Hi, my name is Jordan. I am a special education
teacher from the UK. I share my passion for everything
communication, sensory regulation and fun lesson
ideas for my classroom of disabled pupils aged
4 to 11. Each week I am joined by experts in
the field answering your questions and sharing
our knowledge and experience working alongside
our beautiful young people. Let's get started.
Hello everybody and welcome to the Sensory Casting
Podcast. My name is Jordan and today I am joined
by Lisa. Me and Lisa have been friends on Instagram
for probably a decade now. Just really resonated
with our... love for her son, honestly, and his
passion for all things sea creatures. It started
way, way back in the day when I ran a sensory
toy shop. And I've been devoted to her channel,
I suppose, ever since. And I'm so pleased to
watch her grow on social media and share more
about her journey. She knows so much and has
learned so much along the way and has been through
a hell of a lot. So I'm so excited to have convinced
her to come on the podcast today. Hello, Lisa.
Hello, thank you for having me. Thank you so
much for accepting. I was really hoping that
you would because, yeah, we've been chatting
for a hell of a long time now, haven't we? We
have, such a long time, yeah. We've still got
all the little things you made. And the little
bags and ice pie bags. Yeah, he loves them. Yeah.
It was such an honour to create something so
bespoke for him because what he wanted just didn't
exist. So what an honour. Yeah. I think it was
an eggplant elephant, wasn't it? He's very unique
in what he asks for. Yeah, an eggplant elephant,
I think it was. And that was the first thing.
And it was lots of sea creatures. Yes. And I
just love it. And I've been loving following
your journey all through this decade. I think
you were probably about eight or nine when we
first started talking. I think so. He's now turned
18. It's just crazy. And that's what we're going
to talk about today. We're going to talk about...
That move towards adulthood, it's something I
don't know much about at all. So I'm really hoping
that you can enlighten me and my listeners on
what that looks like. But first, before we get
into that, are you all right kind of describing
your setup and how your family fits into this
SEND sphere? Yeah, so originally my background
is in early years and I've worked in lots of
different various settings. And with special
educational needs as well. And then I've gone
on to have Kian. He was diagnosed on the autistic
spectrum when he was three and a half. And then
I've got Grace. She's 10. And she's a little
bit more complicated. She, we believe, has possibly
PANS, PANDAS. Some of you might know about that
or some might not. And then she has gone on to
be also diagnosed on the autistic spectrum. But
the two are kind of overlapping. Yeah, she has
her own individual needs as well. Yeah. And then
I've been on, I think, Instagram for about 10
years now, just sort of sharing. It started off
as play ideas and things like that. And then
I've moved more to wanting to help others and
share our story. And yeah, that's just me. Both
of your children are incredibly different, aren't
they? It shows that you can have a diagnosis
and actually how varied that can be just within
one family. Yeah, definitely. They're very, very
different, different needs. And well, you've
got Kian who you'll know when he's not happy,
he'll be on the floor having a meltdown. Whereas
Grace, she'll hide it more, mask more. And then,
yeah, very, very, very different. But both have
been around the school system in so many different
ways. Yeah, Kian has massively been, I can explain
a little bit about. our journey from what sort
of happened and where we're up to from there
yes so when kean was four he i got him into a
special needs school which was for severe learning
disability um and i thought oh this is brilliant
i've got him into the school i was so happy he
was happy he was thriving and i just thought
this is the school this is where he is like this
is sorted now till he's like 16 that's just what
i thought not really realizing that the school
reviews each time their progress and things like
that and then around when he was I think he was
about eight whose school he was at sort of said
that they feel like he'd be able to move on to
a moderate learning disability special needs
setting at the time I sort of just went with
the advice that yeah there's no reason for that
so I think so he was non -verbal till he was
about five five -ish and then he started to find
his words and just progress a little bit more
and I think like looking back now I don't know
at the time if they were trying to free up space
so they were I don't know but at the time I just
took the advice thinking this you know this is
what I guess this is this is going to be for
the best for Kian but looking back now I don't
think he should have ever left that setting because
he has got quite complex needs so Kian has so
he's autistic He has sensory processing disorder.
He also has a vision impairment, which developed
when he was 13. And he's lost some vision in
his eye. So he has quite complex needs. So then
he moved to this moderate learning disability
school. And then in the primary department, it
was fine because he was in one base. And he seemed
to cope fine with the same teacher. I thought,
oh, he's getting on OK. And then it came to...
secondary school and this is when everything
really sort of fell apart really so in year seven
it was when it was also covid so it was all very
disrupted in that in that secondary school department
it was run more like a mainstream so he would
go to different lessons with different teachers
that was all that was just too much for him basically
the secondary school couldn't meet his needs
um and it just went sort of downhill from there
so basically he hasn't done Full -time school
since primary because we had COVID for seven
and eight. Year nine was when he had the eye
condition, had to have an operation. He has a
condition called keratoconus, so that's constantly
monitoring. And then, yeah, so then it got to
year 10. 2022, he hasn't been in education at
all. We had his annual review and school said
that they couldn't meet his needs. Prior to that,
he was struggling to go in. I was getting called
all the time. And he was just hitting out. And
he doesn't ever hit out or lash out. So he's
not a ride. He's a gentle giant, basically. He's
a gentle giant, basically. So I said something
is seriously wrong if he's hitting out. There's
something going on. His needs are not being met.
So I said, that's fine. Can't meet his needs.
What do we do now? We're going to have to find
him something like an alternative provision.
And then that's when the LA. Yeah, that's when
LA didn't, well, basically they didn't really
do anything. They didn't do what they were supposed
to do. So he was left for a couple of years without
anything. I had to do complaint after complaint.
Yeah, it was really, really stressful. And all
this time, he's obviously just getting more and
more attached to me and not wanting to do anything
with anybody else. And then they sort of kept
him on roll there, but I kept saying, please,
can we take him off roll so that we can... find
him something that can meet his needs that they
would just send around a TA from the school and
said like obviously that was that was fine but
I said no this isn't an education he needs to
be taken off role and find something what's going
to meet his needs and that was when I was pushing
for an EOTAS package for him so something bespoke
for his needs rather than a setting because it
was obviously clear that a setting wasn't going
to be the right thing and then it's obviously
the trauma and everything that's come from that
time when he was not having these needs met and
that's really affected him a lot so yeah he had
a whole two years out of school and then he got
to 16 and then the LA finally agreed to issue
and a package like a bespoke package so for those
that don't know we've got for those that don't
know on the previous podcast of this we actually
spoke a lot about EOTAS it's about being educated
off or an alternative yeah it's a way of meeting
the ehc outside of education isn't it just for
those that don't know yeah it was agreed then
eventually but it really should have been agreed
way before because we've had two years of nothing
that should have been agreed way before then
because i i think he would have been a better
place now than what he is in and the funding
and he wasn't which feels so unfair yeah He was
at the school. He was on roll at the school,
but he hadn't been in there for two years. And
the other thing what the local authority did
was they kept his draft, his EHCP in draft. And
I kept asking for it to be finalised so then
I could appeal, but they didn't do it. So they
took away my right of appeal. They wouldn't finalise
his plan. So they basically broke quite a lot
of regulations and things. So I got to 16 and
then he had an alternative. provision which was
three times he got nine hours a week so he goes
out three times a week with support workers and
it's all very centered around him so what he
likes to do so he'll go out three times a week
and like swim in to a sensory room just go for
a drive and there's like a giant elephant near
us that he goes he sees and strokes so he does
things like that but it took he's been yeah he's
been with them for two years nearly now and it
took a whole year just for him to get in their
car So because he'd been out of school for so
long, he didn't trust anybody. He only wanted
to be with me and I would have to drive to the
place, go with him and the workers would meet
me there, then go out for 10 minutes. And then
it just took all that time and they would just
come in the house and it would just be a hello,
bye. It just took so long. And even now he's
going out with them, but it's still for very
short periods and he wants to come home again.
But looking back to him not going out with anyone,
he does now. go out but this took a long time
to get in there and that's where we then come
to the adult 18 what happens to that package
what are the rules around that when does the
ehcp finish change what what are you looking
at now that he's an adult so the alternative
provision he's with now they they're not a long
-term thing they're more of a transitional service
so their aim was to transition key and into adult
care services so we're now coming to the end
of that now at the end of the year so i've now
got to find something to replace that and then
there's also as part of his package he had ot
therapy but we have to go out of county for that
which is quite a long way um and then he had
animal therapy but that's also stopped now but
it feels like we will start with adult social
care it feels like we're starting all over again
so yeah that's not yeah and then you said you've
got do you literally mean you you've got to find
that well it's been the moving over to adult
care services has been quite like not as supportive
as i thought it would be it's been i think it's
different in certain areas but they'll give you
providers but i guess it's more finding if you
want to have find your own kind of carer or pas
or you could use ones from an agency or so that's
me sort of deciding what i want to do kind of
like a business I've worked as a PA before for
primary aid and it was very much on the parents
to employ pay invoice sort out receipts even
though they aren't funded but the parents are
having to kind of run it a little bit like a
business is that kind of yeah so yeah so as part
of Kian's package I do have so I employ my own
PA twice a week so that i can go to work on a
monday and a friday and that is through so it
was the children's social once we finally got
a children's social worker that was provided
through what's called a direct payment so and
then there's a company that we use which help
you with all of that side of the stuff so like
they'd sort out they sort out like employing
doing dds checks and then you just have to do
a time sheet but you are basically registered
as an employer So there's all of that. But you're
not having more access to you otherwise, isn't
it? And then you said it's children's services.
How long does children's services would have
Kian for? What age would that have to be? So
Kian got them around, I think it was about 16.
It took a long time to battle to get a social
worker. And then that's now ended. When he's
18, that will end. It's literally that stops.
And then they're like, you're with the adult
social care now. and it's just oh okay so it's
basically she's gone it's like bye and then you're
now navigating a whole new system from scratch
you automatically find a social worker in adult
services so the children's social worker will
put in a referral to adult social care and then
you wait for that to be accepted and then this
is when it goes on to process of what happens
when you move over to adult social care so if
you've got a children's social worker already
they will do the referral for you if you haven't
then you would need to go to your local furry
and say that you need a adult like social care
care needs assessment um but there are some people
who you're on the cusp of needing it at 14 say
there are benefits starting that process then
so that you're at least yeah known to care I
suppose would would you say that that's a good
yeah I think yeah I think yeah kids can miss
so much school and we've basically missed all
of the transition like meetings workshops so
I would like just recommend to anyone yeah so
I would just recommend from 14 just talking to
your child's like education provider and seeing
what is what they do for to start the transition
into adult because that's when you should start
talking talking about it but yeah going into
when you get your adult get accepted into adult
social care you have to have like a care it's
called a care needs assessment so you'll meet
and that's when you'll talk about like fakir
and he doesn't have the capacity to be able to
come and like some might be you know some young
adults might be able to say what they want to
do or what they feel they would like but obviously
for Kian it's obviously down onto us as his parents
to think what we think is best for him so you
just have a meeting and you speak about all of
his needs like his past and his traumas and everything
and for Kian like I would hope my dream to him
would have been to go to like maybe a day service
a few times a week but because he's been out
of school for so long he That wouldn't be possible
for him at the moment. So we're looking for him
to hire him like a PA or like a team of carers
to carry on from what his education provider
are doing now, take them out in the community.
And we're hoping to find someone that can take
over from that. And that will either be me looking
to find and employ someone myself. But you can
have agencies that help you with that or find
an actual care provider who can have a team of
people that. you would have okay but there's
also other options like you could if he was able
i would love him to go to like and there's work
placements that we have sort of like cafes and
gardening places that these young people can
go and work out which i think is lovely they're
working and learning and that's so nice or you
might think about if you want your Do they want
to go into supported living? Like you've got
that option. There's life skills centres we have
near us as well. But unfortunately for Kian,
he isn't in that sort of space to be able to
do that. Because I think that's when you look
back at the impact that of him missing all that
time has had on him. He's lost so many opportunities
and social opportunities that he doesn't have
the capacity to be able to go to a... day centre
and he wouldn't be happy either so I just you
know I want him to be happy and I think if that's
not what he wants to do and I know he's going
to be unhappy we'll think of other options so
I'm hoping to find someone more confusion and
and could send him back even further yeah it's
the wrong thing I suppose I can imagine you're
very aware of that yeah I just think like I want
him to be happy and feel safe and do the things
he loves. And if that's with someone, like finding
a carer or a PA to carry on doing that with him.
You know, I can look after him at home or take
him out. Yeah, I just want him to be happy. And
it's just trying to find that right person. Yeah,
exactly. You've got a person that can persist
and build to him. Is that the dream of him finding,
like having a really good relationship with the
carer and can build his confidence to go out?
What if you... could look in the future and have
him a dream scenario, what would that look like
for you? A dream scenario? I would love for him
to be able to... I would love him to be able
to go out and socialise more and access something
like a day centre, which I mentioned. Or just,
yeah, just have that and have a friend. He's
obviously not... I know it sounds really sad,
but he probably doesn't care because he loves
being on his own and he loves his own company.
But I always think my dream would be for him
to have a friend. So I'm hoping he's going to
find that person. That's my dream. He's going
to find a person in life eventually who's going
to be a friend to him. And yeah, I really, that
would be my dream for him. And really care for
each other in that mutual friendship way. And
get someone that just sort of clicks with him,
understands him. And again, like find carers
that are going to like love him. And care of
him like, obviously not the same as I, because
nobody ever would, but just love him and see
him because he's such a character. Everybody
that meets him, they all do fall in love with
him. And I just want them to, yeah, build that
bond and him to feel happy and safe to go out
and maybe eventually start exploring things like
a day centre with the safety of someone that
he trusts. Because that's all what it's about,
isn't it? Building up that trust. And I can see
that with his workers now. They've got such a
lovely bond. That's because I know they really
took that time to get to know him. And they just
really get him. And I just think they're really
special. It's such a shame they've got to go.
But yeah, I'm hoping. I'm still looking. But
I'm hoping we'll find some people to take over
and they're going to be just as good. Definitely.
At least you know it's possible because he has
had those good experiences over the last years.
Yeah, because I remember saying he's never ever
going to go out in the car with anybody other
than me. Like I was saying to my partner, he's
never going to go. And then that day, it might
be the smallest thing to somebody. But when I
saw him driving off in the car, I just was like,
like in tears thinking, gosh, he's going out
without me. Like it's such a big thing for. being
at home with me all that time and I'm like his
safe person and I remember saying to him why
don't you want to go with these like the people
that he goes with and he said I think it was
something like they don't miss they won't listen
to me like you do or something like that so I
thought he obviously knows that I know everything
like he knows that anything I think that's to
happen I can help him straight away yeah because
you absolutely are the expert there's no doubt
about that knew so incredibly well and and he
knows that as well and and it takes time for
other people to come in and and learn him you
know yeah and all of his how he can what he really
means by things all of those yeah definitely
definitely if that's a dream what are your fears
as kian moves into adulthood I think the fears
are not knowing, for example, where he's going
to live, who's going to look after him. Because
obviously, I would think, oh, he's going to live
with me forever. That's why years ago, I'd think,
he's going to live with me forever. No one else
is ever going to look after him. No one's going
to look after him. But I thought, in reality,
that can't happen because I'm obviously going
to get older. I can't look after him forever.
So obviously, that's a fear of who's going to
look after him. not here anymore so you want
and it's thinking like because no one's obviously
going to do that the same as i would do and i
know people listening to this now if you've got
a child with quite high care needs who needs
sort of 24 7 support that is the worry that i'm
sure they can relate to of that feeling that
never really goes away of who's going to look
after them when you're you know you're not here
And then that's what started me thinking, like,
I want to be, even though it's scary, I want
to be part of his transition to wherever he is.
I'm not sure what that's going to look like yet.
I think, like, ideally he would need a space
of his own because he doesn't cope being around
others. They sort of trigger him, like he finds
it really difficult being around others with
similar. sort of difficulties to him like stimming
or if they harm or he'll just does he just can't
cope with it so I think he would need his own
space with carers but that just makes me think
like I want to be like young enough to be part
of that to make sure he's okay and help him I'd
hate to be in a position where like you know
you get older like I don't know so I'm in my
60s and then You know, you're in an emergency
situation where he has to go somewhere and think
how scary that would be. But thinking about that
now is also really scary. So I think they're
my fears of what's going to, where is he going
to live? You know, what's going to happen? What's
his situation going to be like? Especially knowing
how attached he is to me and home. So that is
a fear I think about a lot. I don't think many
parents will be able to relate to that. That
fear that I listen to, it does make so much sense
because they rely on you so much. I suppose if
that's your fear and that's what you're wanting
for him, looking to now in the small steps that
it takes to get big dream and wish for him, by
looking for a PA and by him being out in the
car, that is already working towards. that yeah
the reality isn't it no small steps i guess that's
what you have to because it's not going to be
a one day he's with you one day he's living on
his own with caring take you you are already
taking the steps for him building his confidence
to be people and that is that is just massive
it's so huge that he's doing that yeah because
i think back to where we were him not leaving
the house at all only with me or his dad to go
out with people that isn't me it's like really
huge in itself and I often say to them look how
far we've come like I was always having to go
with him and now I just like say bye and he just
like goes even though it's not for that long
he's still doing it and then we can with the
new people we can obviously expand on that and
he might tolerate people looking after him in
the house and then again that's another thing
of him accepting that someone else can look after
him not me in our home so I can maybe have a
little bit of time to myself, which would be
nice. Yeah, for yourself and for yourself and
everybody else that relies on you, I'm sure.
Yeah, yeah, definitely. But yeah, so you have
to look at these little small steps, but they
are going to, you know, like you say, be a girlie.
Those future thoughts for Kian as well, right?
So often, regardless of her needs, so often the
most able sibling, no matter what their needs
are, also become responsible. or their sibling
is is that something you've thought about as
well yeah definitely I think like I know that's
my hope for my future that she has Kian has got
grace and I hope that you know she's always going
to look out for him and be there for him and
she often says to me like when I move out I'm
going to have to have an extra room for Kian
and I'm just like oh and I try and explain like
you wouldn't be responsible for looking after
him like you're going to have your own life but
then that gave me reassurance that she she's
going to look out for him as well and she'd never
say like karen and um yeah so i do hope that
she would then i do hope that yeah yeah yeah
because there's lots of things to look into yeah
there's lots of things to look into that i haven't
even gone into but things like to set up to like
protect his future like trust funds and um things
like that so i think like she will probably be
part of that like helping him be like a trustee
so like you know any if it was to come into any
money it like protects his yeah just sort of
his care and his benefits and things there's
so much I've learned so much just trying like
talking to other parents really who are in this
situation or have been past it yeah I've learned
so much about things you need to put in place
and um is that for social media how are you finding
these communities of people for supporting people
and wanting to So there's some people that I
know from that used to go to key in school with
him. So I'm still in touch with a lady who's
got a slightly older child. One of my best friends
whose son is autistic are roughly the same age.
So we're sort of talking about this sort of stage
together. She's a little slightly bit behind
me. So I'm kind of helping her with the next
sort of thing that's going to happen. But I've
really found, so I don't know if you've heard
or anyone's heard of Mencap. So they provide
webinars. If you go onto their website, I've
watched them about three times, so I just keep
watching over again, thinking, oh, I need to
watch it again. But they do regular webinars
about wills and trusts. So if you've got children
or young adults, obviously with disability and
they haven't got understanding or have lack of
capacity, because part of this going into adulthood
services your... Like a child will have to have
a capacity assessment to see that understanding
and if they're obviously able to manage their
own personal budget or their care package. Or
if someone obviously like me, I'm Kian's appointee,
I will obviously manage his finances and things
at the moment. But then it can get complicated
later on down the line. I think like if when
you're looking for support and living and things
like that, if they lack capacity, that's where
deputieship has been mentioned. That then gives
you, and it does cost, but... That would give,
say, me the right to make all decisions over
his finances. So with the PIP, if they get PIP,
you're their appointee to manage that. But it
gets a bit more complicated with other things
where you may need deputieship. And there's also
a health deputieship as well. So then if you
get that, that gives you all rights over if,
I don't know, your young adult or child would
need to have an operation, say. you would have
the right to be able to say you know you want
them to or you don't whereas if you don't sometimes
they get complicated then you have to have a
i think it's in the best interest of with like
professionals and doctors and things so there's
lots of definitely lots of things to think about
but mencap has been really good they do lots
of webinars and then there's the carers academy
which is the she has an instagram page and she
has a book that's helped me so much as well and
contact which is a charity i've called them lots
of times And they've helped me sort out his benefits
and things because I wasn't sure if he could
apply for like universal credit or things like
that. So they've helped me with that and talked
about accessing his trust fund because I know
lots of parents have difficulties with that because
obviously he lacks capacity. So that makes it
really hard. So you can't just go and say, I'm
coming to claim my trust fund. So I have successfully
just claimed his trust fund, but that was quite
a challenge. But yeah, so we've got that. So
yeah, there's lots of things. around those sort
of charities and organizations that are really
helpful and talking to other parents I will leave
them down below I think that'll be incredibly
helpful to be able to have yeah yeah definitely
yeah and then just talking to other parents I
think it's been the most valuable thing and just
finding people that understand and And that's
the best support, I think, in therapy. If you
meet another parent who's in the same situation,
you can just chat and they just get it. And then
you come away thinking, like, you know, I'm not
so alone in this. And there is people that can
help. Because I did feel quite, I did feel very
overwhelmed to begin with. And then I've just
sort of tried to listen to my voice that I give
to people. Like, you can't do it all at once.
You have to just take it step by step. Because
I was like, I've got to do this. And I was just
getting so overwhelmed that I've got to set this
up. I've still got so much to do now, but I just
think just take one step at a time. That's all
you can really do to not sort of get too overwhelmed
with the thing that there is to think about.
Yeah. Yeah. And you to like all these charities
and amazing organisations that are there to support
you on the way. You don't have to do this alone
is the point. Yeah, definitely. yeah I think
you get so used to as parents especially being
let down by the education and social care system
as you have you get so used to not trusting the
organizations you know forget about a key and
not trusting them you've lost a lot of trust
in the systems as well you get used to having
to do everything by yourself but it doesn't have
to be that way there are organizations and charities
out there that will yeah will support you in
hard yeah I think that's what I have got like
because I'm so used to not all the time like
having a fight or a you know like just not that
support there so it is like thinking looking
for these yeah the support that you can access
and yeah definitely and it's also I think it's
hard to I feel like with Kieran approaching 18
I was like really emotional so I thought to myself
I'm happy but I was like sad it was like a very
I couldn't really explain the feeling that was
on the eve of his birthday and I was like thinking
I can't believe Like, as an adult, it was just,
I was just really emotional. And I was just looking
back at loads of photos. And then I have that
very split moment of thinking, oh, what would
he be doing? Like, you know, like, would he be
going out with his mates? I just had that thought
sometimes. I don't happen very often because
I think, like, you know, this is our life. This
is what, you know, I love Kieran and wouldn't
change him. But I do have that very split of,
like, I wonder if he'd be going on holiday with
his mates. And I have that little, like, any
last little... for a short while and then i think
that like our transitions and like our journey's
been different but like i just feel like i'm
like embrace what we have and just like him and
just love him and yeah you know it's just different
but do you have any advice parents with younger
send children that are fearful of what yeah i
think i would say like maybe it's hard not to
but try not to look too far ahead to the future
because you can then have all that worry and
then it takes your joy away from like what's
happening now and the things they're doing now
and you can just worry yourself so much and I've
always sort of said my motto is like I just take
each day at a time and if things go wrong one
day I'm always like oh tomorrow's a new day like
we say that a lot in our house but I just think
yeah and if you can I would say try to find other
parents that are in your similar situation like
in person or online there's so much online support
and loads of accounts that you know are open
to helping you know we're all like it's quite
a lovely community on i find on instagram that
are all willing to help and support each other
and just talking to someone i think can really
help for you to feel less alone and yeah that's
what i would yeah i think so yeah and that leads
me on your account if people are listening today
and want to follow your journey and how you're
navigating it and and yeah how you're navigating
having both children with quite diverse needs
and how you're navigating adult where can they
follow you in your journey so yeah i'm on instagram
and it's life with the latins but yeah I'm just
on Instagram I'm not on any others at the moment
but yeah I try to keep up to date as much as
I can and particularly with this journey with
Kian because I found that there isn't that much
support out and you do feel like you're starting
off I kind of felt like I've started from the
beginning again from like when you first got
your diagnosis I feel like it's like I'm having
to start and navigate everything all over again
and there's not that much advice around so I'm
hoping that trying to share this journey with
kian and moving into adulthood i'll help other
people to feel less alone like maybe i felt sort
of a few months ago so yeah that's where you
can find out if you want more and thank you so
much for coming on to this because i know that
it will help those in your position feel less
alone and those that have the same fears as you
had to feel more reassured so thank you lisa
oh thank you thank you for Have a May.