes more pronounced than when he's at home with us
and he can relax and be yourself and it's very
(36:49):
hard you know people have always assumed
and people people always assume and make judgment when
they don't know someone i have invisible illnesses so
i know what it feels like for people to say oh sure you look
fine oh you look good yeah yeah
okay i'm glad that you think i look good but just because
you think i look good does not mean that i'm not dealing with
(37:11):
a whole heap of crap under the surface yeah it's the same for
him you know people think people can think
what they like at the end of the day but that kid
is so able in some ways but
he's because his brain is wired up differently and.
You know like when we.
(37:31):
Had to tell him that he had a diagnosis of autism he you
know he saw the bright side and he's like so it's basically like a superpower
because you're explaining to him about how it means your brain is wired up differently
so you can't do some things the same as other people can you're really good
at doing this you're really good at doing that you know that's what he was like so basically
(37:52):
a superpower then mum and I was like yeah kind of is you know because he struggles
to do what we call an ADM which is an activity of daily living so he struggles
with the things that we take for granted and it's really hard to kind of understand
that until you see it in practice,
and then because he has ASD as well that kind of amplifies and heightens a lot
(38:14):
of it so yeah he's very intelligent he's very chatty and he seems like he's
very social when he's at school and in school.
He doesn't want to really socialize with his friends outside of school,
not because he's not social and he doesn't enjoy being with his friends,
but because it's just too much.
Yeah. Too much after a whole week at school. Yeah. He needs that time. Yeah. And I think...
(38:37):
That for one this is
where the thing comes in with getting a diagnosis because you've got people our age
right that are parents now to probably
a bit of a younger generation mostly unless they
were like us and had their children very young but then
there's still be young adults right so you've got like this generation and
the next generation coming through that has a lot more understanding of
(39:01):
neurodivergency and how
additional needs can affect you know your
children how they can how they can come across how you can spot those
signs in younger life right so people are getting more
diagnoses diagnoses is that word no
i'm not actually sure what the plural for diagnosis is
i'd like it's probably something really weird like diagnose
(39:23):
i or something stupid they are getting
them more now but you have that kind of thing right
so you have like our parents that were like oh
you know you're making a mountain out of a molehill a kid yeah kids
let them do what they want to do all kids are weird i've yeah i told that before
but oh no kids weird then you get the ones that say i don't want to label my
(39:46):
child which i can also understand as well because back in our parents time there
was a lot of stigma around this sort of thing yeah yeah And a disability was seen as a disability,
you know, and you weren't seen as someone who was disabled and not on par with
the rest of society. And that's so wrong.
I mean, is it Einstein had autism or, you know, all these great people that
(40:10):
were autistic and anyway, I probably got that wrong.
It probably wasn't Einstein. Please correct me, listeners, if I'm wrong.
But yeah, there's a lot of people that have, you know, that you find out now,
oh, this person's autistic, this person's ADHD.
This person's neurodivergent but there's still
that stigma of i don't want to label my child you know
and while i can understand that at the same time i
(40:31):
i have seen firsthand what happens to children whose parents don't want to label
them and they grow up without any supports and help and then they get into places
like a university or whatever where they're away from home for the first time
ever and their whole life falls apart because there is no one there to help
them learn on how to cook,
how to eat, how to dress, how to wash themselves.
(40:53):
And they might excel exceptionally. They might be genius level,
whatever their physics or music or science or whatever course they're doing,
but they just don't know how to look after themselves.
Yeah. And they fall apart. The need isn't there.
Isn't there? Because their daily living activities, they aren't able to do them independently.
(41:16):
Yeah. And I think, to be honest with you, the word disability,
it actually is something, it's a word that I don't actually really like to use.
And technically, you know, as far as the piece of paper goes, I have a disability.
Having a mental health diagnosis is a, you know, a disability, but it has such a,
(41:37):
has such a negative feeling around it
because people use the word in
such a negative way like oh you know they can't do that because they're disabled
and it's like it's such a negative thing but it really shouldn't be and I think
that's why there's still so many people that don't want to label their children
(41:58):
or don't want to get them diagnosed because they don't want a risk of.
People looking at them differently or judging them
and also like you know I've spoken to friends and it's
also like they feel like if their
child has additional needs it's because they did something wrong as a parent
like they brought them up wrong you know that's why you know oh my child's got
(42:23):
you know an additional need I obviously wasn't a good enough mum and that that's
something that happens.
And that comes from just the judgment that comes from people.
But I think like having spoken to friends that I have, you know,
I've spoken with you about it, and a few of my other friends that have children
with diagnosed additional needs, the biggest thing they come across is people
(42:44):
just being like, oh, no, it's nothing.
Don't overthink it. They're just kids, you know, boys will be boys or,
oh, you know, she's just an odd one or it's
like but it's not like that or the
worst one of thinking they're actually ever going to be able to recover from
it or just yeah like there's still work to be done there like you know that's
(43:07):
the worst part like that's the thing and I'm you know I don't know for definite
if the little things I'm picking up in Darcy is anything she is too so it is
you know she is quite young I'm,
you know, to be 100% sure,
but maybe it is better to just check and, you know, the age old phrase of it's
(43:29):
better to be safe than sorry.
And if it means that I find out, yes, there is something,
but it also means that she's going to get all of the support as soon as she's
at the right age for it, rather than having to go through however many years
of schooling and life without it, then I guess it's a good thing, isn't it, really?
Really oh yeah 100 and like we
(43:51):
were talking about this the other day for people
our age you find a lot of women nowadays are getting diagnosis of autism or
adhd late in life because it wasn't picked up when we were younger and we were
talking about this the other day and and i was saying to you like the amount
of us have gone through life with like.
(44:14):
Told that we have mental health problems like anxiety depression or
people just calling us lazy or oh they're
just chaotic or train wrecking you know
all of these kind of nasty terms that have been
used and you think all of that because we
weren't you know our parents didn't didn't know any better
and we didn't get a diagnosis when we were younger so now we
(44:36):
know that a lot of those symptoms the chaos the
kind of manic episodes which come with adhd of
doing everything all at once and you know hyper fixating
on something or going crazy spending all your
money on a shopping trip because you're looking for a dopamine fix to then
the crashes where you literally sit on your floor and can't you
you want to get up and clean the house and you want to do things
(44:59):
but you can't and your house is a mess you know like my
house used to be an absolute mess like
an absolute shit pit and i would really want to clean
it up but my brain i just wouldn't be i'd be frozen now
we know that that is part of the adhd spiral and
you know so there's years that i've lived being called lazy or messy chaotic
(45:23):
and just you know all those little things that then pick at your self-esteem
and and make it hard it makes it harder you know to hold down a job you struggle.
To hold down a job because you're all into it for a few weeks and
then the novelty wears off the dopamine is gone and you're like oh i
can't stick to this job and then i see you know i used to look at other people
that are in jobs for 10 years and i think how do they stay in the same place
(45:46):
for that length of time but then it you know then when you look at it as an
adult and you think god if i'd had a diagnosis when i was a child i would have
learned a lot better coping.
Strategies maybe i would have been medicated you know i would have had supports
in place and people People would know that there was a reason for my episodes, right? Yeah.
But now as an adult to get a diagnosis, we are looking at paying an awful lot
(46:10):
of money for being on the waiting for potentially years and years,
you know, and not really.
It's so much harder. So if you have an inkling that your child might have an
additional need or something of some thing, I think knowing what I know now
compared to what I knew beforehand,
push for a diagnosis as soon as you can and
(46:31):
get those supports in place because you'll make life so much
easier for your child than if they're trying to do it when they're older and
what I can say as well is that like between our parents time and the kids that
are growing up now like you made a really good point about this the other day
and I don't know if I can remember exactly how you said it but it's like we're
(46:52):
that pivot between the old and the new yeah we're like our parents,
We're the generation that is going to break the mold, I think,
as far as parenting is concerned.
And I don't think this is any, there's nothing wrong.
I need to figure out how I word this so it doesn't offend an entire generation of people.
(47:15):
There are people that did things wrong in parenting. But there's nothing wrong,
really, with the way that our parents were parenting us.
They just learned how to do it from their parents.
The problem is they learned it from their
parents their parents were the 1800s the
whole world was a completely different world that
(47:37):
we live in yeah so yes it's
you know they were just leading by example they you
know they followed how their parents parented them
and whether they liked it or not it was just programmed
of this is how you treat children children are
seen and not heard you can you know you can hit your
kids if they're naughty you can yeah you lock them
(47:59):
in their bedrooms if they're naughty you can do all these things because
that's what they were taught is parenting but as things
have evolved and we've evolved as people and services
have been put in place and research has been done
and studies have been done we've uncovered so much
about about the human like humans and
(48:19):
how we operate and how our things work and how
like you know the whole nature versus nurture thing
and sometimes these are just natural things that they're just born into you
and it's then up to us as parents to figure those out and to help them navigate
and I think because we have the knowledge that our parents didn't necessarily have because
(48:43):
they learned from their parents and you know, that kind of thing. Like, like.
You know, we're the ones that are kind of in charge of being like,
OK, let's make sure that, you know, we aren't leaving people unattended when
they need help, unsupported when they need it.
Like, you know, if you need the additional help, get it. If you need the medication, take it.
(49:05):
If you need the therapy, do it. Like, don't make a big deal out of,
you know, oh, well, that's just not how it was done.
And that's not how I was raised, because it's our job to kind of break that
generational pattern that keeps happening of, you know, people going undiagnosed and suffering.
(49:25):
And that goes for everything. we're talking here specifically about children
with additional needs but this goes for.
Medical conditions mental health conditions physical conditions you know anything
like i don't see i don't see where the problem is and i don't know if this is
just because i am one of those people that is medicated that has you know had
(49:49):
to wear the badge of being the crazy person
because I had bipolar in the early 2000s when
nobody even knew what that was so I was just insane you know
like I don't that's just made me kind
of the kind of person now that's a bit like well I
don't care what you think because I'm doing what's right for me
but I don't see I don't think there's
(50:11):
a problem with it and I think it is our responsibility especially if you're
a parent to make sure that if you see something in your child that is potentially
going to make their life hard it's your responsibility to make it easier that's
that's our job yeah awful.
100 and that like i i love
(50:33):
the way you said that because when you when we were talking
the other day and you said that i hadn't at all thought of
it but when you said that i was like oh my god it's so
true like the 80 early 1800s even early 1900s how
life was back then if you think about it
the internet appeared in in our generation
so that's when like information suddenly
(50:55):
became available at the click of a finger and that's why we've
progressed so much as to what our parents were
and what their parents were you know we have so much knowledge available at
the click of a fingers now which they didn't have and that's how things have
changed and and you're so dead right like if you think there's something that
could be looked at it's your duty as a parent yeah it's your job for that and because it's.
(51:22):
Again, I don't like saying disability and I don't like saying disease because
it's none of those things because it's a rewired, kind of a different wiring to the mind.
These things that we're talking about, they're not visible.
So, I mean, if your child had a cut on their arm that was constantly bleeding,
you wouldn't just leave it and say, oh, it's nothing.
Three years later, nah, it's still nothing. Well, it's still
(51:45):
dripping away blood and they're really anemic and struggling yeah
you know when you could just you could just put a plaster on it
and heal that thing right up you know
it's i'm not saying that you can heal asd either before anyone gets but i'm
saying you know if it was a visible thing that you could see you deal with it
(52:05):
straight away because it's something that you can't really see unless you know
what you're looking for and i I didn't, you know,
and I will forever kick myself about that, that I didn't see sooner.
But like you said, it wasn't because I was being neglectful.
It's because I didn't know any different.
And because a lot of the things that were brought up were things that I myself
(52:26):
do because they were things in me that went undiagnosed. Yeah.
So, you know, it's just, it's just that, that thing,
like just because you can't see something doesn't mean it's not there and it's,
it's not causing difficulties and doesn't mean
it should be belittled or ignored or
made fun of or ridiculed or any of those
(52:48):
kind of things which which does still happen even
in this day and age but i do personally believe
that the next generation like our kids they're gonna have so much more ability
in this sort of area than what we do they're so like they're minded like oh
they are crazy it it's kind of it's kind of weird like Like,
(53:11):
and this is, you know, I don't want to go off on too much of a different topic,
but it's like I'll sit and talk to Grace about things.
And she's so open-minded about loads of stuff, but then so, like,
naive in different ways.
But the stuff that she's open-minded about, that's the kind of stuff that when
she does eventually become a parent, that's the kind of thing she's going to need to know about.
(53:34):
You know, she knows about kids with additional needs.
She has friends that have additional needs. you know, she knows about these things.
She's aware of it. Like, you know, she knows kind of more than,
than I do probably because of taught it now as well.
Like it's, there's so much awareness now, whereas,
(53:55):
you know, and even though diagnosis were being given for things like ADHD to
boys, when I was at school, it was still like came across as.
They're such a naughty child they've got adhd and
it's like and it's not that
at all it came across yeah and without
(54:18):
kind of tangenting massively about that like that is the whole reason that there
are people growing up you nailed it then oh my kid's naughty because they've
got adhd or oh you know so so next door her son's got adhd you must be naughty
they must not discipline him
enough and that kind of stuff thinking it's something the parents actually
(54:39):
can even have any control over like yeah
we have less it's so true like that
the boys that got labeled adhd at
school when i was at school which was few and far between but
the ones that did were what i would call the naughty
ones yeah and it was seen to me
it was like oh yeah so adhd is a naughty thing
(55:00):
it's what you get if you're naughty like you're so
right saying that and i never thought about that until who you just said
that but like yeah and that's just another
stigma on it i know and honestly i feel like
we need to do an entire podcast on different stigmas because i
can propagate on myself it's about this that's just total blow my
mind and i'm just joking like i can get so on my soapbox when it comes to the
(55:23):
way people pass judgment on stuff yeah like i would love to do an episode on
that because i'm gonna write that down my soapbox about that as well i'm writing.
It down it's going on the list like i have had judgments
thrown my way for some of the more stupid things
yeah like even down
(55:43):
to my hairstyle oh don't every
time when i i went through my crazy hairstyle phase where
i was every color the rainbow yeah everyone was
just there was always the funny looks in the street because
i had pink hair i'm like what am i gonna do i'm
not gonna hurt you because my hair's pink okay i'm just a bit
manic all right and now you couldn't even
(56:04):
get a job if you had like crazy hair back when you were
in our 20s and i now cover my
tattoos take all my piercings out if i
even wanted to be i had to cut my dreadlocks out had to
cut all my dreadlocks out for a job before that is
outrageous yeah you weren't allowed tattoos or piercings and that is so different
now no 100 i've written that down we're going to do a podcast on stigma and
(56:28):
judgment that's going to be be fun yeah yeah that'd be a long one yeah sorry
not sorry but yeah so so like just rolling rolling this episode up.
My advice as a parent to a child with additional needs is don't ever feel like
you're being too much or difficult or awkward.
(56:50):
You're doing what you think is best for your child. So if that means pushing
for a diagnosis, even when they're young, do it.
Because, you know, at the end of the day, the worst thing will happen is one
of the experts that goes and gives your child a diagnosis will say, no, they're fine.
You've got nothing to worry about. or they'll say
(57:10):
yeah okay so we've come back and
we've seen that you know they've scored this on this test this
on this test this on this test and that shows us that they on
the spectrum that they will need extra help and supports here we can put you
in touch with these people these people these people yeah yeah yeah and then
your child's going to get all the help and support it's one of two options that's
going to come through and but you can never both of them are great outcomes
(57:34):
yeah so So you can just never feel like you're being too much.
And I think that's probably for our generation because I think the next generation
isn't going to ever feel that. No, I agree.
So yeah, I just want to say, guys, thanks so much for tuning in to us again.
We appreciate you all very much. As you know, if you are a parent of a child
(57:55):
with additional needs, we would love to hear from you and hear your story and how it's gone for you.
So you can find us on facebook on tech talk remember to give us a follow and
a like leave us a review if you like the podcast and we will hopefully hear
from you soon so thanks very much.
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