Hi, my name is Jordan. I am a special education
teacher from the UK. I share my passion for everything
communication, sensory regulation and fun lesson
ideas for my classroom of disabled pupils aged
4 to 11. Each week I am joined by experts in
the field answering your questions and sharing
our knowledge and experience working alongside
our beautiful young people. Let's get started.
Hello everybody and welcome to the Sensory Classroom
podcast. My name's Jordan. Today I am joined
by a special guest, Josie, who is a sibling of
somebody with special educational needs. And
I thought it was really important to talk about...
siblings today because it is a very important
role and one that you don't choose to do, one
that is chosen for you and yet there are so many
fantastic siblings out there who care and adore
their siblings so much and actually are an incredible
support network for them. Welcome Josie to the
podcast. Thank you, thanks for having me. So
first of all let's talk about your family. What
does your family dynamic look like so we can
imagine where you come from and what brings you
to this space? Yeah, no, of course. Obviously,
I'm Josie. I'm the oldest sibling. I have a younger
sister called Rosie and she's 19. I would say
she's my little sister, but she's not very little
anymore. And we're actually currently transitioning
to adult services and kind of all that stuff.
Rosie is classed as a child with PMLD. And so
she has quite profound needs and requires care
from an adult at all times throughout the day,
be that me and my mum at home or her teachers
at school, her TAs. support workers, whatever
that kind of looks like for us. So Rosie was
born when I was three, so there's only a three
-year age gap between us. So it's pretty much
all I've ever known. I don't have any other siblings,
so I don't know what life is like with a normal,
typical or a normal sibling, so to speak. And
yeah, this is pretty much how we've always grown
up. So she is full -time in a wheelchair. Our
whole house is adapted. We have a lift in the
house, which is always something that people
find a bit crazy. She's hoisted full -time. She's
spoon -fed. All of that is done by either me
or my mum. And then my dad does help as well,
but he lives away. So that's quite nice that
she gets the option to go to either or house.
But yeah, our life has been very different, obviously,
because my sister cannot access things typically.
That doesn't stop us as a family, though. We're
very much, she will do it if we can find a way.
But obviously, as she's got bigger, that is harder.
But then I've got bigger, so I've been able to
help a bit more. But it has very much kind of
shaped my life. as an adult growing up as well
and my whole kind of journey professionally has
now been because of my sister yeah so let's talk
about that let's talk about what you do professionally
and then maybe we'll go back to think about being
a child sibling of somebody with PMRD so what
do you do now what what what has all your life
experience led you to become So my biggest kind
of achievement now, which is all due to my sister,
is in January of last year, I set up a children's
charity. So we're based in Coventry in the Midlands
and the children's charity is called Ladybug
Lodge. My little sister, well, Rosie has a, I
shouldn't call her little because she's really
not. Rosie had a VTech Ladybug toy that she got
for her third birthday and she still has it now.
We have about 40 in the loft that my partner
has to repair because she keeps breaking them.
And yeah, Lady McGlodge was basically named after
her toy and our experiences as a family growing
up. Not always accessing activities that we could
do together, or maybe we were accessing things
that didn't really work for Rosie, but worked
for me, or they really worked for her. But then
I was kind of just sat watching. And obviously,
as I got bigger, I didn't want to go to soft
play, maybe, or I didn't want to do those things.
But she still really does. So yeah, in January
of last year, I got together with some incredible
parents. friends ex -professional friends whatever
that kind of is to set this charity up with the
main aim that the whole family is at the session
no matter what is going on it's not just the
send child and their parent or them and their
PA actually the whole family can come and do
activities together so that's kind of snowballed
in the past year and a half and we provide a
heck of a lot of activities for families with
children and young people up to 25 of special
educational needs we've got term time groups
after school weekend sessions our holiday provision
is crazy but we're already supporting nearly
400 families which is just incredible but a lot
of that is families coming with their siblings
who get to join in not necessarily all the time
with the thing their send sibling is doing but
they get to be in an environment where other
siblings completely understand or us as staff
and volunteers understand because maybe that
was us 10 years ago or we've known that journey
and for families as well for parents they're
not having to go where's where's he going to
go today is he going to go to club do I have
to pay for him to go to tennis club will I take
my son child to a messy play session or where
do I put everyone do I have to arrange a sleepover
because I can't get them both there it's not
suitable actually no now they can all come to
the same thing and not be trying to juggle all
those things at the same time um which was obviously
really important from my point of view because
i would have loved something like that when i
was younger just to be able to all go to the
same thing yeah so what is the reality then without
a charity like yours without that data to activities
that are suitable for all can you remember any
specifics or of events where you felt either
that rosie it wasn't suitable she was just put
on her brakes nothing was me and her needs and
you know she was passive and not getting anything
out of it or that she was having a great time
and you were bored and under stimulated as well
yeah so my sister loves bowling like things like
that she's successful in her wheelchair and that
was never something I was interested in so her
birthday party would always associate around
oh we're going bowling because her and her friends
could do that and that was something I'd never
pick and even though lots of families would enjoy
that It just wasn't my preference. But then I
used to swim when I was younger. I did swimming
galas at school. And a lot of the time she couldn't
get into the pool or even get into the facility
itself because it wasn't accessible. And just
little things like if I had a gymnastics competition
or I was playing netball or whatever that was.
She couldn't even get there. It wasn't even she
can't join in because that was pretty much given.
But she often couldn't actually get in the front
door, which was really hard, obviously, because
then she couldn't even watch if she wanted to.
And even now, some of those facilities don't
exist. But it was difficult in that sense that
we couldn't even have that family time where
I enjoyed that she could come along. But then
the thing that she did enjoy, yes, I could go.
Like she loves messy play. Now, I love mostly
playing. It's great. I think it's amazing. But
when I was probably 12 or 13, I probably thought,
oh, that's a bit weird. And she would love doing
that or she'd love going to a music session where
I might feel a bit uncomfortable because it's
a bit more public and group involvement. But
that was the only thing she could go to. We didn't
have a choice in that sense. So she loved that.
But I was often sitting there going, oh, this
is a bit much for me. This is not my personal
kind of Saturday activity choice. But obviously
she'd really enjoyed that. So it was very much
a big toss up. what can we do to suit both of
us but it didn't often usually work that there
was one that did suit us both at the same time
yeah and then like you said even if it's one
of your choice well it would be nice if the other
one could at least be in the building yeah to
at least enjoy observing the other person you
know doing what they're doing like netball or
whatever that makes so much sense and it's very
much still ongoing as you say physically accessible,
having accessible toilets, having ramps. Yeah,
definitely. All of those things are still very
much in progress. Is that something really important
when you were choosing a location for your setting?
Yeah, I think for us especially, I've obviously
before Ladybug Lodge, I've worked as a teacher
in an autism provision base. I've worked in special
needs schools and obviously the range of need
is so high, but it always comes down to there's...
autism sessions or there's sensory processing
sessions and there's quiet sessions but even
still she still couldn't get in and I always
remember specifically we went to a local trampoline
park and they were advertising there's a scent
session there's a scent session I was like great
because she loves rebound at school we have a
trampoline in the garden we can make it work
between us like if we take enough people we can
lift her up out of her chair and onto a trampoline
and she'll love that And we turned up and they
were like, OK, like you're here for the session.
We were like, yeah, like let's sign in, whatever,
did all the waivers, walked through the door.
And the only way to get to the trampoline was
up steps. And I said, well, she can't actually
get in. And they went, oh, well, you have to
carry her up. I said, but you wouldn't say that
to someone else. You wouldn't say that to a child
who was walking. And yeah, you just wouldn't
say that. So things like that were really important
that actually if a child's coming in a wheelchair,
be that powered, a small one, self -propelling,
whatever they're doing. that they could get in
the venue initially, but then even still once
they're in, that the point of access wasn't just
that they can get in the venue. The doors need
to be double doors. They need to be automatic.
There needs to be buttons. There needs to be
a change in places, mobile hoists, ceiling hoists,
whatever that kind of setup is. There needs to
be an option. And yes, even now, we don't have
a ceiling hoist in half the rooms because we
hire a local SEND primary school. And obviously
they are not as adapted as... They possibly can
be because they're suiting a massive range of
needs. But if a child wants to get out in soft
play, we have a mobile hoist that we can take
to soft play. And in an ideal world, we'd just
have ceiling tracking everywhere. But obviously
we can't do that unless we had our own venue.
But at the same point, they can still get out
in a mobile hoist. I can take it outside. We
can take it into the hall. We can take it wherever
we need to. But if they need to change in places,
we've got the bed with sides. It's comfy. It's
not just a massage bed that's been put in the
cupboard and gone, oh, that's suitable for you
to get changed on. It's private. It's bespoke.
We've got all them things. And that for me, especially
because my sister, I always say she can't get
in and access it to the way we'd want to go somewhere
and access it. Then there's no point doing it
because there's going to be children with needs
just as high as hers, but also children that
need even greater need. And if we can't even
meet at that level. it's not it's not inclusive
basic needs of toilet access you know then you
can't call yourself a send session can you and
i can see totally see where that frustration
comes from years of attending these oh finally
there's a session that we can both enjoy and
then you can't even get through the door yeah
It's false advertising, isn't it? Yeah, exactly.
I know they call it greenwashing when it's about
eco stuff. Maybe it's the same disability washing,
you know? Yeah. They're just ticking a box to
say they're doing a SEND session and actually
there is so much more to meeting. that if you
actually cared about the disabled community that
you would make fully accessible sessions and
also can we just say not on a random time on
a saturday that no one else wants anyway i was
gonna say this about the trampoline session so
yeah the trampoline center and i'm sure families
who listen to this who are local first will know
exactly what i'm talking about their center is
on sunday at four till six my sister's like on
wind down time she loves to see bb's bedtime
story every night she's ready to watch that she's
not ready for a day like an hour trip out to
trampolining yeah like even me as an adult I'd
be like oh that's a bit much for me on a Sunday
especially if she has school the next day like
that's totally inappropriate isn't it it's just
it's not appropriate at all and the amount of
sessions we've been to where it's on like a Wednesday
night at eight o 'clock at night and it's like
well no she wants to go to bed like if you actually
saw how much she's done today when it's physio
swimming she's done all these things She's exhausted
come four o 'clock, let alone then finding the
energy to come out again. But also then on us
as a family to extend our day even more so, because
I think they often forget that actually parents
and siblings who are supporting with the care,
when they go to bed, that is usually your time
off and that's your bit of respite. But if we're
then dragging the day even longer, as much of
that experience is nice. We've then not had that
decompressing time or maybe we're preparing medication
or doing food prep or something in that time.
We've had to shovel that back and then maybe
we're not going to bed for two hours later because
we've wanted to do something nice and then probably
had an issue anyway. Or she's then tired because
of it. So it's kind of, yeah, but that still
happens everywhere. Every session we see, the
times are just so inaccessible. If you could
use this platform, imagine you're in a room and
all of these big businesses are listening. From
a sibling's point of view, what would you say
to them? To help them understand the importance
of having accessible, realistically timed, fully
accessible sessions for you as a sibling and
you as a family and for your sister. Yeah, I
think they need to look at it in a sense that
her needs are not separate from our needs and
that it should suit us, not her. And that isn't
a way of saying, OK, well, she can come at this
time. but you get to tag along as well. Actually,
no, we want to come on our schedule, which is
on a Saturday afternoon or on a Saturday morning,
or we've just been out for lunch on a Sunday
afternoon and we want to go and do something
afterwards. We're not the second thought. We
shouldn't be the afterthought to your normal
session, which I think is what they often see
it as. There's, oh, we can't make as much money
on this session. Yeah, but you could if you actually
put it at the right time. And they often don't
see that point of view. But I always say you
have to have lived experience and businesses
should be consulting local schools, local parents,
care forums, whatever that looks like to say,
actually, what does work? Because they're just
doing it as a we've made it inclusive, but not
accessible. So you're completely missing the
point. But yeah, I think they need. massive massive
input from families siblings even the young people
themselves because I know so many young people
who could say I don't want to do that at eight
o 'clock at night I want my bedtime routine I
want whatever that is and that they need to move
that to the daytime and ultimately try it if
it doesn't work fair enough that's completely
fine because not everyone wants to do those things
but arguing that oh it's not gonna sell it's
not gonna make us as much money well how do you
know you don't know until you try And we always
say that at Ladybug Lodge, we don't know if something's
going to work until we try. And that has been
things that haven't worked or families haven't
enjoyed. But if we didn't do that, we wouldn't
get the feedback. Whereas all these companies
get now is negative press because families aren't
happy with it, but then they don't do anything
about it. So yeah, it's an interesting one. They
need to really kind of see it as a, if this was
a normal family, for example, what would they
do? They'd come at two o 'clock on a Saturday,
eight o 'clock. Looking back to when you were
a child and a young teen, if you had really great
and broad access to those activities that you
could enjoy with your sister at a suitable time
that were totally fun for both of you, just like
you offered yours, if you had a really broad
section, if that was available to you when you
were younger, what difference and impact would
that have had on you as a sibling? and for your
sister and maybe your parents as well yeah well
I think it'd just be massive like we we offer
in the holidays especially um which is so loved
is swimming in a hydrotherapy pool um and it's
private session there's only six people in the
pool at a time the pool is heated which is such
a key thing for my sister that if we go to a
standard swimming pool it's too cold and she
wants to get out um and because of her needs
she can obviously do a bit of physio in the pool
and she needs hoisting in if we could have done
that every weekend since she was little, the
difference in her leg mobility, her arm ability,
all of that could be astronomical now, but we
will obviously never know, which I think is really
hard because she can swim nearly, which is incredible
for her. But if she had that regular input all
the time, we could go swimming all the time and
not be thinking about, oh, we're working, we're
not playing. Actually, she probably could play
and join in with some activities. games whereas
now because we haven't had that time we're so
quick to go let's do a bit of physio let's do
this and it takes the fun out of it whereas if
we'd been doing this forever now it would just
be fun which we're kind of getting to that point
now but when I was 12 I would have loved to have
got in the pool and been diving around and smashing
her and soaking her and not worrying that oh
she's going to swallow too much water or she's
not going to react in time or we're going to
need three people in the pool actually she would
have just been able to play and I think for me
when I was younger because I didn't have other
siblings I very much relied on friends to get
like fun moments with and yes we've had amazing
experiences and memories that I will never forget
but there's things that I'm going oh but I've
never done that with her and I've only done that
with my friends or she's never seen me do this
or we've never done that together and I think
that would have been the big difference but I
think especially for my mum Trying to split that
time was so hard because my sister's needs are
obviously so much greater than mine. But for
her to have maybe had some times where she can
just sit and watch us play and not be thinking,
I need to do this soon, or I've got to do this,
or I'm starting to think about this, or I've
got to drop Josie here soon because I need to
take Rosie to there. She wouldn't have had that
constant kind of monologue and blocking in her
mind that she has to do all these things. She
might have just been able to sit and go, this
is really nice. They're playing. i can do something
leisurely because i'm not thinking about it too
much um but yeah i we did have obviously amazing
experiences but even now i think it's only been
in the last four or five years that we've done
things that rosie's really loved like we went
kayaking for the first time she went rock climbing
and she loved that and we have traveled further
to do that But we would have done that every
single year if we knew it was an option. Whereas
it's only really started to come up now, which
I think is a shame because obviously as she's
got bigger, her needs have got bigger and things
are now less accessible because she's heavier
and we can't lift. Whereas when she was five
or six, we would have easily done these activities
quite often. Whereas now we have to be limited
because of her tiredness or our backs or whatever
that is or manual handling equipment. Whereas
if she could have done that when she was really
young. it could have been something that she's
done every single year every month or been an
activity that she actively chooses for actively
wants to do whereas now she hasn't really had
that and it's a bit more sporadic like oh we're
going to try this and so i think that would have
just been massive for us to have more of a range
of options for her as well but it wasn't just
we're going to do this each weekend it was actually
no yeah because you only had one option yeah
we yeah yeah a lot of the time it was this or
that whereas now we can say oh okay when we go
on holiday do you want to do activities on holiday
do you want to go kayaking yeah you do okay we
can do that whereas before there wasn't always
that option or readily known that there was that
option that wasn't just for her again it wasn't
a oh we'll send her away with carers or nurses
or whatever that is and she will do those fun
things but I will then be at home yeah you're
not getting that shared experience yeah it's
still not the same I think that's what this podcast
is really showing actually that it's not about
access for her necessarily of course that's important
it's not also about um great activities for you
and you know so that you can actually access
other things other than being a carer because
that's important as well and meeting other people
it's about that shared experience sometimes and
enjoying sibling just being siblings yeah what
was it like growing up with a disabled sister
different I think but then I also don't know
any different and um someone said to me the other
day if I change anything around my life what
would I change like I would never say I'd change
Rosie there are things I would love I'd love
for her to talk a bit more um I'd love for her
to walk like that would be amazing but then I
also think she would cause absolute havoc so
maybe it's not a good idea um but yeah it obviously
was different and there was yeah many memorable
moments like being called out of a GCSE exam
because she'd been rushed to hospital and just
things that no none of my friends experienced
that really but I think we were lucky in the
sense that my sister's primary school did a like
Saturday and summer play scheme when she was
really young so I was probably only 11 at the
time and siblings were welcome to go to that
and there was two other siblings who were the
same age as me and even though we didn't We weren't
necessarily best of friends or whatever, but
it was nice that when there was something going
wrong with our siblings, we had that little check
-in with each other because a lot of my friends
at school, if I was at hospital with my sister
in the evening, maybe I'd literally left school,
got the bus, got to the hospital, and I'd stay
there until nine o 'clock, get home, go to bed
and do the same again. That could have been two
weeks in a row if she was having surgery or she'd
been ill. All my friends... didn't understand
because they just don't and it's not that's not
their normal whereas for me that was my normal
and it was nice then to have those two siblings
that I know to just say oh we're back in hospital
again and they kind of understand the whole yeah
well do you need anything and it wasn't they
weren't saying that just to be polite they genuinely
would offer things that they knew we would need
and it would be things like oh could you bring
us some syringes we've left this at home we've
left this and they would completely understand
that whereas I don't feel like any of my friends
fully understand. I feel like even now, some
of my friends don't fully understand. And I mean,
all my friends love Rosie and those that have
met her are amazing with her. But it's just not
the same as your day -to -day, every day you
wake up, you watch her on the monitor at night,
like you hear a noise in the night and you don't
think someone's getting in. It's, oh, is she
okay? Has she caught her arm in the bed? Has
a pillow landed on her face? Like, what is it?
You're constantly in that kind of fight or flight
mode all the time, which no one... around me
at the time was experienced either so I think
that was obviously different but I don't I don't
know I'd never change anything I don't think
at all but yeah just more access experience just
more access just doing things together would
have been so much nicer I think because obviously
you're in that zone all the time of what do I
do what's going on things can be stressful you'd
hear horrible news from surgeons and you'd kind
of just go um and I think because of that I grew
up way too quickly and I was way too mature for
my age. Yeah, that's one thing I've noticed actually
with siblings. They adore their siblings. There's
no question. They're so protective. But there
is an aura of maturity around them and an aura
of worries that other children their age don't
have and responsibilities that other children
their age don't have. So I think it's wonderful
to hear that you had other children that you
can relate to. Yeah, which is lovely. at your
lodge that's also a huge benefit as well is that
siblings can connect in that way so there's that
understanding of that weight of that responsibility
and their love of their sibling you know maybe
other people don't understand what it's like
to love and care for and be responsible for somebody
at that age yeah and we found at Ladybug Lodge
Session especially so we do different sessions
depending on age and then we have a separate
session for children with PMLD just because we
can do so much more to cater for them and we
can get specialist equipment out and whatnot
and we had two families recently and one was
a little girl with quite profound needs and another
was an older boy with quite profound needs and
they both came with a sibling of the same age
and these two got on like an absolute house on
fire from the second they walked in and at one
point one of the mums called the boy back and
said oh I need you to get some syringes out the
car because I've left them in the car and I can't
leave her on her own and he was like oh I'll
be back in a minute I need to help my mum and
the other sibling she went well I'm going to
go and check in on my brother and they kind of
then met back in the middle and the boy went
oh I've got the syringe my mum like she's okay
and the sister went yeah my brother's fine we
can carry on playing now and then every 10 minutes
they were just going should we go and check they're
okay and In their mind, they were still, even
though they were playing and having a water fight
and decorating biscuits and doing all those fun
things away from their siblings, they still had
that monologue in the back of their mind going,
are they okay? Does my mum need a hand? Do they
need me to get anything? Has something happened
where I've not been here? Like, do I need to
go and help? But when one of them would say,
I need to go and help, they're like, okay, if
you need anything. And they were both only nine
and they already had that kind of, well, if you
need anything, I know I can probably help you
because I understand. Whereas there was definitely
children at my school when I was nine who wouldn't
have understood that at all and would have been
like, what do you mean you need to go and get
a syringe from your mum? What are you getting
that for? Like they just didn't have that kind
of contextual awareness. Whereas those two especially,
they understood each other's situation so much,
even though on paper their siblings are completely
different. But they knew the complexities of
if mum needs a hand. I'm the best person to help
her right now because we're not at home or dad's
not here so I can help or whatever that was they
were the second carer and they were both nine
which is crazy because no nine -year -old has
that pressure usually or that kind of intensity
but they both took it on the chin and completely
respected each other for doing it because they
both understood whereas if they were at a soft
play running around with other families those
families might have They're like, well, what
do you mean? I don't understand. And that's when
the questions come, which can then be quite hard
for siblings because you can explain it all you
want, but people still don't completely understand.
And so I think things like that are lovely because
they wouldn't have that understanding elsewhere
unless they access kind of young carer sessions
or whatever that is. But again, even that is
so few and far between. And you might not always
be with families who are caring for a sibling.
You might be with ones that care for a parent,
a grandparent, or maybe their siblings needs.
are completely different and actually you don't
understand that level of need but for those two
especially both having siblings with PMLD they
both just were like yeah okay that makes sense
I understand which is which is so nice for a
nine -year -old but for them to then just go
let's go back in the ball pit they can then kind
of forget again and then go back to it but they
both had that understanding each other so yeah
it was really nice It must have been really wonderful
for you to see that as well. And your inner child
must have just been singing with joy. Honestly,
it does. I think that's all I would have wanted.
Yeah. Especially in moments like that where maybe
something does go wrong or just to have that
person that goes, oh, it's okay. I'll be here
when you get back. But when you get back, they
don't bombard you with questions. What happened?
Are they okay? What's going on now? It was just,
okay, well, are they okay? Yeah, they are. Okay,
that's fine. Let's just carry on playing because
they know deep down you will. say more if you
feel you need to but as a sibling they also know
I don't actually need to know I just want to
give you that time so yeah it really does especially
me I think because of my sister it really does
make me feel yeah very warm inside when that
happens but yeah those are the families as well
the parents they appreciate that that actually
the children they're playing with their siblings
are playing with other siblings who completely
get it as well and they've been not got that
potential bias or judgment of oh why is your
sibling acting like that they're not bothered
at all so there's no kind of negative energy
at all in that space it's just completely this
is really nice they feel welcome here and safe
but they know they can come back to us there's
a lot of parents that listen to this podcast
that hold a lot of guilt over the amount of time
and energy that they need to spend with their
disabled child in comparison to their non -disabled
child what would you say to the parents that
are feeling that way? I think that is really
really hard because as a parent obviously you
want what's best for all your children but obviously
children with complex care needs whatever that
is you just can't do that you can't split yourself
in two and say you will have this part of me
forever and you will have this part of me and
I think my mum found that really hard because
I was late diagnosed with ADHD at 17 and I think
maybe if my sister didn't have the need she did.
they would have realised that a lot sooner. But
I also think every professional ever just went,
oh, she's a carer, it's fine. We'll just tarnish
her with that brush. And actually me having that
kind of discovery at 17 was massive. And I know
my mum felt guilt for that, but she couldn't
have done anything because if she didn't care
for my sister the way she has, she wouldn't be
the person she is or my sister wouldn't have
developed as well as she has. And yeah, I know
she probably does feel guilty, but I wouldn't
have wanted her to give me more if it was going
to give her less. And I think every sibling.
probably does have moments where they go oh I
wish my mum could help me right now or I really
can't do my homework but she's too busy showering
my sibling which is going to take two hours or
whatever that is and there are definitely times
where you will have that and it is hard but I
think as a sibling deep down you always know
they're not doing that because they love you
less or they haven't got time for you whatever
that is it is just a matter of they need me more
right now and that's fine because you will always
get the time back and I found as I've got older
if I had a teacher training day and my sister
didn't that is such like an us day and my mum
really does make that time we will do as much
as we can together and it is just finding those
kind of little pockets of time which I think
are so important it doesn't need to be every
day you feel you need to give that back that
time back to your neurotypical siblings whatever
that is it's just making them feel special in
certain moments is really important I think like
things like my mum showing up at school to an
awards night meant far more than her sitting
and doing the homework with me because I knew
she'd gone to the effort of getting someone to
look after my sister or making arrangements or
whatever that was she tried really hard so you
know in the back of your mind she's not just
gone yeah I'll come tonight that actually all
the planning and time she's put into that that
is the love they have for you it's not If they
can't show it all the time, it's the things they
do for you in different ways. Like my mum would
always leave me a note in my lunchbox throughout
the whole of primary school. And knowing that
she took that time in the morning just to try
and pick me up throughout the day, potentially,
when she knows that she might have been an optician's
appointment. She could have been anywhere at
that point in the day, but it was a little, I'm
still thinking about you, even though I'm probably
not with you right now because I'm looking after
your sister. It was little things like that that
kind of mean the most. and even now she'll do
little things like she'll send me a little text
like we're at the hospital with like a nice picture
of my sister whatever but it would always be
wish you were here we miss you today like i hope
this is going well and it's just those little
things that kind of tick you over and you don't
then need all that time but i know parents feel
guilt so many parents say it to us all the time
that they wish they could split themselves into
500 and make sure that their neurotypical child
had all that time dedicated to them but it's
just impossible i think i don't know if there's
any any fix anyway but I think my mum also made
it really important that I had of adults that
I had really good relationships with or that
I had friends that I had really good relationships
with so if something did go wrong with my sister
it was should we ring them do you want to go
to them and kind of having that choice of okay
this is going wrong we're going into hospital
the ambulance is here do you want to go and stay
with your dad do you want to go and stay with
your auntie do you want to do you want me to
phone a friend's mum where would you like to
go and kind of giving you that autonomy that
you don't need to be in this situation if it's
too much for you right now and I think that was
especially important for me during kind of my
GCSEs and my A -levels that actually you are
really important right now and if something is
going wrong or we need to make a plan or something
changes that doesn't make you less important
because the things you are doing are really key
so that was nice it was always kind of like a
bit of a backup plan of we can do this to make
sure you're still just as important and looked
after and whatever that is right now. even if
my attention is slightly moved away. But she
always made up for that time. And I think that's
the hard bit. Do you have time to make up for
that time? But there is always little ways, I
think. So it doesn't need to be equal time, does
it? No, not at all. Equital time, if that's a
word. It can be equal in energy rather than equal
in actual time, can't it? Or equal in thought.
like you said with your notes i mean that might
have taken a couple of seconds to write but that's
not the point yeah the point is that she's taking
the time and energy and thought and making it
really meaningful so it's a rich experience rather
than a lengthy experience what about for teachers
if they have in their class um a disabled child
in their class how could a teacher better support
them is there any ways so I think in primary
school it's quite hard because obviously you're
quite young and sometimes some parents obviously
don't tell families like their other children
everything but then some siblings by default
will know everything depending on how involved
they are with their care but I think just regular
kind of checking opportunities were always nice
for me and I always remember my year seven form
tutor every Friday he'd say how's your sister
been this week and then I'd kind of say oh she's
done this she's done that and then you go but
how have you been and he'd always make sure he
followed up with that question afterwards and
if I kind of said oh yeah like it's been a bit
of a busy week he'd be like well is there anything
I can do and even though there wasn't a lot of
the time knowing that every Friday he'd just
go oh how was how's your sister been how's how's
home this week like have you got everything done
anything going on and I think at like big times
when I don't know we were having the lift fitted
and the house was maybe we were getting a new
wheelchair and we didn't know if she's gonna
be comfortable all those things because you a
lot of the time at home have a lot of professionals
in your house have a lot of people changing things
that you don't have a lot of say in we don't
our family bathroom is for my sister i i can't
have a bath anymore because that is completely
changed for her it was nice in those times when
he would ask oh how's things been like oh well
we've lost the bath this week because we've now
had to have a wet room he'd kind of always try
and make a way to make that situation a bit better
like things like oh make sure you always book
a holiday with a bath and it was like as much
as he couldn't physically do anything about that
situation he always kind of turned it around
to make it like oh that's not the end of the
world though there is always another option and
which I think was really nice just to kind of
because I feel like as a sibling sometimes you
can have quite tunnel vision of oh that's just
been done for my sister I can't have that anymore
we've lost this we don't have this space in the
garden anymore because they've put her ramp in
whatever that is but it was nice for someone
to kind of find the light in that and go actually
no well if you don't have a trampoline at home
make sure you say in PE I really want to go on
the trampoline because you can't do that anymore
at home and just finding those ways but I think
as I got older and I had kind of like crucial
education moments at my GCSEs and A -levels especially
before my GCSEs because my sister had been quite
poorly at the time um I asked my year head to
sit down with me and make a plan because I said
if something goes wrong I want to know straight
away but I want I don't want it to impact my
performance either because I was very much I
want to get these grades I want to be able to
do the best I can but I was still worried at
the same time and it did happen in one of my
exams that she got rushed to the hospital and
we made a really good plan of please come in
ask the exam invigilator how far do you think
she's got left can you just subtly walk past
see what page she's on see what that is and if
you think she looks done or she's done that's
when one of us will come in and just say oh We
think we need you now. Can you pop out? So it
wasn't this major disruption, major panic. It
was actually handled in a really nice way that
I then also didn't feel like everyone was looking
at me and thinking, oh, there she goes again.
Like something's happened with my sister. Off
she goes. But they actually made that accommodation
on my terms, which made me feel so much more
comfortable. But even things like at secondary
school, especially, we weren't allowed phones
at all. It was a complete ban at my school, which
was completely fine. I was allowed my mum to
text me. So my mum was allowed to be not undue,
not disturbed. And if she texts, no matter what
classroom I was in, no matter where I was, I
was allowed to take my phone out and check it
just in case something had gone wrong. And it
happened once that I did have to take my phone
out in the corridor. And it was quite funny that
a teacher that I didn't know, put your phone
away. And one of my friends straight with him,
I'm like, no, something's wrong with her sister.
She's allowed to. And he immediately kind of
checked himself and was like, oh, I'm so sorry.
I didn't realise. And my school then worked really
hard to kind of. make sure that those who needed
that were kind of protected by any members of
staff who were walking around the school and
that it wasn't they weren't so quick to judge
they kind of gave you that time to actually go
oh no actually I'm trying and you don't want
to be fumbling around and looking silly but they
kind of didn't make you feel that in that situation
which was really nice but I do think for teachers
as well sometimes school is a happier place than
home because of everything that goes on so they
really need to make sure they're fostering that
environment no matter what it was I loved PE
and every PE teacher I ever had said do you want
to stay after school tonight and do this we've
got this on we've got this on just because those
extra 45 minutes of playing netball playing badminton
I didn't care what it was it was something fun
to do before potentially going home for three
hours and cooking dinner and feeding my sister
or changing her bed or doing all those things
it was that tiny bit of extra time just to be
me yeah and not be worrying about it yeah but
I think they often forget that you are still
a child and you are still you should still be
the way everyone else in your class is but a
lot of the time you've kind of got your adult
hat on which you've kind of been given way too
early or adopted way too early um and just giving
time for those opportunities that were so important
and there's lots of things I did with school
that I wouldn't have had the opportunity to do
with my sister because we maybe couldn't go on
a day out there or we couldn't go on a trip there
but actually when i was at school i could because
i didn't have to worry about my sister but it
was also a time for me just to have fun because
i wasn't having to think about it but obviously
it is hard because they yeah education is very
education heavy um i'm even working in schools
i know what that climate is like for teachers
and it's so difficult for them to juggle but
I do think it is quite noticeable who the young
carers are kind of in a class. But we even had
a young carer support worker come in once a month
and they'd just get us all together and be like,
do you guys know each other here? Like, did you
actually know? And that was nice then because
then if you saw each other on the playground,
you'd give each other that like, oh, hi, like,
I know you're in a similar situation to me kind
of nod, but you didn't have to say anything.
But then there were times that it was nice too.
So I think even that in itself, just talking
about what young carers do, bringing that awareness
into schools. um helps everyone not just the
teachers but the 200 other people in your year
group they're kind of going oh okay that makes
sense as to why she does that or why she sometimes
has to go home early because a lot of people
just didn't understand but if there was a bit
more school -wide education on it then maybe
pupils and the teachers and other support staff
are in school would go okay that makes a lot
of sense um but yeah i mean there's masses they
could do it's just it's very school specific
that's the problem It sounds amazing. And that's
such great advice. You're full of so much wisdom.
And I feel like lots of teachers and parents
are like, oh, listen to this. And I've taken
lots from it. What are your hopes for Ladybug
Lodge? You sound like you're doing so well already.
What's the dream? The dream is to have a lodge.
Definitely have a lodge. Yeah, it's all down
to, I blame it that we went on a trip with my,
so my sister has. a regenerative condition and
they do they've got a Facebook group and families
across the UK will meet up every now and then
and I think I was only probably 11 or 12 at the
time and we went to a place in Maidenstone called
Thames Valley Adventure Playground and we turned
up and I literally my jaw was on the floor and
I said to my mum why do we not have this here
why do we not have this at home why have we drove
two and a half hours to come here and we walked
in and everyone was literally the nicest person
I've ever met ever and my sister could go on
the swing on the roundabout they had a zip wire
they had a two -story wooden castle and she could
go up on the second story and I was literally
mind blown but then you went inside and there
was soft play and there was a hoist in there
and there was a sensory room and there was a
music room and there was all these things I was
literally going wow why why is there not send
community centers where they're like this and
why they're not something nearest like this why
have we driven so far And then as we learned
about there, we looked at other places and typically
they were always an hour, an hour and a half,
two hours, whatever. But over time, we've slowly
kind of gone to places and every single time
I just go, I just want to bring this back home.
I just want to pick the whole building up, crane
it to Coventry and drop it down and help all
the families that are in Coventry, Warwickshire,
whatever the surrounding area is. to have somewhere.
So yeah, our goal is to have a lodge 100 % with
a swimming pool that isn't just open at eight
o 'clock on a Sunday night to send children.
Have a soft play, have a sensory room, have all
those places that you can't just go to because
usually they're in a school and the school closes
and that's it. You can't access it in the holidays.
But having somewhere that is open just all the
time. So families who haven't got a preschool
place can come in the week and they can play
and they can meet. professionals and we always
say it's so important to get local professionals
in the local la and whatever that is the nursing
team portage whoever they are get them in but
in a setting that's not intrusive not feeling
like you've constantly got 100 professionals
in your house actually no come and meet there
that can be the place parents can have a nice
chat with a professional get some advice or fill
out a grant application form or whatever that
is borrow equipment meet other parents and then
not worrying can my child get out can they do
this can they climb that is that safe is it all
adapted actually are we going to turn up to somewhere
today where they can access everything just those
little things the basic needs really um of a
community centre is the absolute dream it sounds
like a wonderful dream and I totally believe
that you're gonna make it happen I totally do
if people are listening from the local Coventry
area how do they find you and and how do they
join yeah no of course so we're on instagram
facebook and linkedin always under kind of ladybug
lodge there might be scnd stuck on the end sometimes
if we didn't get the name in time and but then
our website is just www .ladybuglodge .co .uk
we have so many activities especially in the
holidays even if you don't live in Coventry or
Warwickshire we always say we'll take you as
far as you come we've got a very incredible boy
who comes down from Nottingham I think he's travelled
like over a thousand miles in total to come to
us in the half terms and yeah if you want to
come book on we always do a booking system because
yeah we hate when it's busy kids hate when it's
busy um but we do all sorts special special things
like Santa's Grotto come and meet Father Christmas
privately as a family and actually don't take
home a rubbish toy that your child's not gonna
be interested in take a selection of fidget toys
take something that is important to you um but
yeah please families get involved we always say
it's lovely for people to come for the first
time because they always look so nervous and
then Five weeks later, we've seen them 20 times
in that time because they... always say they
feel like home or they don't feel that they're
judged which i think is so important come coming
to lady because you shouldn't feel judged you
should never feel out of place it's just somewhere
that your child can be whoever they want to be
but also as a parent if you want to sit down
and have a cup of tea and actually not run around
in soft play because you want to keep an eye
on them it's fine to just sit there because all
the parents going oh yeah my son does that too
oh yeah i was awake at 4am too i'm shattered
i'd love a coffee it's nice in that sense that
it's not just for your son child it's not just
for you as a parent it's not just for your sibling
it is for all of you and everyone that works
there volunteers there whatever it is they all
get it be it lived experience professional experience
be it themselves or neurodiverse whatever that
is um but yeah anyone that's anywhere in the
uk come and get involved um but we're always
sharing other stuff as well that's happening
in Coventry Warwickshire there's lots of other
kind of hubs like this across the uk that we
always are talking about um so yeah even just
follow us for information really because we're
always sharing bits and bobs that's really important
but if you're not one of those and you're a business
or you're someone looking to be more inclusive
just have a look at what we do get in contact
with us there's loads of things that we can share
resources charities that we know that are kind
of paving the way to make things either fully
accessible for families with pmld or actually
include siblings and parents as well um so yeah
just for any reason really give us a follow i
guess absolutely reach out thank you so much
for joining me josie it's in such an important
conversation i'm sure teachers and parents and
siblings alike will get a lot out of this so
thank you so much for joining me i really appreciate
it