I would like to welcome everyone.
This is your journey.
I'm Jenna Messenger,
I'm specialist learning disability nurse in mental health in
our specialist learning disability service.
Today. I have Sharon, who's come to join us, who is a parent
of one of her children who joined us on the sibling group
that we run, ran from our service in CFHD.
And I just am really excited to hear from Sharon learn about
what she felt the sibling group did for her child,
what it's like as a parent,
and just be able, hopefully to share these experiences
and stories to help other parents and carers
and young people know that we do understand the impact
for siblings when you have a sister
or brother with a learning disability.
And hopefully be able to offer some hope
and thought for the future how we can support.
Sharon, welcome. Thank you so much
for joining me. I'm so grateful.
Could you share us? Oh, thanks for having me.
Thank you. Would you be able to just share
a little bit about your family, what you feel comfortable
and what led to the sibling group please of?
Um, your little one attending or not so little?
Yeah, yeah, of course. Um, so I have two children.
Uh, one of my children has a
severe epilepsy and a severe learning disability.
She has something called Lennox-Gastaut Syndrome.
So she has very frequent seizures
and um, she's 11 years old,
but cognitively roundabout 18 months.
Mm-hmm. She's hilarious. Great fun.
Um, everyone loves working with her.
Um, and yeah, we have a lot of fun with her,
but obviously that comes with challenges.
And my other daughter is now 14.
She was 13 at the time of the siblings group.
And she, yeah, I mean, she's amazing.
She's, she's a young carer.
Um, and yeah, she has had a lot to deal with since
she was four years old, when
that was when my other daughter had her first seizure.
So over the years, she's witnessed many, many seizures, lots
of difficult, challenging behavior.
Mm-hmm. And also, you know, we all have a lot
of fun together, but I think the pressure is there
as a sibling, uh, in a way that it's not for,
for other typical siblings.
So I think, think it's quite a unique situation.
Could I ask, when you said as a young carer,
what do you see as a young carer for your eldest child?
What does that look like?
I think it's interesting, isn't it?
'cause I think we often think carer
and we think just doing chores.
And, um, she does do that. She absolutely does.
She will help with seizures.
She helps cook her sister's special ketogenic meals
because she's on the ketogenic diet.
She is amazing at helping her when she decides to not move,
when we're out and sit down in the middle of the pavement,
my older daughter will be the one
that can somehow distract her outta that.
So all of those things of the doing.
But I think I've considered this before,
and I think sometimes being a young carer is about the
things that you don't get to do.
Wow. So, you know, we don't get to go out a meal, uh,
for a meal as a family.
Mm-hmm. We don't get to go to the cinema as a family.
We can't go abroad.
There's a lot of things that we don't do.
So I think being a young carer is a combination
of doing stuff and often stuff.
I mean, I've listed there some very practical things,
but often it's just being around all of the noise
and all of the chaos and still functioning.
You know, that there's, it, it's, it's a huge thing.
Um, you know, the fact that she can come home
and get her homework done in sometimes really difficult
circumstances is, is, is a real achievement.
Um, and I think lots of those things get lost.
Uh, and I think often the young person might not realize
that because she's not really known any different
and I don't think she knows sometimes how different,
perhaps her life, her life is.
Um, because she, she, I've asked her a few times
and she'll say, well, I, I just dunno any different.
But I think it's important for us as carers
and as professionals to be doing that, looking out for
and making sure that vision is put in place.
Do you think you've had that support for your,
um, daughter throughout the time?
As, like you said she was four years old when, um,
she saw her first seizure.
Did you feel there was that recognition at that time
of her in her own right as her sister
who was experiencing a different life than
what you put were envisioning?
Was there that conversation, like you said,
from professionals or did you find that came later?
Yeah, I, um, It,
It was considered in things like social care reviews
because that informs us having support so
that we can have respite as a family.
But in terms of direct support to my daughter, not really.
We were referred to young carers,
which is a fantastic organization.
Um, however, I think it,
it can be quite difficult
because this is actually a unique caring experience
because it's a sibling.
So there is a lot caught up with that.
And that's very different.
Um, and I don't think it's any harder
or any easier than having perhaps a parent
who needs support, but it is a different experience.
And so I think often, you know,
in young carers you are not necessarily among people
that get it quite in the same way.
And then of course within that there are young carers
or siblings that might have different types of disability.
So they might have a physical disability.
And that's really different to having a learning disability.
And that's different again, to having seizures.
So while we can't have loads
and loads of fragmented groups, I do think we need
to tune into the fact
that these experiences are very different
between, between siblings.
Um, so yeah, we, there's,
and so essentially no, there's not been any specialist
support siblings group.
And you were saying honoring those experiences.
And it's interesting when you did point out about honoring
what a young carers, but in the different roles that may be.
And actually it made me think of connection.
'cause like you said, the young carers,
you might have carers who are caring for a parent,
but that's different from a sibling and like you said,
and a learning disability or if they're having seizures.
So that honoring that experience
and connection in its own right.
Has your daughter been able to meet other young people
before she came to the sibling group in other
peers who have, um, a sibling with epilepsy
or learning disparity or has, was that the first time
or has she had that experience
with other young carers in her own right, in her experience?
So the school did do one young carers meeting,
but again, I don't know how, I think actually I,
I believe she did meet one person in that that had a sibling
that sounded similar to her sibling.
And she was, she focused on that.
Um, but other than that, no.
And this was the very first time that she was among people
that, um, had siblings with learning disabilities.
Mm-hmm.
What difference do you think it made
by her having the opportunity to have peers who had
experience or living with the experience of having a sister
or brother with a learning disability, do you think?
So it's interesting, this one,
I can only really imagine it
because like a lot of teenagers, she's not
that forthcoming with information.
Yes. Um, and what I did know
and what I saw was that every single week that this ran,
she was really keen to go.
And that's quite, you know, I, that was enough for me
to know she was getting a lot from it
because she just would say, oh, there was no feet dragging.
She was keen and happy to go.
So I think she got a lot from it.
Um, I guess relating it to my own lived experience,
I can only relate it to the feeling
that I have when I meet other people that I deem to be
similar to me, to have children similar to me.
Um, and again, that that is different
because, um, again,
lumping together all disabled children often isn't very
helpful because there will be people that might be dealing
with the challenges of a child on a ventilator
or tube feeding people that might be dealing with challenges
of neurodivergence
And people that it, well, when for example, um, children
with a very severe seizure condition,
it feels like a breath of fresh air.
'cause you think, oh, these are people that truly get it.
And I think we are not brilliant, um,
in society at actually
teasing out those different types of disabilities
and different types of conditions.
And sometimes it's like, oh,
here's a parent carer support group.
And you go along and you just think, oh,
but this is so different because, you know, their children
are different to my child
and we don't have the same challenges.
And just because our child's children are considered
disabled, it doesn't mean that they're,
we are gonna be sharing the challenges.
So I think when you actually,
In this case look at siblings of children
with a learning disability, that's a really unique thing.
Um, and I think that's really powerful.
And I know that I believe conversations were had about
perhaps the frustrations of being in, in the town
and the child will, you know,
and their sibling might, um, struggle
or those kind of things are unique to that,
that particular profile of disability, I suppose.
So yeah, I think actually recognizing these
differences is really important.
And I think sometimes with services
or um, policies, we can just think, oh,
disabled children and just one big group.
And actually, uh, yeah, that in itself is, is really,
it can be very unhelpful.
So I think, yeah, it's finding people
that are really in that similar situation.
So I can imagine that that felt like hopefully a breath
of fresh air for her because it's not something she would've
had the opportunity to do before.
And I was thinking when you talked of the seizures,
there's gonna be other parents
and carers who have their child who have seizures.
And I was thinking at four years old and seeing that,
and I don't want to re-trigger too much,
but just wonder, Sharon, have you got any, you look back
and think of any advice of any parents
or carers going through that who has a daughter
or son who may witness that what you think can help?
'cause that must be really scary
and you are having to focus to keep one child alive.
But you are also so thoughtful of your other daughter
and son and what they're seeing.
And do you think there's things you think, oh,
I wish professionals could have considered or helped
or we learn this or this.
What, is there anything you could share share
that might help us their parents
and carers think about that?
Yeah. Is there, or is there sibling as we will call them?
Do you know, I think the first thing I'd say,
and this is slightly to one side of your, your question is
to other parent carers that have witness there,
child witnessing their other child have a seizure, is just,
don't feel guilty about it.
You cannot prevent this.
It's not your fault that they've seen this.
I can't control where and when my child has a seizure.
And if my other child happens to be in the room,
unfortunately, I, you know,
and there is, I think initially I felt this huge surge of,
oh my gosh, I haven't,
I didn't want her to see this get out the room.
And a actually, I remember her fairly early on,
I believe she said to me, I don't want to be pushed away.
I don't want to say don't look,
because I think that's almost more scary for her than,
and again, it's really important to say here
that every single child's different.
This might not be, this was what worked for her.
It might not be the case for another child,
but she wanted to feel involved.
She wanted to know the stuff.
She wanted to be told what was going on.
Um, and actually I think sometimes she said, if,
if i, if there is a seizure, I would like it rather than you
and daddy being with her sister,
she would like it if one of us went with her.
So there was somebody with her supporting her, um,
rather than two of us looking
after the child that's having a seizure.
And you know, your natural instinct is to just deal with
what is a, you know, often a, a very serious situation.
But actually we,
that's another thing that we made sure to do.
So it wasn't necessarily about her always wanting
to watch the seizure or be in the same room,
but she wanted someone with her.
She didn't wanna be, felt like she was pushed
outta the situation.
Um, and then from there, you know, I've, I've, I guess,
yeah, what would've been fantastic is some sort
of intervention at that point from somebody
that could have had a chat to her about
what it's like seeing your sibling have seizures.
And, and I dunno if that exists,
but um, I do believe actually at the time, um,
actually this is a bit further on, it was when she was
around eight years old, young carers did provide one-to-one
support for her, which was actually brilliant.
Um, and actually it was during COVID.
And so the person came and sat in our garden with her.
Um, and at that point our other child was having, sorry,
at that point our other child was having very,
very serious amount of seizures.
She was having around 700 seizures a day
and dropping to the ground every minute or two.
Um, so these were small seizures,
but they were seizures that would just drop her
to the ground like a puppet with her strings cut.
So we had to hold her on a harness.
So for my 8-year-old witnessing this stuff, it was, I mean,
I was really scared about the impact.
Um, so that was actually great.
Young carers did provide that one-to-one person
and I think they did a bit of art
and drama therapy with her.
So she wasn't feeling like she just wanted
to be talking about the seizures or about the situation,
but there was some really clever things that the person did.
Um, and they actually did, when they did the drama therapy,
they noticed that she really opened up a lot more.
And the person that worked with her suggested to me
that perhaps we look at some drama classes for her.
And we did. And she has been going now for, well she's 14
so she's been going for six years to drama and she loves it
and that's a real outlet for her.
So it took that person, I think, to
come in For her.
And just that a lot of it really wasn't about what was done,
what was said, even though I'm sure all that was brilliant.
A lot of it was somebody just saying, this is for you.
This is about you.
Um, and is, you know, I think you touched on it earlier,
Jenna, but just, just somebody saying,
we know this is really, really tough
and this is a service for no one else.
It's just about you and somebody is coming out
and sitting down with you.
That's all it's about. And that was really powerful.
And so yes, anything like
that I think can be extremely helpful.
But I do appreciate that it's not always easy
to engage those services.
Um, and then the other thing that we've tried
to do throughout, and again, this is what works
for our child, not necessarily for all children,
but is we've been really quite open about
everything, about appointments, about medications.
It's very sort of transparent and we're very clear about it.
And I think she's found that quite helpful.
She has is not felt like a scary mystery
and um, you know, it, so we do try
and have those open conversations
and there's nothing really that we, we try
and sort of her, uh,
and, and for her that's worked well,
but it might not be appropriate for everyone.
But for her it, it, that seems to have been helpful.
I think that's it is you were saying like it's honoring
again and not, we always really thoughtful about not saying
this is go work, like you said
for your child or young person.
'cause they are individual.
But it is thinking about we constantly
as parents
or carers, what, whoever we are in this world,
if we have young people in our lives, we want
to naturally protect them.
And sometimes we think if we don't give them
that information or try
and shield it, we are protecting them.
But actually, like you said,
what we do hear from young people often is,
is it comes more scary
because they're like, well, what's happening?
I know something's happening.
And like you said, we do take it on an individual basis,
but we were talking about in one
of our podcast episodes about bereavement and grief
and we were saying again,
it comes almost more scary unknown.
And it's just being able to acknowledge
and embrace the feelings that come up.
But there was also something about support
and having that access that I just wonder if we need to keep
raising this profile for siblings.
Like you said that hearing
and seeing in your own right that you are feeling and
but sometimes not going, we're gonna focus on that.
We just broaden it and it feels like we know
that your daughter likes drama and that someone saw that
and found a way to come out.
Yeah. But go, we see you in your own. Right.
It's huge in itself.
Yeah, absolutely.
And I think that's just an example of a,
a brilliant professional that is obviously in
exactly the right job.
Yes. You know, just, just did that. And um, yeah.
So what we have a legacy from that support
because she was able to, to identify something
that would be ongoing support.
And um, you know, this is a, it's a mainstream drama group.
It's not for siblings, it's not specifically that,
but it's something that's for her
and it allows her to kind of be someone else
for a couple of hours each week.
Yeah. And that's, that's a powerful thing.
It's that losing, not losing your identity of who you are
because we can have so many labels attached to it.
So many roles that we fulfill in life.
And then it's about going, who am I still? What do I enjoy?
What makes me, me as a human being?
And like you said, just that space.
And then it feels to me there's also that space
of connection and experience of, like you said,
not grouping people together in an overarching,
like you said, your child has a disability
or your sibling has a disability,
but finding that niche connection where you can appreciate
and understand each other,
but teenagers have their own way of doing that
and finding what that looks like too.
Um, is, uh, yeah, something I thoughtful of then just going,
we're gonna clump you together
and you know you're gonna connect.
'cause uh, that can be tricky at that age too, isn't it?
Absolutely. Yeah. I think the teenage, teenage is a,
a a tricky one to navigate
and I think, yeah, as, as far as possible being led
by what they want to do.
Um, and yeah, I think
that can, that can be a powerful thing.
Do you find with your daughter, is she able to share
with her friends about her sister
or do you find that something she finds
only with trusted people?
It's something in the sibling group that
we had different responses from the young people who came,
that some of their peers
hadn't received it in the way that they hoped.
And so that had been difficult.
So just wondered, has your daughter found that in her peers
or does she find that she doesn't want to share so much of
that part of her life?
Yeah, I mean I think it varies.
We, I mean, she's extremely fortunate.
We are very fortunate. She has a lovely,
lovely bunch of friends.
Um, and many of those friends have been friends from
primary, so they've been at, at our house
and seen her sister and kind of grown up with it as well.
So that's lovely. But when she has gone to secondary
and met new friends, I think she's kind of
lightly told them about it,
but it's not something she dwells on
or makes a big deal about, about.
Um, and recently she had her birthday
and she had a bunch of friends around to the house
and her sister was there
and everyone was just, you know, thinking
that her sister was super cute
and you know, they were all having a very sweet time.
And um, I think she was, she seemed okay with that.
I think that was all fine. So yeah, I think she's, she
lightly talks about it, I would say.
Um, which is I think, you know, seems
to be a relatively healthy, healthy thing to do.
Um, it's not something she particularly hides.
It is just how it is.
Um, in fact, actually this morning, to give an example on
that, her sister was often her sister will just
what we call go to ground.
So she'll just sit on the floor
and just refuse to do anything.
And she's, she's largely nonverbal as well, so there's no,
we really struggle with things like, you know,
a little bribe of come on, get up
and then, Because he doesn't understand.
Um, so she sat in front the front door
and Tabby snapped a photo
and said, is it okay if I send this to my mate
and say I can't get out the door?
Um, which was really sweet. It was also very sweet
that she asked me to consent for her sharing a picture
with her friend, but she wanted to show, this is my reality,
I am gonna be late because I can't get out my front door
'cause my 11-year-old sister is
quiet, know she is blocking it and I can't open it.
So that was it. It was quite nice that it was able
to be sort of humorous and yeah.
You know, so yeah. So that was it.
So yes, that just came to mind.
So I think it is an open dialogue with her friends, um,
which is is is lovely really. Yeah.
How do you think as a parent
and carer, like you said, secondary school's huge
and for some
of the siblings they may be having new friendships,
new people and there might be some anxiety
for some young people about, oh, how do I bring
my new friend home for the first time
and my sibling, like you said, may we have, you know,
like you said, just different presentations that we have,
we have some young people who may spit some who might
smear their poo, some who might make different noises.
It's so much like you said.
Is there anything you would say to a parent
or carer who's child comes to them
and says like, I want to bring my new friend home,
but I dunno how to do it or how to, they might respond
or things or I'm why they're gonna do this.
How would you maybe think you would guide that conversation
or like if her came to you
and said, oh, I'm really embarrassed
that my sister's doing this, and just any thoughts you have?
Again, I appreciate we are talking generally,
but just anything you think would maybe help another parent
or carer who may find themself in that position.
Yeah, sure. Sorry, the connection's slightly bad, so, um,
probably just do and answer this who
might be struggling a bit with this.
But, um, yeah, I think it's difficult, isn't it,
because I only have my very, very limited lived experience.
But in the way I would personally approach it, um,
would probably be to encourage my child
to have a conversation with their friend first
about, about it.
Um, so that, you know, the, the child
that's coming around knows what to expect.
And I think, um, we had, and,
and maybe just Seeing how they would like us
to be when their friend arrives.
So we had the other day, um, a new friend that had not been
to the house and I said, oh, you've not been to a house,
I should probably just let you know about,
and then the name of the disabled child.
Um, and, you know, she'll do this, don't worry, she'll,
you know, she'll grab your hand and take you over there and,
and you know, I just gave them a quick briefing and,
and you know, also I perhaps, you know,
if you've got any questions like reassuring the child
that's coming around, but also making sure
that your child is okay with you talking to their friends.
Because again, with some teenagers they're like, I just,
you are so embarrassing, can you not do this?
So, um, that's what my daughter feels
like a lot of the time, I think.
So I just have to be a bit careful.
I, I don't, you know, embarrass myself
and her by trying to intervene.
But I guess just talking about how it could be best be done.
Um, and yeah, I think, I think that's it.
And maybe just sort of saying that
and explaining some of the reasons.
I think it's, I dunno if it's easy, it's possibly different,
isn't it, between the age groups,
because I would like to think that children
of secondary school age will, by that time have some sort
of understanding that, you know, there are children
with disabilities and these can look different
and this might be what they do.
Um, certainly for, in the case with all of my
daughter's friends, they've been absolutely wonderful
and very keen, like many adults are
to just do the right thing,
say the right thing, be understanding.
And um, you know, I've said
that knowing full well there's not a right thing to do
and not do, but you know, there's a, there's a willingness,
uh, to accept
and to, you know, embrace this, this situation,
which I think is, is lovely to see,
particularly in young people.
And what I always remind myself as well is actually
for all the young people that come to our house, um,
this is such a valuable learning experience for them
and for the friends that have grown up with,
with my daughter, they've grown up with, you know,
seeing my other daughter as well.
And I think not a lot of people get that privilege
to experience life alongside a person in our case with,
you know, with a learning disability.
Yes. And actually that's a huge privilege
and it's amazing, amazing life lesson,
you know, amazing for, for lessons in life.
So, yeah. Um, yeah, it's a difficult one.
It's very, it's, it very much depends on,
on the individual, doesn't it?
It does. What made me think when you were talking was
from primary age, that acceptance and growing up
and understanding, and it made me think,
do you think there's something
that if it was in the curriculum
that we learned about differences
and that we are different and our bodies can be different
and our brains may be different, then how's
that presents actually?
Is it if we have this at a much younger age
where we are more accepting of the world
before we start seeing differences, I just wonder if
that makes a difference in itself just earlier
and making this almost normal experience.
And it kind of, that helps.
And like you said, the connection that we just connect them
as human beings and this is my sister and things,
because that I wonder makes a difference if we just started
earlier with knowing that we are all different
and we show up in life differently with different needs.
I think you're right. And I think we, I think we
as society fail a bit when it comes to that.
I think we do try to talk about people with disabilities,
but often you'll see that representation
and I guess this probably works, um, pictorially,
but it might be a wheelchair user.
Um, and that's, that's, that's great
and that's really important to know
that about accessibility.
But I think what I would say is there does seem
to be a real lack of understanding for,
and I mean this actually for all ages, um,
and we probably need some better information on this earlier
age is, in my experience, severe learning disability.
So there seems to be a real struggle
if my child is lying in the pavement, for example.
Yes, yes. Um, people will come, uh, you know,
I've had people saying, oh, well can you get her to move?
And I say, well, no, I, I can't
because she can't understand me.
So I can't say, oh, I'll tell you what, get up
and we'll go and buy your bag of sweets.
Yes. I can't do that. So I, and
and so then I've had people say, oh no, I know.
And I say she's disabled.
And then people will say, I know,
but I need to get past you.
Can you just get her to move? And it's like, again, I,
I can't, and I think people really struggle to understand
that if you have a child that looks typical, that
they can have a brain that isn't
and they can, the level
of processing is not there.
And so, and I've had this so many times over the years that,
oh, can you just, would she like this or would,
and it is just, she's just the, she's just not going
to understand so,
and so I think there does seem to be a lack of awareness
among that, um,
among the public about severe learning disability.
I think people think, oh, most people can
do this or that or the other.
And I think, I mean, I think there's a lot of awareness now
around autism and sensory needs.
And again, really great.
But I think people think, oh, well I understand that.
I understand what it means to use a wheelchair.
Well, not what it means to use a wheelchair,
but I understand that some people are wheelchair users,
but the, the severe learning disability just does not,
it's just people just aren't aware of it.
And I think people continually expect my daughter to be able
to do more than she can.
And I would say bringing this back to a sibling point
of view, um, my daughter's written about this
before my older daughter,
but one of the biggest challenges she finds is the stares in
public and how other people are with us.
So that for her, and you can only imagine as a teenager,
that kind of humiliation.
Yes, that public scenes in public,
those are, I mean, they, there are enough.
My heart rate is just going so high if we,
if we are stuck in a situation in public
and we've got people staring or cutting or whatever, um,
and I also feel defensive
and angry that people aren't understanding.
So I've got all this going on
and then for my, my daughter, I, you know, as a teenager,
that that is really, really tough.
Um, and so I think that's probably one
of the things she finds toughest in, in her sort
of position as a sibling.
And so yes, there is this lack
of awareness is it is a problem.
And yeah, I would, I would like to think
that somehow we could bring
that more firmly into the curriculum
and into our understanding of what disability is.
And I think learning disability does not get the
airtime that it should.
It just doesn't, there's a wonderful book actually,
which I will just give a plug to Yes, please do.
And by a guy called Steven Unwin who is the father to a, um,
child with a l an actually an adult
with a learning disability now.
And it's called Beautiful Lives
and it's purely about learning disability
and it's quite a hard read.
I, I mean, it, it starts off talking about how people
with learning disabilities have been treated through time.
So you, I don't even need to really go into
how hard that would be to read.
And it is a tough read. Yes.
But it's a really important one. I agree.
And it brings it right the way through to,
and it's quite academic to start with.
Um, and then it comes right the way through to, um,
you know, to to what, how people
with learning disabilities are treated today.
And I just think it's a really important, uh, yeah,
a really important conversation to have
and one that we just are not talking about enough.
And I think, um, yeah,
we just need a little bit more information on that.
Um, and I think people,
whether broadcasters have their disability slots
and they're like, right, well we've covered
disability 'cause we've done this.
And I think sometimes there's a, a lack
of understanding about the range
of disabilities that there might be.
Um, and there is,
and quite rightly a big focus on
neurodivergence and that's really important.
It's, it's very, very common.
Um, so of course there would be a focus on that
and severe learning disability is more rare,
but I don't feel it gets the airtime
and attention that it does need.
Um, so yeah, I think there's a huge education job
to be done, done on that through, um, you know, for,
I I'd like to think that yeah, that everyone gets, gets some
exposure and to, to information around this.
There is also one other thing I will recommend
that I would love every professional, everyone working
with children with, with learning disabilities to watch.
And you may have already watched this,
but it's a um, it's actually a sitcom
and it's called There She Goes.
Yeah. Um, I dunno if you've heard of it.
It is on the BBC David Tenet plays the dad
and Jessica Stevenson or Jessica Heer.
No, she plays the mother.
You won a BAFTA for her role in this.
And it's absolutely wonderful.
It was written by somebody who is a comedy writer
who himself has a child with a, um, learning disability.
And it is, it is a sitcom.
It is funny, but there are also some really
very heart wrenching moments in it.
So it's, it's definitely a watch
for anyone when you're feeling in a fairly,
I would say it's so educational.
Yes. Thank you. I think that, sorry,
I just got cut off then.
Thank you. Yeah, no I think that's, yeah it's always good
to hear from parents and carers about recommendations.
I think it's really good to hear you consider professionals
'cause I think we show up in so many different areas of
your family's lives
and Nike was saying, I'm trained
as a learning disability nurse
and when you talk of the history of people
with a learning disability, I mean that's a whole
episode in itself
and longer about why I'm so passionate about the work I do
because I have worked with people of adults
who are much older with learning disability, early impact
of care that came
before that we would not be ever, I hope doing,
but there's so much from that like you said.
So it's really passionate. But I'm thoughtful.
There are professionals in hospitals like you said,
who may not have come into counter with somebody
with a severe learning disability.
So where we can help them to have some understanding
about who people are in a different way
I think is really important to raise confidence, to be able
to talk, to not be scared or not know how to approach
and just understand and still go, you're a human being.
Just need to be able to be meeting in a different way.
So those recommendations are just brilliant.
So thank you the as a bit, I was thoughtful when you talked
to professionals and thinking about um, your daughter
and exams 'cause that was something
that came up in the sibling group
as you said at the beginning about homework
and just wondered what your, there's two parts, there's one,
I wondered how you help your daughter navigate exams
and homeworks in the home
where you also have your other daughter who has her needs.
And then any thoughts you would have
for any school professionals, anyone who listens from there
that you would say, these are things I wonder could maybe
help supporting children who have siblings
with those extra needs that you would say could help.
'cause it was a real strong theme that came
through when I was in the sibling group about I've got this
homework to do, I've got exams, it's my life is really gonna
be, what's it gonna be if I don't do it?
But my sibling, like you said, has been taken
to hospital last night
and there is so much they're trying to navigate.
So I just wondered what do you think as families can help
and also what could schools learn to help
for the young people having this extra dynamic in their life
they're navigating?
That's a really interesting one actually. And it's 14.
So, um, actually they do do quite a lot of, um,
that they didn't used to do when I was at school much more
frequently, which I gen generally think is quite
a good thing gets you used to advising.
Um, and so on a very basic practical level, um,
one thing that we did need to do eventually was to enable
my older, um, and you can use on the inside,
but we can use on the outside obviously for safety.
But I was never a fan of locks on doors.
I don't like that in the house, but it became essential
because my other daughter is very loud and very destructive
and she needed her own quiet space.
And so she needs to be able to think,
actually no one's going to burst in
and pull out all of my beautifully arranged
books or all of my lovely.
Um, so that, that's something that has,
has really helped her to, and
and it shows, I think it shows a level of respect from us
to say that we really understand you need your own space.
And I always knock before I go in making sure
that she has her space respected really.
Um, and we've also been lucky enough to be able
to create really lovely desk space for her.
Um, and just making sure that she's
got all the things she needs.
So she's got a really lovely space to work in
and she's fortunate enough to have a bedroom big
enough that she can have a desk in there.
So that is somewhere she can escape to.
She also has quite interestingly with some of her friends,
um, gone to alive, um, in the middle of the city
to do some revision there
and they just get a load of snacks.
I'm not sure how much revision goes on.
There's probably quite a bit of chatting. Yes.
But it's quite a nice thing to do. Definitely.
Um, so she's done that a bit as well.
Um, and yeah, in terms of what schools can do, I think it,
it is absolutely acknowledging
and I guess it's a sibling
or a, um, or, or perhaps a parent.
Um, but yeah, making sure that they,
they have been identified as, as a young carer
and I think just talking
to the children about what they might need.
Yeah, definitely.
I, yeah,
and a bit of extra support around it, I suppose.
Whether that might be a space at school
that they could stay on and um,
and you know, do some revision or revision clubs
or homework clubs, maybe just encouraging those children to,
to make use of that so that they do get that peace
and quiet that they need to be able to do that.
Um, yeah, I think it's, yeah, I think if my child had
that way she'd be like, oh yeah, give us like
longer deadlines.
And I'm not really sure that that is, um,
I'm not a massive believer in adaptations like that just
because I think, you know, you've gotta, we've gotta,
we've gotta meet deadlines and,
and we have cha we all have challenging circumstances,
so there is an element of enabling, i,
I suppose a degree of resilience.
So enabling the person to think, right, well what do I need
to do to put in place to make sure that I do this
rather than I can't do it, this is not an, you know,
and you know, yeah.
U using it as an excuse, which I'm sure
that if given has the chance, my daughter would love
to be able to use that as a,
don't get my homework type of excuse.
But um, absolutely. Yeah.
So, so it needs to be done and,
and what do I need to help me get it done, um,
is probably where I would start with that.
But yeah, it's an interesting one isn't it?
And it will be something that we have to navigate
As was GCSEs.
I think like what was important
to me there was like you said,
looking at a space in the home, which is mine
because it made me really think, like you said, you know,
with locks on the doors, it wasn't something
that felt comfortable for you.
And we always are cautious about making sure if there is
anything where we are needing to consider um,
more restrictions or
that space in the home, the fire service.
No, so there's, we always ask
where possible parents are able to have that
with the fire service so they know
that there's a child in the home with some additional needs
that they, um, are then flagged.
And if we are having to consider that actually,
like there may be that lock on the door, like you said
for the bedroom for space at fire service
or where just for that protection as a family.
But there's something like you said about the beautifully
arranged books and how devastating that would be
that you come in and it's all gone.
How, you know, it is making, how do I keep space at
that beautiful something that's mine,
that is my space is so huge in itself
because your life can be shared so much with your sibling
and just creating something
that's mine is I think really important.
Um, because hearing from siblings where they have had uh,
things or their makeup
and it's just so hard for them to yeah.
Have that space that they've got.
'cause we know young people especially go teenage years,
it's space for them is really important.
And like you said, even knocking on the door then
just going in and going, I'm here.
It's so it is needed. It is.
I think it's really needed for them to have that. Yeah.
And I think with school, like you said, there is a balance
of we do life keeps their own challenges up,
but with some compassion understanding
and how do we create that without going,
you don't have to because life is still gonna continue,
but what adjustments can be made
to help you is really important to do.
Yeah, absolutely. Yeah.
I wondered, Sharon, you also talked about fun
and just wondered what, uh,
can you have any moments you share where you, like you said,
'cause there's things you aren't able to do,
but I imagine there's things that you do have
that you share,
which is fun too together as a family.
Yeah. Um, I guess a lot of those experiences often,
often take place in our house.
Yeah. And we are very lucky to have a nice garden
and sometimes that,
because I think
that's probably the place we can all be most relaxed
because no one has
to have an eye on my daughter for, you know, yes.
Anything, any, any danger she might get into.
So that means I can give proper attention to both girls.
Um, and so yeah, that might look like splashing in a
paddling pool or mucking around or mucking around the garden
or chasing around the garden
or riding a scooter around the garden.
Those kind of little small Yeah.
Are really, yeah, really special. And, um, yeah.
And then we do, and so yes, those are, those are kind of,
and actually when we go on holiday, there's a family
that's really nice when we, we always stay in the UK
and we normally have a holiday cottage
and just being all together in that environment's.
Lovely. Um,
and then we do also do some very
special things just for my older daughter.
So she gets to spend time either
with both of us or one of us.
Wow. Um, so we, we just make sure that we, I i we,
we do things like I actually, she was taken, um,
she was taken abroad to Greece last year.
My husband took her to be with some of his family.
So while we can't go abroad as a family, we've been able
to do those kind of things.
Um, and we were very, very, very lucky, um,
last year to get to go to see Taylor Swift.
And so I, at the ERAS tour, so, um, I
Just, I worked so hard to try and get tickets
and ended up staying up all night one night
and managed to somehow get tickets at the last minute,
a week before the cons.
Me and my daughter just went
and we stayed in a little guest house
and it was just the two of us
and it was absolutely incredible.
So, and those, I mean,
the two things I've described there are big, big, big,
you know, big things we'll always remember,
but it's, it's lots of little things we do.
So we do try and have that time for her and, and for us.
Um, which, and,
and in some ways we are almost, we can be a bit of a team
of three carers for our daughter.
So she sort of, she, she has grown up very quickly,
but I hope in a positive way.
Um, and the, the other thing that we will do for the three
of us is make sure we've always got a good
TV program on the go.
So our favorite at the moment is own murders in the
building, which we are all really enjoying.
Um, so, and,
and that will be our little bit of time in the evening
that the three of us can sit down.
Um, so yeah, we,
we watch something that we all like together.
So yeah.
Amazing. I think that was it Sharon.
It's the little things to the big things.
All of them have their place in their value.
What you described there in all of them just are important.
But also recognizing your oldest daughter needs to be able
to feel you
and your parenting as a parent in her own right too.
But then there is something to coming together as a family
and it just, it felt like it just moves like it is
fluid and moveable.
But also that wonderful description
of three carers acknowledging throughout this.
I've heard that your daughter is a carer,
but you then describe her as her daughter,
our daughter and her own Right.
And we honor that and we make that for her too.
So it's just, yeah, it was beautifully described
and to hear, I wondered as I could talk to you forever,
but I really do appreciate it's a Friday
and you need your time.
But I did also think, just wanted to ask again
for other parents and carers about yourself
because do you think that's important
and is it hard ever to make space for yourself
to be able and give yourself permission to go, I need to try
and find some space for me to keep showing up as I do,
because that's gonna be really difficult for parents
and carers to be able to find that time.
And I just wondered what your thoughts were
with that, Sharon.
Yeah, it is a, it is a difficult one
and I think it's something we're sort
of continually told by different people.
And so in some ways, I guess I possibly do more kind
of stuff for myself
and self-care than perhaps I would if I was a parent
of typical children because I, I know I have to.
So I know that if I don't, um, that
that's, that's going to be a problem.
And I suppose the thing that I've discovered this was
through COVID, um, with exercise really.
And, and that for me has been absolutely massive.
And so I started with, with running
and I have always hated running.
I've never thought of myself as a runner.
And just one day I got so stressed out with being sort
of stuck in the house with COVID, I thought,
I'm just gonna go for a run
'cause everyone else goes for a run.
So I'm doing it and I have just managed to keep that up, um,
and go for a run at at least a couple times every week.
Yeah. Um, and then the other thing, I was able
to join our local gym
and access classes, which have been amazing
properly life changing because I love for,
and again, it's not everyone's cup of tea,
but for me, the group exercise
that everyone being bound together, um,
and we've all got different stuff going on,
but just all being bound together
and doing something often really challenging.
So it might be lifting some weights or,
and really pushing ourselves.
I find it so uplifting.
So, um, yeah, I, and we are very, both me
and my husband are very, very protective over
that exercise time.
So we always make sure that we get to get to do
that really, um, that it's, it's a bit of a non-negotiable.
And the other thing that we've done for wellbeing is I take,
uh, a drug called Sertraline, which is an antidepressant.
I took it initially when I had, I had postnatal depression
after I had poly, um, which is unrelated
to any sort of disability.
But that was when I first took, took that medication
and it was so helpful for me.
And then when things started to get very stressful
with poly, it's really helped my anxiety
and I see it very much
as a tool in a much bigger package of things.
Um, and I'm also super, super lucky to be able
to do counseling every month.
Um, which, um, we are just, we are very lucky
to have some budget for that.
So we are able to do that.
And that has been enormously helpful.
So I kind of see, yeah, I quite a package
of self care
and it's, it's super, super important to me.
Um, and I appreciate that it is not, there are lots
of budget and time constraints
and it's not always easy for people to do that.
So I definitely don't mean to say
everyone just go and do all this stuff.
'cause it's not always open to everyone.
Um, people who might have disabilities of their own or,
or you know, may maybe in a single parent household
and don't have someone to just say, can you watch the kids?
I'm going to go for a run. So I do appreciate that.
That's really difficult. Um, for some people
I would say actually there's some great,
I really did like yoga with Adrian on YouTube.
Yeah, that's really good.
Um, she's just a really good yoga teacher
and that's a, a quite a nice accessible
one that can be done from home.
And I did that a lot during COVID.
There's loads of lovely yoga workouts on
there, which is always really nice.
I think what, that's it Sharon.
It's about, it's not a, um, it's not a negotiable
and we put, like you said, you are totally acknowledging
that where you are able to make those spaces
to do these things, but you're not saying everyone
has the ability to do that.
But what it is is about recognizing that there are extra
things, I can't think of the right word apart from things,
but like extra things you need to do in life
because of the extra needs you have with your child.
And then you have your child who is a sibling.
So you've, there is extra things that you go, I'm doing
to be able to do that.
I need to look where I can look after myself.
And I think that's the bit that's really important is going,
what can I do to look after myself?
Because if that's really important to show up in other areas
of my life, got to look after myself and it's what can I do
and how can I do it?
Mm-hmm. That's what's, to me really important.
'cause that's the thing we see where often parents
and carers is they push themselves so far down
that they lose their sight
of I'm important in my own right too.
And that really is the bit like, I'm really heartbreaking
'cause I like you are important,
but that can be difficult to actually see
and recognize in yourself.
Yeah. I want, I wondered Sharon, finally, what's your hopes
for siblings for the future?
What do you hope for them as a parent if you could have that
wish, that hope for them, including your daughter,
what do you hope it's so big,
but just what comes naturally to you when I say hope
for siblings, what would you hope for them?
I think early recognition of their status
as a sibling, I think.
And I think that comes both in within the family,
but actually externally I think is really important
because often siblings will be watching a, a queue
of professionals coming in
and out the door for their, their sibling.
And no one's asking about them,
they're just walking past them.
And I just think, yes, having
that early, you are a sibling, we get, this is hard,
here's some stuff that we can do to help.
I mean this is obviously in a, in an ideal world
with a blank checkbook, but, um, you know, but you know,
and, and and also courses like the one
that you've recently put on, and I specifically say courses.
I mean, I dunno if you would describe it as a course,
but what I really liked about it was the structure
and the purpose of each session was really carefully thought
about and marked out.
And I think my daughter would've got a whole lot less from
it if it was a general play session with siblings
and we're all gonna do some arts and crafts.
It isn't that lovely. I think she'd have found
that quite difficult.
And I, and what I think you guys did,
and obviously I wasn't in the sessions,
but what I can imagine happened was you built a framework
to enable conversations.
And I think that's really powerful
because you can just, you know, stick a load
of siblings in a room together.
They're not gonna talk about those things.
They're gonna talk about Taylor Swift or whatever else.
Absolutely. Which is fine
and very, very important topics of conversation.
But I think what you did with something
that was very structured
and it was staffed by psychologists, you know,
these are people that are professional people
and I think it was, yeah,
I think it was absolutely brilliantly done.
Um, and it, yeah, I think a fantastic intervention.
Uh, yeah. So, so that's very specific, very tailored,
very well thought through intervention on top
of some general recognition would be what I hope
for, for, for siblings.
Um, and I think we are very lucky
to have been able to access it.
It is not something that I've heard of in other areas.
Um, so as soon as I got that letter through, I, um,
strongly encourag my daughter to attend.
Even though naturally like many teenagers,
she was like, oh, I don't know.
I can't be bothered. Yeah. And I, yeah.
And I'm so pleased we did.
I think that's it. I think there's part of me,
when you said about a blank check,
but there's something that I think
as professionals we can take away from that doesn't
expand on any cost.
That, like you said, when we come into the home, we see you
as a family and the family
includes the siblings in the impact of it.
So like we said at the beginning, just seeing and hearing
and going, would they like to meet me?
Would they like to know what I do?
Do they have any questions, um, about
what the sibling may have?
Having that and just going I see you is huge signposting to
what resources we have.
I think there's also elevating this profile up about saying
that siblings are important
and we need to be recognizing them
and what can we do, what can commissioners do to help them?
And I think, like you said, the sibling group, we brought
so many other professionals in our team into mm-hmm.
Uh, support workers to nurses that were,
are registered in other professions
to assistant psychologists.
But like you said, the way in which it was cultivated
in, uh, it was like you said, activities that brought a
conversation or physical activities
that didn't always mean necessarily they had a pressure
to talk to them.
Being able to relax and just be them.
And so it had this ebb and flow.
But when you saw, what made struck me was when you said
about that connection where there was a young person
who connected with another young person
who you could see in their eyes they look like,
or your sister rather does that suddenly.
Mm-hmm. And that was the shift for me
or the first time you saw the smile
between the teenagers when they're like on the phone when
they first come in and we're like,
so cool and we're not gonna talk.
And then they just share a giggle or something together.
And like you said, you start seeing that relationship
and just their name might drop in without about their
sisters or brother.
Or it's that connection suddenly, like you said,
of not being alone
and permission to be able to talk in a space about
what my life's like without judgment to just felt so huge.
And I think there's, there's always things that we can learn
and always things we can get better.
Some at a cost
and some is as simple as when you come through by door,
see us all, see us all
and give us space to be able to, when all
of us are impacted in our own way.
And that's just huge in itself.
Absolutely. Sharon, thank you so much for coming on.
It is, it's such an incredible, insightful conversation with
resources that we will be able to share
or think about, um, where there is siblings support
that we can look at to be able to signpost families
and yeah, it would be wonderful maybe if you have space
to come onto podcast talking about your daughter
and a parent in your writing that way too.
'cause that would be some bits that just came through
that I'm like, oh, I know there's gonna be a parents
and carers who are gonna find it
so valuable in what you've shared.
So thank you.