WEBVTT

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Hi, my name is Jordan. I am a special education

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teacher from the UK. I share my passion for everything

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communication, sensory regulation and fun lesson

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ideas for my classroom of disabled pupils aged

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4 to 11. Each week I am joined by experts in

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the field answering your questions and sharing

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our knowledge and experience working alongside

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our beautiful young people. Let's get started.

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Hello everybody and welcome to the Sensory Classroom

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podcast. My name's Jordan. Today I am joined

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by a special guest, Josie, who is a sibling of

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somebody with special educational needs. And

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I thought it was really important to talk about...

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siblings today because it is a very important

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role and one that you don't choose to do, one

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that is chosen for you and yet there are so many

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fantastic siblings out there who care and adore

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their siblings so much and actually are an incredible

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support network for them. Welcome Josie to the

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podcast. Thank you, thanks for having me. So

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first of all let's talk about your family. What

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does your family dynamic look like so we can

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imagine where you come from and what brings you

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to this space? Yeah, no, of course. Obviously,

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I'm Josie. I'm the oldest sibling. I have a younger

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sister called Rosie and she's 19. I would say

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she's my little sister, but she's not very little

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anymore. And we're actually currently transitioning

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to adult services and kind of all that stuff.

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Rosie is classed as a child with PMLD. And so

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she has quite profound needs and requires care

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from an adult at all times throughout the day,

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be that me and my mum at home or her teachers

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at school, her TAs. support workers, whatever

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that kind of looks like for us. So Rosie was

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born when I was three, so there's only a three

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-year age gap between us. So it's pretty much

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all I've ever known. I don't have any other siblings,

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so I don't know what life is like with a normal,

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typical or a normal sibling, so to speak. And

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yeah, this is pretty much how we've always grown

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up. So she is full -time in a wheelchair. Our

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whole house is adapted. We have a lift in the

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house, which is always something that people

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find a bit crazy. She's hoisted full -time. She's

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spoon -fed. All of that is done by either me

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or my mum. And then my dad does help as well,

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but he lives away. So that's quite nice that

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she gets the option to go to either or house.

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But yeah, our life has been very different, obviously,

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because my sister cannot access things typically.

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That doesn't stop us as a family, though. We're

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very much, she will do it if we can find a way.

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But obviously, as she's got bigger, that is harder.

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But then I've got bigger, so I've been able to

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help a bit more. But it has very much kind of

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shaped my life. as an adult growing up as well

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and my whole kind of journey professionally has

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now been because of my sister yeah so let's talk

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about that let's talk about what you do professionally

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and then maybe we'll go back to think about being

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a child sibling of somebody with PMRD so what

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do you do now what what what has all your life

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experience led you to become So my biggest kind

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of achievement now, which is all due to my sister,

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is in January of last year, I set up a children's

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charity. So we're based in Coventry in the Midlands

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and the children's charity is called Ladybug

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Lodge. My little sister, well, Rosie has a, I

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shouldn't call her little because she's really

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not. Rosie had a VTech Ladybug toy that she got

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for her third birthday and she still has it now.

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We have about 40 in the loft that my partner

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has to repair because she keeps breaking them.

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And yeah, Lady McGlodge was basically named after

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her toy and our experiences as a family growing

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up. Not always accessing activities that we could

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do together, or maybe we were accessing things

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that didn't really work for Rosie, but worked

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for me, or they really worked for her. But then

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I was kind of just sat watching. And obviously,

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as I got bigger, I didn't want to go to soft

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play, maybe, or I didn't want to do those things.

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But she still really does. So yeah, in January

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of last year, I got together with some incredible

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parents. friends ex -professional friends whatever

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that kind of is to set this charity up with the

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main aim that the whole family is at the session

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no matter what is going on it's not just the

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send child and their parent or them and their

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PA actually the whole family can come and do

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activities together so that's kind of snowballed

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in the past year and a half and we provide a

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heck of a lot of activities for families with

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children and young people up to 25 of special

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educational needs we've got term time groups

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after school weekend sessions our holiday provision

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is crazy but we're already supporting nearly

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400 families which is just incredible but a lot

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of that is families coming with their siblings

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who get to join in not necessarily all the time

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with the thing their send sibling is doing but

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they get to be in an environment where other

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siblings completely understand or us as staff

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and volunteers understand because maybe that

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was us 10 years ago or we've known that journey

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and for families as well for parents they're

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not having to go where's where's he going to

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go today is he going to go to club do I have

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to pay for him to go to tennis club will I take

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my son child to a messy play session or where

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do I put everyone do I have to arrange a sleepover

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because I can't get them both there it's not

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suitable actually no now they can all come to

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the same thing and not be trying to juggle all

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those things at the same time um which was obviously

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really important from my point of view because

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i would have loved something like that when i

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was younger just to be able to all go to the

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same thing yeah so what is the reality then without

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a charity like yours without that data to activities

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that are suitable for all can you remember any

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specifics or of events where you felt either

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that rosie it wasn't suitable she was just put

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on her brakes nothing was me and her needs and

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you know she was passive and not getting anything

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out of it or that she was having a great time

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and you were bored and under stimulated as well

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yeah so my sister loves bowling like things like

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that she's successful in her wheelchair and that

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was never something I was interested in so her

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birthday party would always associate around

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oh we're going bowling because her and her friends

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could do that and that was something I'd never

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pick and even though lots of families would enjoy

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that It just wasn't my preference. But then I

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used to swim when I was younger. I did swimming

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galas at school. And a lot of the time she couldn't

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get into the pool or even get into the facility

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itself because it wasn't accessible. And just

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little things like if I had a gymnastics competition

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or I was playing netball or whatever that was.

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She couldn't even get there. It wasn't even she

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can't join in because that was pretty much given.

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But she often couldn't actually get in the front

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door, which was really hard, obviously, because

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then she couldn't even watch if she wanted to.

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And even now, some of those facilities don't

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exist. But it was difficult in that sense that

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we couldn't even have that family time where

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I enjoyed that she could come along. But then

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the thing that she did enjoy, yes, I could go.

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Like she loves messy play. Now, I love mostly

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playing. It's great. I think it's amazing. But

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when I was probably 12 or 13, I probably thought,

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oh, that's a bit weird. And she would love doing

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that or she'd love going to a music session where

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I might feel a bit uncomfortable because it's

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a bit more public and group involvement. But

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that was the only thing she could go to. We didn't

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have a choice in that sense. So she loved that.

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But I was often sitting there going, oh, this

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is a bit much for me. This is not my personal

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kind of Saturday activity choice. But obviously

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she'd really enjoyed that. So it was very much

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a big toss up. what can we do to suit both of

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us but it didn't often usually work that there

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was one that did suit us both at the same time

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yeah and then like you said even if it's one

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of your choice well it would be nice if the other

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one could at least be in the building yeah to

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at least enjoy observing the other person you

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know doing what they're doing like netball or

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whatever that makes so much sense and it's very

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much still ongoing as you say physically accessible,

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having accessible toilets, having ramps. Yeah,

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definitely. All of those things are still very

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much in progress. Is that something really important

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when you were choosing a location for your setting?

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Yeah, I think for us especially, I've obviously

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before Ladybug Lodge, I've worked as a teacher

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in an autism provision base. I've worked in special

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needs schools and obviously the range of need

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is so high, but it always comes down to there's...

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autism sessions or there's sensory processing

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sessions and there's quiet sessions but even

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still she still couldn't get in and I always

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remember specifically we went to a local trampoline

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park and they were advertising there's a scent

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session there's a scent session I was like great

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because she loves rebound at school we have a

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trampoline in the garden we can make it work

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between us like if we take enough people we can

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lift her up out of her chair and onto a trampoline

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and she'll love that And we turned up and they

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were like, OK, like you're here for the session.

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We were like, yeah, like let's sign in, whatever,

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did all the waivers, walked through the door.

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And the only way to get to the trampoline was

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up steps. And I said, well, she can't actually

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get in. And they went, oh, well, you have to

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carry her up. I said, but you wouldn't say that

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to someone else. You wouldn't say that to a child

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who was walking. And yeah, you just wouldn't

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say that. So things like that were really important

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that actually if a child's coming in a wheelchair,

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be that powered, a small one, self -propelling,

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whatever they're doing. that they could get in

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the venue initially, but then even still once

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they're in, that the point of access wasn't just

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that they can get in the venue. The doors need

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to be double doors. They need to be automatic.

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There needs to be buttons. There needs to be

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a change in places, mobile hoists, ceiling hoists,

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whatever that kind of setup is. There needs to

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be an option. And yes, even now, we don't have

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a ceiling hoist in half the rooms because we

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hire a local SEND primary school. And obviously

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they are not as adapted as... They possibly can

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be because they're suiting a massive range of

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needs. But if a child wants to get out in soft

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play, we have a mobile hoist that we can take

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to soft play. And in an ideal world, we'd just

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have ceiling tracking everywhere. But obviously

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we can't do that unless we had our own venue.

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But at the same point, they can still get out

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in a mobile hoist. I can take it outside. We

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can take it into the hall. We can take it wherever

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we need to. But if they need to change in places,

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we've got the bed with sides. It's comfy. It's

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not just a massage bed that's been put in the

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cupboard and gone, oh, that's suitable for you

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to get changed on. It's private. It's bespoke.

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We've got all them things. And that for me, especially

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because my sister, I always say she can't get

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in and access it to the way we'd want to go somewhere

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and access it. Then there's no point doing it

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because there's going to be children with needs

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just as high as hers, but also children that

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need even greater need. And if we can't even

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meet at that level. it's not it's not inclusive

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basic needs of toilet access you know then you

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can't call yourself a send session can you and

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i can see totally see where that frustration

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comes from years of attending these oh finally

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there's a session that we can both enjoy and

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then you can't even get through the door yeah

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It's false advertising, isn't it? Yeah, exactly.

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I know they call it greenwashing when it's about

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eco stuff. Maybe it's the same disability washing,

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you know? Yeah. They're just ticking a box to

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say they're doing a SEND session and actually

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there is so much more to meeting. that if you

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actually cared about the disabled community that

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you would make fully accessible sessions and

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also can we just say not on a random time on

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a saturday that no one else wants anyway i was

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gonna say this about the trampoline session so

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yeah the trampoline center and i'm sure families

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who listen to this who are local first will know

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exactly what i'm talking about their center is

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on sunday at four till six my sister's like on

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wind down time she loves to see bb's bedtime

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story every night she's ready to watch that she's

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not ready for a day like an hour trip out to

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trampolining yeah like even me as an adult I'd

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be like oh that's a bit much for me on a Sunday

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especially if she has school the next day like

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that's totally inappropriate isn't it it's just

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it's not appropriate at all and the amount of

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sessions we've been to where it's on like a Wednesday

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night at eight o 'clock at night and it's like

00:11:28.509 --> 00:11:31.649
well no she wants to go to bed like if you actually

00:11:31.649 --> 00:11:33.909
saw how much she's done today when it's physio

00:11:33.909 --> 00:11:36.679
swimming she's done all these things She's exhausted

00:11:36.679 --> 00:11:38.879
come four o 'clock, let alone then finding the

00:11:38.879 --> 00:11:41.559
energy to come out again. But also then on us

00:11:41.559 --> 00:11:45.059
as a family to extend our day even more so, because

00:11:45.059 --> 00:11:47.299
I think they often forget that actually parents

00:11:47.299 --> 00:11:49.379
and siblings who are supporting with the care,

00:11:49.539 --> 00:11:52.000
when they go to bed, that is usually your time

00:11:52.000 --> 00:11:54.379
off and that's your bit of respite. But if we're

00:11:54.379 --> 00:11:57.059
then dragging the day even longer, as much of

00:11:57.059 --> 00:11:59.500
that experience is nice. We've then not had that

00:11:59.500 --> 00:12:02.500
decompressing time or maybe we're preparing medication

00:12:02.500 --> 00:12:04.519
or doing food prep or something in that time.

00:12:04.990 --> 00:12:06.970
We've had to shovel that back and then maybe

00:12:06.970 --> 00:12:08.850
we're not going to bed for two hours later because

00:12:08.850 --> 00:12:11.350
we've wanted to do something nice and then probably

00:12:11.350 --> 00:12:14.549
had an issue anyway. Or she's then tired because

00:12:14.549 --> 00:12:16.549
of it. So it's kind of, yeah, but that still

00:12:16.549 --> 00:12:18.590
happens everywhere. Every session we see, the

00:12:18.590 --> 00:12:20.830
times are just so inaccessible. If you could

00:12:20.830 --> 00:12:23.470
use this platform, imagine you're in a room and

00:12:23.470 --> 00:12:27.850
all of these big businesses are listening. From

00:12:27.850 --> 00:12:31.490
a sibling's point of view, what would you say

00:12:31.490 --> 00:12:35.059
to them? To help them understand the importance

00:12:35.059 --> 00:12:40.320
of having accessible, realistically timed, fully

00:12:40.320 --> 00:12:43.279
accessible sessions for you as a sibling and

00:12:43.279 --> 00:12:46.000
you as a family and for your sister. Yeah, I

00:12:46.000 --> 00:12:48.120
think they need to look at it in a sense that

00:12:48.120 --> 00:12:51.879
her needs are not separate from our needs and

00:12:51.879 --> 00:12:55.679
that it should suit us, not her. And that isn't

00:12:55.679 --> 00:12:57.820
a way of saying, OK, well, she can come at this

00:12:57.820 --> 00:13:00.559
time. but you get to tag along as well. Actually,

00:13:00.639 --> 00:13:02.860
no, we want to come on our schedule, which is

00:13:02.860 --> 00:13:04.860
on a Saturday afternoon or on a Saturday morning,

00:13:05.039 --> 00:13:07.419
or we've just been out for lunch on a Sunday

00:13:07.419 --> 00:13:08.940
afternoon and we want to go and do something

00:13:08.940 --> 00:13:11.200
afterwards. We're not the second thought. We

00:13:11.200 --> 00:13:13.220
shouldn't be the afterthought to your normal

00:13:13.220 --> 00:13:15.820
session, which I think is what they often see

00:13:15.820 --> 00:13:17.419
it as. There's, oh, we can't make as much money

00:13:17.419 --> 00:13:19.740
on this session. Yeah, but you could if you actually

00:13:19.740 --> 00:13:22.139
put it at the right time. And they often don't

00:13:22.139 --> 00:13:24.710
see that point of view. But I always say you

00:13:24.710 --> 00:13:26.990
have to have lived experience and businesses

00:13:26.990 --> 00:13:31.450
should be consulting local schools, local parents,

00:13:31.629 --> 00:13:33.970
care forums, whatever that looks like to say,

00:13:34.009 --> 00:13:35.830
actually, what does work? Because they're just

00:13:35.830 --> 00:13:40.070
doing it as a we've made it inclusive, but not

00:13:40.070 --> 00:13:42.529
accessible. So you're completely missing the

00:13:42.529 --> 00:13:45.840
point. But yeah, I think they need. massive massive

00:13:45.840 --> 00:13:49.100
input from families siblings even the young people

00:13:49.100 --> 00:13:51.500
themselves because I know so many young people

00:13:51.500 --> 00:13:53.759
who could say I don't want to do that at eight

00:13:53.759 --> 00:13:55.799
o 'clock at night I want my bedtime routine I

00:13:55.799 --> 00:13:58.019
want whatever that is and that they need to move

00:13:58.019 --> 00:14:00.899
that to the daytime and ultimately try it if

00:14:00.899 --> 00:14:02.620
it doesn't work fair enough that's completely

00:14:02.620 --> 00:14:04.620
fine because not everyone wants to do those things

00:14:04.620 --> 00:14:07.740
but arguing that oh it's not gonna sell it's

00:14:07.740 --> 00:14:10.200
not gonna make us as much money well how do you

00:14:10.200 --> 00:14:13.389
know you don't know until you try And we always

00:14:13.389 --> 00:14:15.169
say that at Ladybug Lodge, we don't know if something's

00:14:15.169 --> 00:14:17.049
going to work until we try. And that has been

00:14:17.049 --> 00:14:18.830
things that haven't worked or families haven't

00:14:18.830 --> 00:14:21.649
enjoyed. But if we didn't do that, we wouldn't

00:14:21.649 --> 00:14:23.590
get the feedback. Whereas all these companies

00:14:23.590 --> 00:14:26.889
get now is negative press because families aren't

00:14:26.889 --> 00:14:28.370
happy with it, but then they don't do anything

00:14:28.370 --> 00:14:30.970
about it. So yeah, it's an interesting one. They

00:14:30.970 --> 00:14:34.409
need to really kind of see it as a, if this was

00:14:34.409 --> 00:14:37.610
a normal family, for example, what would they

00:14:37.610 --> 00:14:40.190
do? They'd come at two o 'clock on a Saturday,

00:14:40.389 --> 00:14:43.470
eight o 'clock. Looking back to when you were

00:14:43.470 --> 00:14:47.990
a child and a young teen, if you had really great

00:14:47.990 --> 00:14:50.809
and broad access to those activities that you

00:14:50.809 --> 00:14:53.330
could enjoy with your sister at a suitable time

00:14:53.330 --> 00:14:55.269
that were totally fun for both of you, just like

00:14:55.269 --> 00:14:57.710
you offered yours, if you had a really broad

00:14:57.710 --> 00:14:59.649
section, if that was available to you when you

00:14:59.649 --> 00:15:02.289
were younger, what difference and impact would

00:15:02.289 --> 00:15:05.919
that have had on you as a sibling? and for your

00:15:05.919 --> 00:15:08.360
sister and maybe your parents as well yeah well

00:15:08.360 --> 00:15:11.019
I think it'd just be massive like we we offer

00:15:11.019 --> 00:15:13.559
in the holidays especially um which is so loved

00:15:13.559 --> 00:15:16.440
is swimming in a hydrotherapy pool um and it's

00:15:16.440 --> 00:15:18.440
private session there's only six people in the

00:15:18.440 --> 00:15:20.360
pool at a time the pool is heated which is such

00:15:20.360 --> 00:15:22.879
a key thing for my sister that if we go to a

00:15:22.879 --> 00:15:24.779
standard swimming pool it's too cold and she

00:15:24.779 --> 00:15:27.019
wants to get out um and because of her needs

00:15:27.019 --> 00:15:28.899
she can obviously do a bit of physio in the pool

00:15:28.899 --> 00:15:31.399
and she needs hoisting in if we could have done

00:15:31.399 --> 00:15:34.679
that every weekend since she was little, the

00:15:34.679 --> 00:15:37.639
difference in her leg mobility, her arm ability,

00:15:37.820 --> 00:15:40.120
all of that could be astronomical now, but we

00:15:40.120 --> 00:15:42.700
will obviously never know, which I think is really

00:15:42.700 --> 00:15:46.379
hard because she can swim nearly, which is incredible

00:15:46.379 --> 00:15:49.940
for her. But if she had that regular input all

00:15:49.940 --> 00:15:52.659
the time, we could go swimming all the time and

00:15:52.659 --> 00:15:55.500
not be thinking about, oh, we're working, we're

00:15:55.500 --> 00:15:57.200
not playing. Actually, she probably could play

00:15:57.200 --> 00:15:59.659
and join in with some activities. games whereas

00:15:59.659 --> 00:16:02.120
now because we haven't had that time we're so

00:16:02.120 --> 00:16:03.820
quick to go let's do a bit of physio let's do

00:16:03.820 --> 00:16:06.000
this and it takes the fun out of it whereas if

00:16:06.000 --> 00:16:08.320
we'd been doing this forever now it would just

00:16:08.320 --> 00:16:10.559
be fun which we're kind of getting to that point

00:16:10.559 --> 00:16:13.220
now but when I was 12 I would have loved to have

00:16:13.220 --> 00:16:15.440
got in the pool and been diving around and smashing

00:16:15.440 --> 00:16:17.240
her and soaking her and not worrying that oh

00:16:17.240 --> 00:16:18.840
she's going to swallow too much water or she's

00:16:18.840 --> 00:16:20.840
not going to react in time or we're going to

00:16:20.840 --> 00:16:23.620
need three people in the pool actually she would

00:16:23.620 --> 00:16:26.840
have just been able to play and I think for me

00:16:26.840 --> 00:16:29.200
when I was younger because I didn't have other

00:16:29.200 --> 00:16:33.179
siblings I very much relied on friends to get

00:16:33.179 --> 00:16:35.799
like fun moments with and yes we've had amazing

00:16:35.799 --> 00:16:37.980
experiences and memories that I will never forget

00:16:37.980 --> 00:16:40.580
but there's things that I'm going oh but I've

00:16:40.580 --> 00:16:42.720
never done that with her and I've only done that

00:16:42.720 --> 00:16:44.960
with my friends or she's never seen me do this

00:16:44.960 --> 00:16:47.179
or we've never done that together and I think

00:16:47.179 --> 00:16:49.559
that would have been the big difference but I

00:16:49.559 --> 00:16:51.929
think especially for my mum Trying to split that

00:16:51.929 --> 00:16:55.389
time was so hard because my sister's needs are

00:16:55.389 --> 00:16:57.389
obviously so much greater than mine. But for

00:16:57.389 --> 00:17:00.289
her to have maybe had some times where she can

00:17:00.289 --> 00:17:02.730
just sit and watch us play and not be thinking,

00:17:02.830 --> 00:17:05.509
I need to do this soon, or I've got to do this,

00:17:05.529 --> 00:17:06.970
or I'm starting to think about this, or I've

00:17:06.970 --> 00:17:09.130
got to drop Josie here soon because I need to

00:17:09.130 --> 00:17:11.269
take Rosie to there. She wouldn't have had that

00:17:11.269 --> 00:17:14.430
constant kind of monologue and blocking in her

00:17:14.430 --> 00:17:16.309
mind that she has to do all these things. She

00:17:16.309 --> 00:17:18.190
might have just been able to sit and go, this

00:17:18.190 --> 00:17:21.230
is really nice. They're playing. i can do something

00:17:21.230 --> 00:17:23.369
leisurely because i'm not thinking about it too

00:17:23.369 --> 00:17:26.710
much um but yeah i we did have obviously amazing

00:17:26.710 --> 00:17:29.490
experiences but even now i think it's only been

00:17:29.490 --> 00:17:31.990
in the last four or five years that we've done

00:17:31.990 --> 00:17:34.789
things that rosie's really loved like we went

00:17:34.789 --> 00:17:36.690
kayaking for the first time she went rock climbing

00:17:36.690 --> 00:17:39.289
and she loved that and we have traveled further

00:17:39.289 --> 00:17:41.500
to do that But we would have done that every

00:17:41.500 --> 00:17:43.819
single year if we knew it was an option. Whereas

00:17:43.819 --> 00:17:46.059
it's only really started to come up now, which

00:17:46.059 --> 00:17:47.559
I think is a shame because obviously as she's

00:17:47.559 --> 00:17:50.140
got bigger, her needs have got bigger and things

00:17:50.140 --> 00:17:52.299
are now less accessible because she's heavier

00:17:52.299 --> 00:17:54.980
and we can't lift. Whereas when she was five

00:17:54.980 --> 00:17:57.039
or six, we would have easily done these activities

00:17:57.039 --> 00:17:59.740
quite often. Whereas now we have to be limited

00:17:59.740 --> 00:18:03.200
because of her tiredness or our backs or whatever

00:18:03.200 --> 00:18:05.299
that is or manual handling equipment. Whereas

00:18:05.299 --> 00:18:06.640
if she could have done that when she was really

00:18:06.640 --> 00:18:08.740
young. it could have been something that she's

00:18:08.740 --> 00:18:10.700
done every single year every month or been an

00:18:10.700 --> 00:18:13.579
activity that she actively chooses for actively

00:18:13.579 --> 00:18:16.940
wants to do whereas now she hasn't really had

00:18:16.940 --> 00:18:19.019
that and it's a bit more sporadic like oh we're

00:18:19.019 --> 00:18:20.660
going to try this and so i think that would have

00:18:20.660 --> 00:18:23.680
just been massive for us to have more of a range

00:18:23.680 --> 00:18:25.599
of options for her as well but it wasn't just

00:18:25.599 --> 00:18:27.680
we're going to do this each weekend it was actually

00:18:27.680 --> 00:18:29.700
no yeah because you only had one option yeah

00:18:29.700 --> 00:18:32.400
we yeah yeah a lot of the time it was this or

00:18:32.400 --> 00:18:35.259
that whereas now we can say oh okay when we go

00:18:35.259 --> 00:18:37.460
on holiday do you want to do activities on holiday

00:18:37.460 --> 00:18:39.480
do you want to go kayaking yeah you do okay we

00:18:39.480 --> 00:18:42.220
can do that whereas before there wasn't always

00:18:42.220 --> 00:18:45.240
that option or readily known that there was that

00:18:45.240 --> 00:18:47.859
option that wasn't just for her again it wasn't

00:18:47.859 --> 00:18:50.920
a oh we'll send her away with carers or nurses

00:18:50.920 --> 00:18:52.519
or whatever that is and she will do those fun

00:18:52.519 --> 00:18:54.759
things but I will then be at home yeah you're

00:18:54.759 --> 00:18:56.460
not getting that shared experience yeah it's

00:18:56.460 --> 00:18:59.559
still not the same I think that's what this podcast

00:18:59.559 --> 00:19:02.200
is really showing actually that it's not about

00:19:02.200 --> 00:19:04.579
access for her necessarily of course that's important

00:19:04.579 --> 00:19:07.880
it's not also about um great activities for you

00:19:07.880 --> 00:19:11.900
and you know so that you can actually access

00:19:11.900 --> 00:19:13.640
other things other than being a carer because

00:19:13.640 --> 00:19:15.660
that's important as well and meeting other people

00:19:15.660 --> 00:19:19.480
it's about that shared experience sometimes and

00:19:19.480 --> 00:19:22.619
enjoying sibling just being siblings yeah what

00:19:22.619 --> 00:19:26.140
was it like growing up with a disabled sister

00:19:27.409 --> 00:19:29.710
different I think but then I also don't know

00:19:29.710 --> 00:19:32.269
any different and um someone said to me the other

00:19:32.269 --> 00:19:34.269
day if I change anything around my life what

00:19:34.269 --> 00:19:36.569
would I change like I would never say I'd change

00:19:36.569 --> 00:19:39.230
Rosie there are things I would love I'd love

00:19:39.230 --> 00:19:41.670
for her to talk a bit more um I'd love for her

00:19:41.670 --> 00:19:43.549
to walk like that would be amazing but then I

00:19:43.549 --> 00:19:45.490
also think she would cause absolute havoc so

00:19:45.490 --> 00:19:48.990
maybe it's not a good idea um but yeah it obviously

00:19:48.990 --> 00:19:52.700
was different and there was yeah many memorable

00:19:52.700 --> 00:19:55.900
moments like being called out of a GCSE exam

00:19:55.900 --> 00:19:58.339
because she'd been rushed to hospital and just

00:19:58.339 --> 00:20:00.819
things that no none of my friends experienced

00:20:00.819 --> 00:20:04.259
that really but I think we were lucky in the

00:20:04.259 --> 00:20:06.859
sense that my sister's primary school did a like

00:20:06.859 --> 00:20:09.220
Saturday and summer play scheme when she was

00:20:09.220 --> 00:20:11.200
really young so I was probably only 11 at the

00:20:11.200 --> 00:20:14.059
time and siblings were welcome to go to that

00:20:14.059 --> 00:20:15.660
and there was two other siblings who were the

00:20:15.660 --> 00:20:18.839
same age as me and even though we didn't We weren't

00:20:18.839 --> 00:20:20.420
necessarily best of friends or whatever, but

00:20:20.420 --> 00:20:22.000
it was nice that when there was something going

00:20:22.000 --> 00:20:24.759
wrong with our siblings, we had that little check

00:20:24.759 --> 00:20:26.579
-in with each other because a lot of my friends

00:20:26.579 --> 00:20:29.460
at school, if I was at hospital with my sister

00:20:29.460 --> 00:20:32.000
in the evening, maybe I'd literally left school,

00:20:32.059 --> 00:20:33.960
got the bus, got to the hospital, and I'd stay

00:20:33.960 --> 00:20:36.180
there until nine o 'clock, get home, go to bed

00:20:36.180 --> 00:20:38.259
and do the same again. That could have been two

00:20:38.259 --> 00:20:40.420
weeks in a row if she was having surgery or she'd

00:20:40.420 --> 00:20:43.099
been ill. All my friends... didn't understand

00:20:43.099 --> 00:20:45.240
because they just don't and it's not that's not

00:20:45.240 --> 00:20:47.140
their normal whereas for me that was my normal

00:20:47.140 --> 00:20:49.839
and it was nice then to have those two siblings

00:20:49.839 --> 00:20:52.220
that I know to just say oh we're back in hospital

00:20:52.220 --> 00:20:54.700
again and they kind of understand the whole yeah

00:20:54.700 --> 00:20:56.779
well do you need anything and it wasn't they

00:20:56.779 --> 00:20:58.779
weren't saying that just to be polite they genuinely

00:20:58.779 --> 00:21:00.759
would offer things that they knew we would need

00:21:00.759 --> 00:21:03.039
and it would be things like oh could you bring

00:21:03.039 --> 00:21:05.059
us some syringes we've left this at home we've

00:21:05.059 --> 00:21:06.960
left this and they would completely understand

00:21:06.960 --> 00:21:09.980
that whereas I don't feel like any of my friends

00:21:09.980 --> 00:21:11.819
fully understand. I feel like even now, some

00:21:11.819 --> 00:21:13.819
of my friends don't fully understand. And I mean,

00:21:13.819 --> 00:21:15.140
all my friends love Rosie and those that have

00:21:15.140 --> 00:21:18.220
met her are amazing with her. But it's just not

00:21:18.220 --> 00:21:20.180
the same as your day -to -day, every day you

00:21:20.180 --> 00:21:22.740
wake up, you watch her on the monitor at night,

00:21:22.900 --> 00:21:24.579
like you hear a noise in the night and you don't

00:21:24.579 --> 00:21:27.119
think someone's getting in. It's, oh, is she

00:21:27.119 --> 00:21:29.039
okay? Has she caught her arm in the bed? Has

00:21:29.039 --> 00:21:31.579
a pillow landed on her face? Like, what is it?

00:21:31.599 --> 00:21:33.839
You're constantly in that kind of fight or flight

00:21:33.839 --> 00:21:37.359
mode all the time, which no one... around me

00:21:37.359 --> 00:21:39.240
at the time was experienced either so I think

00:21:39.240 --> 00:21:42.400
that was obviously different but I don't I don't

00:21:42.400 --> 00:21:44.519
know I'd never change anything I don't think

00:21:44.519 --> 00:21:47.660
at all but yeah just more access experience just

00:21:47.660 --> 00:21:49.720
more access just doing things together would

00:21:49.720 --> 00:21:52.380
have been so much nicer I think because obviously

00:21:52.380 --> 00:21:54.599
you're in that zone all the time of what do I

00:21:54.599 --> 00:21:57.400
do what's going on things can be stressful you'd

00:21:57.400 --> 00:22:00.000
hear horrible news from surgeons and you'd kind

00:22:00.000 --> 00:22:02.680
of just go um and I think because of that I grew

00:22:02.680 --> 00:22:04.880
up way too quickly and I was way too mature for

00:22:04.880 --> 00:22:07.000
my age. Yeah, that's one thing I've noticed actually

00:22:07.000 --> 00:22:11.880
with siblings. They adore their siblings. There's

00:22:11.880 --> 00:22:15.119
no question. They're so protective. But there

00:22:15.119 --> 00:22:19.660
is an aura of maturity around them and an aura

00:22:19.660 --> 00:22:23.200
of worries that other children their age don't

00:22:23.200 --> 00:22:26.039
have and responsibilities that other children

00:22:26.039 --> 00:22:27.839
their age don't have. So I think it's wonderful

00:22:27.839 --> 00:22:29.980
to hear that you had other children that you

00:22:29.980 --> 00:22:32.789
can relate to. Yeah, which is lovely. at your

00:22:32.789 --> 00:22:35.690
lodge that's also a huge benefit as well is that

00:22:35.690 --> 00:22:38.450
siblings can connect in that way so there's that

00:22:38.450 --> 00:22:42.750
understanding of that weight of that responsibility

00:22:42.750 --> 00:22:45.410
and their love of their sibling you know maybe

00:22:45.410 --> 00:22:47.549
other people don't understand what it's like

00:22:47.549 --> 00:22:51.230
to love and care for and be responsible for somebody

00:22:51.230 --> 00:22:55.690
at that age yeah and we found at Ladybug Lodge

00:22:55.690 --> 00:22:57.730
Session especially so we do different sessions

00:22:57.730 --> 00:22:59.769
depending on age and then we have a separate

00:22:59.769 --> 00:23:02.480
session for children with PMLD just because we

00:23:02.480 --> 00:23:04.180
can do so much more to cater for them and we

00:23:04.180 --> 00:23:05.660
can get specialist equipment out and whatnot

00:23:05.660 --> 00:23:08.440
and we had two families recently and one was

00:23:08.440 --> 00:23:10.740
a little girl with quite profound needs and another

00:23:10.740 --> 00:23:12.660
was an older boy with quite profound needs and

00:23:12.660 --> 00:23:14.579
they both came with a sibling of the same age

00:23:14.579 --> 00:23:16.680
and these two got on like an absolute house on

00:23:16.680 --> 00:23:18.799
fire from the second they walked in and at one

00:23:18.799 --> 00:23:20.740
point one of the mums called the boy back and

00:23:20.740 --> 00:23:22.960
said oh I need you to get some syringes out the

00:23:22.960 --> 00:23:24.619
car because I've left them in the car and I can't

00:23:24.619 --> 00:23:26.660
leave her on her own and he was like oh I'll

00:23:26.660 --> 00:23:28.420
be back in a minute I need to help my mum and

00:23:28.420 --> 00:23:30.960
the other sibling she went well I'm going to

00:23:30.960 --> 00:23:33.339
go and check in on my brother and they kind of

00:23:33.339 --> 00:23:35.759
then met back in the middle and the boy went

00:23:35.759 --> 00:23:37.819
oh I've got the syringe my mum like she's okay

00:23:37.819 --> 00:23:39.880
and the sister went yeah my brother's fine we

00:23:39.880 --> 00:23:42.299
can carry on playing now and then every 10 minutes

00:23:42.299 --> 00:23:43.759
they were just going should we go and check they're

00:23:43.759 --> 00:23:47.440
okay and In their mind, they were still, even

00:23:47.440 --> 00:23:50.160
though they were playing and having a water fight

00:23:50.160 --> 00:23:51.779
and decorating biscuits and doing all those fun

00:23:51.779 --> 00:23:54.380
things away from their siblings, they still had

00:23:54.380 --> 00:23:56.299
that monologue in the back of their mind going,

00:23:56.380 --> 00:23:58.640
are they okay? Does my mum need a hand? Do they

00:23:58.640 --> 00:24:00.519
need me to get anything? Has something happened

00:24:00.519 --> 00:24:02.160
where I've not been here? Like, do I need to

00:24:02.160 --> 00:24:04.380
go and help? But when one of them would say,

00:24:04.460 --> 00:24:06.079
I need to go and help, they're like, okay, if

00:24:06.079 --> 00:24:08.640
you need anything. And they were both only nine

00:24:08.640 --> 00:24:11.380
and they already had that kind of, well, if you

00:24:11.380 --> 00:24:13.079
need anything, I know I can probably help you

00:24:13.079 --> 00:24:16.049
because I understand. Whereas there was definitely

00:24:16.049 --> 00:24:18.869
children at my school when I was nine who wouldn't

00:24:18.869 --> 00:24:20.569
have understood that at all and would have been

00:24:20.569 --> 00:24:22.710
like, what do you mean you need to go and get

00:24:22.710 --> 00:24:24.150
a syringe from your mum? What are you getting

00:24:24.150 --> 00:24:26.630
that for? Like they just didn't have that kind

00:24:26.630 --> 00:24:28.809
of contextual awareness. Whereas those two especially,

00:24:28.950 --> 00:24:31.849
they understood each other's situation so much,

00:24:31.849 --> 00:24:34.730
even though on paper their siblings are completely

00:24:34.730 --> 00:24:37.410
different. But they knew the complexities of

00:24:37.410 --> 00:24:40.259
if mum needs a hand. I'm the best person to help

00:24:40.259 --> 00:24:42.099
her right now because we're not at home or dad's

00:24:42.099 --> 00:24:45.200
not here so I can help or whatever that was they

00:24:45.200 --> 00:24:48.019
were the second carer and they were both nine

00:24:48.019 --> 00:24:51.480
which is crazy because no nine -year -old has

00:24:51.480 --> 00:24:53.819
that pressure usually or that kind of intensity

00:24:53.819 --> 00:24:57.000
but they both took it on the chin and completely

00:24:57.000 --> 00:24:59.019
respected each other for doing it because they

00:24:59.019 --> 00:25:01.539
both understood whereas if they were at a soft

00:25:01.539 --> 00:25:04.380
play running around with other families those

00:25:04.380 --> 00:25:06.200
families might have They're like, well, what

00:25:06.200 --> 00:25:07.660
do you mean? I don't understand. And that's when

00:25:07.660 --> 00:25:09.839
the questions come, which can then be quite hard

00:25:09.839 --> 00:25:12.220
for siblings because you can explain it all you

00:25:12.220 --> 00:25:14.900
want, but people still don't completely understand.

00:25:15.200 --> 00:25:17.259
And so I think things like that are lovely because

00:25:17.259 --> 00:25:19.980
they wouldn't have that understanding elsewhere

00:25:19.980 --> 00:25:22.200
unless they access kind of young carer sessions

00:25:22.200 --> 00:25:24.680
or whatever that is. But again, even that is

00:25:24.680 --> 00:25:26.920
so few and far between. And you might not always

00:25:26.920 --> 00:25:29.359
be with families who are caring for a sibling.

00:25:29.440 --> 00:25:31.160
You might be with ones that care for a parent,

00:25:31.200 --> 00:25:33.319
a grandparent, or maybe their siblings needs.

00:25:33.819 --> 00:25:35.359
are completely different and actually you don't

00:25:35.359 --> 00:25:38.180
understand that level of need but for those two

00:25:38.180 --> 00:25:40.740
especially both having siblings with PMLD they

00:25:40.740 --> 00:25:43.319
both just were like yeah okay that makes sense

00:25:43.319 --> 00:25:45.740
I understand which is which is so nice for a

00:25:45.740 --> 00:25:47.140
nine -year -old but for them to then just go

00:25:47.140 --> 00:25:49.880
let's go back in the ball pit they can then kind

00:25:49.880 --> 00:25:52.119
of forget again and then go back to it but they

00:25:52.119 --> 00:25:54.200
both had that understanding each other so yeah

00:25:54.200 --> 00:25:56.240
it was really nice It must have been really wonderful

00:25:56.240 --> 00:25:58.599
for you to see that as well. And your inner child

00:25:58.599 --> 00:26:01.000
must have just been singing with joy. Honestly,

00:26:01.160 --> 00:26:03.140
it does. I think that's all I would have wanted.

00:26:03.400 --> 00:26:05.960
Yeah. Especially in moments like that where maybe

00:26:05.960 --> 00:26:08.180
something does go wrong or just to have that

00:26:08.180 --> 00:26:09.819
person that goes, oh, it's okay. I'll be here

00:26:09.819 --> 00:26:11.920
when you get back. But when you get back, they

00:26:11.920 --> 00:26:14.299
don't bombard you with questions. What happened?

00:26:14.359 --> 00:26:17.240
Are they okay? What's going on now? It was just,

00:26:17.279 --> 00:26:19.440
okay, well, are they okay? Yeah, they are. Okay,

00:26:19.500 --> 00:26:20.920
that's fine. Let's just carry on playing because

00:26:20.920 --> 00:26:23.559
they know deep down you will. say more if you

00:26:23.559 --> 00:26:25.640
feel you need to but as a sibling they also know

00:26:25.640 --> 00:26:27.720
I don't actually need to know I just want to

00:26:27.720 --> 00:26:30.660
give you that time so yeah it really does especially

00:26:30.660 --> 00:26:33.000
me I think because of my sister it really does

00:26:33.000 --> 00:26:35.259
make me feel yeah very warm inside when that

00:26:35.259 --> 00:26:37.839
happens but yeah those are the families as well

00:26:37.839 --> 00:26:40.460
the parents they appreciate that that actually

00:26:40.460 --> 00:26:42.319
the children they're playing with their siblings

00:26:42.319 --> 00:26:44.940
are playing with other siblings who completely

00:26:44.940 --> 00:26:47.480
get it as well and they've been not got that

00:26:47.480 --> 00:26:49.420
potential bias or judgment of oh why is your

00:26:49.420 --> 00:26:51.359
sibling acting like that they're not bothered

00:26:51.359 --> 00:26:54.900
at all so there's no kind of negative energy

00:26:54.900 --> 00:26:57.240
at all in that space it's just completely this

00:26:57.240 --> 00:26:59.559
is really nice they feel welcome here and safe

00:26:59.559 --> 00:27:02.059
but they know they can come back to us there's

00:27:02.059 --> 00:27:03.759
a lot of parents that listen to this podcast

00:27:03.759 --> 00:27:08.140
that hold a lot of guilt over the amount of time

00:27:08.140 --> 00:27:11.980
and energy that they need to spend with their

00:27:11.980 --> 00:27:16.809
disabled child in comparison to their non -disabled

00:27:16.809 --> 00:27:19.849
child what would you say to the parents that

00:27:19.849 --> 00:27:22.750
are feeling that way? I think that is really

00:27:22.750 --> 00:27:25.769
really hard because as a parent obviously you

00:27:25.769 --> 00:27:28.349
want what's best for all your children but obviously

00:27:28.349 --> 00:27:30.109
children with complex care needs whatever that

00:27:30.109 --> 00:27:33.710
is you just can't do that you can't split yourself

00:27:33.710 --> 00:27:35.470
in two and say you will have this part of me

00:27:35.470 --> 00:27:37.329
forever and you will have this part of me and

00:27:37.329 --> 00:27:39.210
I think my mum found that really hard because

00:27:39.210 --> 00:27:42.630
I was late diagnosed with ADHD at 17 and I think

00:27:42.630 --> 00:27:44.410
maybe if my sister didn't have the need she did.

00:27:44.799 --> 00:27:46.920
they would have realised that a lot sooner. But

00:27:46.920 --> 00:27:49.000
I also think every professional ever just went,

00:27:49.079 --> 00:27:50.920
oh, she's a carer, it's fine. We'll just tarnish

00:27:50.920 --> 00:27:53.740
her with that brush. And actually me having that

00:27:53.740 --> 00:27:56.900
kind of discovery at 17 was massive. And I know

00:27:56.900 --> 00:27:59.339
my mum felt guilt for that, but she couldn't

00:27:59.339 --> 00:28:01.140
have done anything because if she didn't care

00:28:01.140 --> 00:28:03.400
for my sister the way she has, she wouldn't be

00:28:03.400 --> 00:28:05.299
the person she is or my sister wouldn't have

00:28:05.299 --> 00:28:07.420
developed as well as she has. And yeah, I know

00:28:07.420 --> 00:28:09.799
she probably does feel guilty, but I wouldn't

00:28:09.799 --> 00:28:11.740
have wanted her to give me more if it was going

00:28:11.740 --> 00:28:13.599
to give her less. And I think every sibling.

00:28:14.250 --> 00:28:15.910
probably does have moments where they go oh I

00:28:15.910 --> 00:28:17.990
wish my mum could help me right now or I really

00:28:17.990 --> 00:28:19.869
can't do my homework but she's too busy showering

00:28:19.869 --> 00:28:21.430
my sibling which is going to take two hours or

00:28:21.430 --> 00:28:23.230
whatever that is and there are definitely times

00:28:23.230 --> 00:28:26.430
where you will have that and it is hard but I

00:28:26.430 --> 00:28:28.450
think as a sibling deep down you always know

00:28:28.450 --> 00:28:30.710
they're not doing that because they love you

00:28:30.710 --> 00:28:32.609
less or they haven't got time for you whatever

00:28:32.609 --> 00:28:35.750
that is it is just a matter of they need me more

00:28:35.750 --> 00:28:38.049
right now and that's fine because you will always

00:28:38.049 --> 00:28:40.809
get the time back and I found as I've got older

00:28:41.769 --> 00:28:43.529
if I had a teacher training day and my sister

00:28:43.529 --> 00:28:45.910
didn't that is such like an us day and my mum

00:28:45.910 --> 00:28:47.789
really does make that time we will do as much

00:28:47.789 --> 00:28:50.809
as we can together and it is just finding those

00:28:50.809 --> 00:28:52.970
kind of little pockets of time which I think

00:28:52.970 --> 00:28:55.230
are so important it doesn't need to be every

00:28:55.230 --> 00:28:57.730
day you feel you need to give that back that

00:28:57.730 --> 00:29:00.190
time back to your neurotypical siblings whatever

00:29:00.190 --> 00:29:03.009
that is it's just making them feel special in

00:29:03.009 --> 00:29:05.470
certain moments is really important I think like

00:29:05.470 --> 00:29:07.730
things like my mum showing up at school to an

00:29:07.730 --> 00:29:09.930
awards night meant far more than her sitting

00:29:09.930 --> 00:29:11.849
and doing the homework with me because I knew

00:29:11.849 --> 00:29:13.470
she'd gone to the effort of getting someone to

00:29:13.470 --> 00:29:16.130
look after my sister or making arrangements or

00:29:16.130 --> 00:29:18.569
whatever that was she tried really hard so you

00:29:18.569 --> 00:29:20.589
know in the back of your mind she's not just

00:29:20.589 --> 00:29:22.529
gone yeah I'll come tonight that actually all

00:29:22.529 --> 00:29:24.289
the planning and time she's put into that that

00:29:24.289 --> 00:29:27.059
is the love they have for you it's not If they

00:29:27.059 --> 00:29:29.119
can't show it all the time, it's the things they

00:29:29.119 --> 00:29:30.839
do for you in different ways. Like my mum would

00:29:30.839 --> 00:29:32.539
always leave me a note in my lunchbox throughout

00:29:32.539 --> 00:29:34.519
the whole of primary school. And knowing that

00:29:34.519 --> 00:29:37.039
she took that time in the morning just to try

00:29:37.039 --> 00:29:38.839
and pick me up throughout the day, potentially,

00:29:38.839 --> 00:29:41.779
when she knows that she might have been an optician's

00:29:41.779 --> 00:29:42.940
appointment. She could have been anywhere at

00:29:42.940 --> 00:29:45.460
that point in the day, but it was a little, I'm

00:29:45.460 --> 00:29:47.059
still thinking about you, even though I'm probably

00:29:47.059 --> 00:29:48.519
not with you right now because I'm looking after

00:29:48.519 --> 00:29:50.799
your sister. It was little things like that that

00:29:50.799 --> 00:29:53.670
kind of mean the most. and even now she'll do

00:29:53.670 --> 00:29:55.230
little things like she'll send me a little text

00:29:55.230 --> 00:29:57.029
like we're at the hospital with like a nice picture

00:29:57.029 --> 00:29:59.150
of my sister whatever but it would always be

00:29:59.150 --> 00:30:01.210
wish you were here we miss you today like i hope

00:30:01.210 --> 00:30:02.769
this is going well and it's just those little

00:30:02.769 --> 00:30:05.849
things that kind of tick you over and you don't

00:30:05.849 --> 00:30:08.569
then need all that time but i know parents feel

00:30:08.569 --> 00:30:10.509
guilt so many parents say it to us all the time

00:30:10.509 --> 00:30:12.789
that they wish they could split themselves into

00:30:12.789 --> 00:30:16.089
500 and make sure that their neurotypical child

00:30:16.089 --> 00:30:18.009
had all that time dedicated to them but it's

00:30:18.009 --> 00:30:20.529
just impossible i think i don't know if there's

00:30:20.529 --> 00:30:24.710
any any fix anyway but I think my mum also made

00:30:24.710 --> 00:30:27.430
it really important that I had of adults that

00:30:27.430 --> 00:30:29.089
I had really good relationships with or that

00:30:29.089 --> 00:30:31.170
I had friends that I had really good relationships

00:30:31.170 --> 00:30:32.829
with so if something did go wrong with my sister

00:30:32.829 --> 00:30:35.029
it was should we ring them do you want to go

00:30:35.029 --> 00:30:37.509
to them and kind of having that choice of okay

00:30:37.509 --> 00:30:39.849
this is going wrong we're going into hospital

00:30:39.849 --> 00:30:41.710
the ambulance is here do you want to go and stay

00:30:41.710 --> 00:30:43.529
with your dad do you want to go and stay with

00:30:43.529 --> 00:30:44.910
your auntie do you want to do you want me to

00:30:44.910 --> 00:30:46.549
phone a friend's mum where would you like to

00:30:46.549 --> 00:30:49.049
go and kind of giving you that autonomy that

00:30:49.049 --> 00:30:51.069
you don't need to be in this situation if it's

00:30:51.069 --> 00:30:53.250
too much for you right now and I think that was

00:30:53.250 --> 00:30:55.390
especially important for me during kind of my

00:30:55.390 --> 00:30:58.630
GCSEs and my A -levels that actually you are

00:30:58.630 --> 00:31:00.309
really important right now and if something is

00:31:00.309 --> 00:31:02.789
going wrong or we need to make a plan or something

00:31:02.789 --> 00:31:05.250
changes that doesn't make you less important

00:31:05.250 --> 00:31:06.930
because the things you are doing are really key

00:31:06.930 --> 00:31:09.150
so that was nice it was always kind of like a

00:31:09.150 --> 00:31:12.170
bit of a backup plan of we can do this to make

00:31:12.170 --> 00:31:14.670
sure you're still just as important and looked

00:31:14.670 --> 00:31:16.930
after and whatever that is right now. even if

00:31:16.930 --> 00:31:19.650
my attention is slightly moved away. But she

00:31:19.650 --> 00:31:21.650
always made up for that time. And I think that's

00:31:21.650 --> 00:31:24.450
the hard bit. Do you have time to make up for

00:31:24.450 --> 00:31:26.349
that time? But there is always little ways, I

00:31:26.349 --> 00:31:28.170
think. So it doesn't need to be equal time, does

00:31:28.170 --> 00:31:31.309
it? No, not at all. Equital time, if that's a

00:31:31.309 --> 00:31:34.609
word. It can be equal in energy rather than equal

00:31:34.609 --> 00:31:37.049
in actual time, can't it? Or equal in thought.

00:31:37.960 --> 00:31:39.619
like you said with your notes i mean that might

00:31:39.619 --> 00:31:41.400
have taken a couple of seconds to write but that's

00:31:41.400 --> 00:31:44.859
not the point yeah the point is that she's taking

00:31:44.859 --> 00:31:47.940
the time and energy and thought and making it

00:31:47.940 --> 00:31:51.140
really meaningful so it's a rich experience rather

00:31:51.140 --> 00:31:55.799
than a lengthy experience what about for teachers

00:31:55.799 --> 00:32:00.920
if they have in their class um a disabled child

00:32:00.920 --> 00:32:04.359
in their class how could a teacher better support

00:32:04.359 --> 00:32:08.890
them is there any ways so I think in primary

00:32:08.890 --> 00:32:10.529
school it's quite hard because obviously you're

00:32:10.529 --> 00:32:13.450
quite young and sometimes some parents obviously

00:32:13.450 --> 00:32:15.769
don't tell families like their other children

00:32:15.769 --> 00:32:17.910
everything but then some siblings by default

00:32:17.910 --> 00:32:19.569
will know everything depending on how involved

00:32:19.569 --> 00:32:22.109
they are with their care but I think just regular

00:32:22.109 --> 00:32:23.809
kind of checking opportunities were always nice

00:32:23.809 --> 00:32:26.369
for me and I always remember my year seven form

00:32:26.369 --> 00:32:28.549
tutor every Friday he'd say how's your sister

00:32:28.549 --> 00:32:31.390
been this week and then I'd kind of say oh she's

00:32:31.390 --> 00:32:32.470
done this she's done that and then you go but

00:32:32.470 --> 00:32:34.609
how have you been and he'd always make sure he

00:32:34.609 --> 00:32:36.309
followed up with that question afterwards and

00:32:36.309 --> 00:32:38.269
if I kind of said oh yeah like it's been a bit

00:32:38.269 --> 00:32:39.829
of a busy week he'd be like well is there anything

00:32:39.829 --> 00:32:42.730
I can do and even though there wasn't a lot of

00:32:42.730 --> 00:32:45.049
the time knowing that every Friday he'd just

00:32:45.049 --> 00:32:47.730
go oh how was how's your sister been how's how's

00:32:47.730 --> 00:32:49.630
home this week like have you got everything done

00:32:49.630 --> 00:32:52.990
anything going on and I think at like big times

00:32:52.990 --> 00:32:54.809
when I don't know we were having the lift fitted

00:32:54.809 --> 00:32:59.710
and the house was maybe we were getting a new

00:32:59.710 --> 00:33:01.069
wheelchair and we didn't know if she's gonna

00:33:01.069 --> 00:33:03.029
be comfortable all those things because you a

00:33:03.029 --> 00:33:05.509
lot of the time at home have a lot of professionals

00:33:05.509 --> 00:33:07.829
in your house have a lot of people changing things

00:33:07.829 --> 00:33:10.150
that you don't have a lot of say in we don't

00:33:10.150 --> 00:33:12.650
our family bathroom is for my sister i i can't

00:33:12.650 --> 00:33:14.789
have a bath anymore because that is completely

00:33:14.789 --> 00:33:18.329
changed for her it was nice in those times when

00:33:18.329 --> 00:33:20.509
he would ask oh how's things been like oh well

00:33:20.509 --> 00:33:22.109
we've lost the bath this week because we've now

00:33:22.109 --> 00:33:24.930
had to have a wet room he'd kind of always try

00:33:24.930 --> 00:33:28.200
and make a way to make that situation a bit better

00:33:28.200 --> 00:33:29.740
like things like oh make sure you always book

00:33:29.740 --> 00:33:32.200
a holiday with a bath and it was like as much

00:33:32.200 --> 00:33:34.059
as he couldn't physically do anything about that

00:33:34.059 --> 00:33:36.400
situation he always kind of turned it around

00:33:36.400 --> 00:33:38.180
to make it like oh that's not the end of the

00:33:38.180 --> 00:33:40.579
world though there is always another option and

00:33:40.579 --> 00:33:42.380
which I think was really nice just to kind of

00:33:42.380 --> 00:33:44.579
because I feel like as a sibling sometimes you

00:33:44.579 --> 00:33:46.640
can have quite tunnel vision of oh that's just

00:33:46.640 --> 00:33:48.539
been done for my sister I can't have that anymore

00:33:48.539 --> 00:33:50.799
we've lost this we don't have this space in the

00:33:50.799 --> 00:33:52.259
garden anymore because they've put her ramp in

00:33:52.259 --> 00:33:54.700
whatever that is but it was nice for someone

00:33:54.700 --> 00:33:57.940
to kind of find the light in that and go actually

00:33:57.940 --> 00:34:00.079
no well if you don't have a trampoline at home

00:34:00.079 --> 00:34:02.279
make sure you say in PE I really want to go on

00:34:02.279 --> 00:34:03.940
the trampoline because you can't do that anymore

00:34:03.940 --> 00:34:06.880
at home and just finding those ways but I think

00:34:06.880 --> 00:34:09.039
as I got older and I had kind of like crucial

00:34:09.039 --> 00:34:12.119
education moments at my GCSEs and A -levels especially

00:34:12.119 --> 00:34:14.159
before my GCSEs because my sister had been quite

00:34:14.159 --> 00:34:17.400
poorly at the time um I asked my year head to

00:34:17.400 --> 00:34:18.960
sit down with me and make a plan because I said

00:34:18.960 --> 00:34:21.059
if something goes wrong I want to know straight

00:34:21.059 --> 00:34:24.409
away but I want I don't want it to impact my

00:34:24.409 --> 00:34:26.650
performance either because I was very much I

00:34:26.650 --> 00:34:27.889
want to get these grades I want to be able to

00:34:27.889 --> 00:34:29.969
do the best I can but I was still worried at

00:34:29.969 --> 00:34:31.670
the same time and it did happen in one of my

00:34:31.670 --> 00:34:33.809
exams that she got rushed to the hospital and

00:34:33.809 --> 00:34:35.750
we made a really good plan of please come in

00:34:35.750 --> 00:34:38.409
ask the exam invigilator how far do you think

00:34:38.409 --> 00:34:40.630
she's got left can you just subtly walk past

00:34:40.630 --> 00:34:43.030
see what page she's on see what that is and if

00:34:43.030 --> 00:34:45.869
you think she looks done or she's done that's

00:34:45.869 --> 00:34:47.880
when one of us will come in and just say oh We

00:34:47.880 --> 00:34:49.900
think we need you now. Can you pop out? So it

00:34:49.900 --> 00:34:52.820
wasn't this major disruption, major panic. It

00:34:52.820 --> 00:34:55.480
was actually handled in a really nice way that

00:34:55.480 --> 00:34:57.420
I then also didn't feel like everyone was looking

00:34:57.420 --> 00:34:59.639
at me and thinking, oh, there she goes again.

00:34:59.800 --> 00:35:00.840
Like something's happened with my sister. Off

00:35:00.840 --> 00:35:03.260
she goes. But they actually made that accommodation

00:35:03.260 --> 00:35:06.099
on my terms, which made me feel so much more

00:35:06.099 --> 00:35:08.460
comfortable. But even things like at secondary

00:35:08.460 --> 00:35:10.699
school, especially, we weren't allowed phones

00:35:10.699 --> 00:35:12.800
at all. It was a complete ban at my school, which

00:35:12.800 --> 00:35:15.900
was completely fine. I was allowed my mum to

00:35:15.900 --> 00:35:18.599
text me. So my mum was allowed to be not undue,

00:35:18.639 --> 00:35:20.940
not disturbed. And if she texts, no matter what

00:35:20.940 --> 00:35:22.400
classroom I was in, no matter where I was, I

00:35:22.400 --> 00:35:23.739
was allowed to take my phone out and check it

00:35:23.739 --> 00:35:25.780
just in case something had gone wrong. And it

00:35:25.780 --> 00:35:27.440
happened once that I did have to take my phone

00:35:27.440 --> 00:35:29.960
out in the corridor. And it was quite funny that

00:35:29.960 --> 00:35:31.940
a teacher that I didn't know, put your phone

00:35:31.940 --> 00:35:33.519
away. And one of my friends straight with him,

00:35:33.579 --> 00:35:34.960
I'm like, no, something's wrong with her sister.

00:35:35.019 --> 00:35:37.480
She's allowed to. And he immediately kind of

00:35:37.480 --> 00:35:39.639
checked himself and was like, oh, I'm so sorry.

00:35:39.920 --> 00:35:42.179
I didn't realise. And my school then worked really

00:35:42.179 --> 00:35:45.119
hard to kind of. make sure that those who needed

00:35:45.119 --> 00:35:47.599
that were kind of protected by any members of

00:35:47.599 --> 00:35:48.860
staff who were walking around the school and

00:35:48.860 --> 00:35:50.900
that it wasn't they weren't so quick to judge

00:35:50.900 --> 00:35:52.679
they kind of gave you that time to actually go

00:35:52.679 --> 00:35:55.280
oh no actually I'm trying and you don't want

00:35:55.280 --> 00:35:57.519
to be fumbling around and looking silly but they

00:35:57.519 --> 00:36:00.000
kind of didn't make you feel that in that situation

00:36:00.000 --> 00:36:02.179
which was really nice but I do think for teachers

00:36:02.179 --> 00:36:05.500
as well sometimes school is a happier place than

00:36:05.500 --> 00:36:07.320
home because of everything that goes on so they

00:36:07.320 --> 00:36:09.989
really need to make sure they're fostering that

00:36:09.989 --> 00:36:12.530
environment no matter what it was I loved PE

00:36:12.530 --> 00:36:15.190
and every PE teacher I ever had said do you want

00:36:15.190 --> 00:36:16.489
to stay after school tonight and do this we've

00:36:16.489 --> 00:36:18.389
got this on we've got this on just because those

00:36:18.389 --> 00:36:21.269
extra 45 minutes of playing netball playing badminton

00:36:21.269 --> 00:36:24.010
I didn't care what it was it was something fun

00:36:24.010 --> 00:36:26.650
to do before potentially going home for three

00:36:26.650 --> 00:36:29.510
hours and cooking dinner and feeding my sister

00:36:29.510 --> 00:36:31.210
or changing her bed or doing all those things

00:36:31.210 --> 00:36:35.159
it was that tiny bit of extra time just to be

00:36:35.159 --> 00:36:37.820
me yeah and not be worrying about it yeah but

00:36:37.820 --> 00:36:40.820
I think they often forget that you are still

00:36:40.820 --> 00:36:43.139
a child and you are still you should still be

00:36:43.139 --> 00:36:45.260
the way everyone else in your class is but a

00:36:45.260 --> 00:36:46.940
lot of the time you've kind of got your adult

00:36:46.940 --> 00:36:49.460
hat on which you've kind of been given way too

00:36:49.460 --> 00:36:53.039
early or adopted way too early um and just giving

00:36:53.039 --> 00:36:55.679
time for those opportunities that were so important

00:36:55.679 --> 00:36:57.699
and there's lots of things I did with school

00:36:57.699 --> 00:36:59.619
that I wouldn't have had the opportunity to do

00:36:59.619 --> 00:37:01.659
with my sister because we maybe couldn't go on

00:37:01.659 --> 00:37:03.820
a day out there or we couldn't go on a trip there

00:37:04.269 --> 00:37:05.949
but actually when i was at school i could because

00:37:05.949 --> 00:37:07.690
i didn't have to worry about my sister but it

00:37:07.690 --> 00:37:10.869
was also a time for me just to have fun because

00:37:10.869 --> 00:37:12.989
i wasn't having to think about it but obviously

00:37:12.989 --> 00:37:16.309
it is hard because they yeah education is very

00:37:16.309 --> 00:37:19.630
education heavy um i'm even working in schools

00:37:19.630 --> 00:37:21.590
i know what that climate is like for teachers

00:37:21.590 --> 00:37:23.269
and it's so difficult for them to juggle but

00:37:23.659 --> 00:37:26.179
I do think it is quite noticeable who the young

00:37:26.179 --> 00:37:28.519
carers are kind of in a class. But we even had

00:37:28.519 --> 00:37:30.719
a young carer support worker come in once a month

00:37:30.719 --> 00:37:32.280
and they'd just get us all together and be like,

00:37:32.360 --> 00:37:34.280
do you guys know each other here? Like, did you

00:37:34.280 --> 00:37:36.460
actually know? And that was nice then because

00:37:36.460 --> 00:37:37.619
then if you saw each other on the playground,

00:37:37.760 --> 00:37:39.519
you'd give each other that like, oh, hi, like,

00:37:39.519 --> 00:37:42.000
I know you're in a similar situation to me kind

00:37:42.000 --> 00:37:44.179
of nod, but you didn't have to say anything.

00:37:44.280 --> 00:37:46.179
But then there were times that it was nice too.

00:37:46.900 --> 00:37:49.199
So I think even that in itself, just talking

00:37:49.199 --> 00:37:51.400
about what young carers do, bringing that awareness

00:37:51.400 --> 00:37:54.500
into schools. um helps everyone not just the

00:37:54.500 --> 00:37:56.760
teachers but the 200 other people in your year

00:37:56.760 --> 00:37:58.559
group they're kind of going oh okay that makes

00:37:58.559 --> 00:38:00.960
sense as to why she does that or why she sometimes

00:38:00.960 --> 00:38:02.940
has to go home early because a lot of people

00:38:02.940 --> 00:38:05.179
just didn't understand but if there was a bit

00:38:05.179 --> 00:38:09.179
more school -wide education on it then maybe

00:38:09.179 --> 00:38:11.300
pupils and the teachers and other support staff

00:38:11.300 --> 00:38:13.360
are in school would go okay that makes a lot

00:38:13.360 --> 00:38:16.079
of sense um but yeah i mean there's masses they

00:38:16.079 --> 00:38:18.179
could do it's just it's very school specific

00:38:18.179 --> 00:38:21.030
that's the problem It sounds amazing. And that's

00:38:21.030 --> 00:38:23.010
such great advice. You're full of so much wisdom.

00:38:23.010 --> 00:38:25.409
And I feel like lots of teachers and parents

00:38:25.409 --> 00:38:28.010
are like, oh, listen to this. And I've taken

00:38:28.010 --> 00:38:30.809
lots from it. What are your hopes for Ladybug

00:38:30.809 --> 00:38:33.190
Lodge? You sound like you're doing so well already.

00:38:33.570 --> 00:38:36.969
What's the dream? The dream is to have a lodge.

00:38:37.110 --> 00:38:40.889
Definitely have a lodge. Yeah, it's all down

00:38:40.889 --> 00:38:44.050
to, I blame it that we went on a trip with my,

00:38:44.090 --> 00:38:46.780
so my sister has. a regenerative condition and

00:38:46.780 --> 00:38:49.119
they do they've got a Facebook group and families

00:38:49.119 --> 00:38:50.840
across the UK will meet up every now and then

00:38:50.840 --> 00:38:53.659
and I think I was only probably 11 or 12 at the

00:38:53.659 --> 00:38:56.780
time and we went to a place in Maidenstone called

00:38:56.780 --> 00:39:00.019
Thames Valley Adventure Playground and we turned

00:39:00.019 --> 00:39:02.239
up and I literally my jaw was on the floor and

00:39:02.239 --> 00:39:04.119
I said to my mum why do we not have this here

00:39:04.119 --> 00:39:06.119
why do we not have this at home why have we drove

00:39:06.119 --> 00:39:08.719
two and a half hours to come here and we walked

00:39:08.719 --> 00:39:11.389
in and everyone was literally the nicest person

00:39:11.389 --> 00:39:14.010
I've ever met ever and my sister could go on

00:39:14.010 --> 00:39:16.090
the swing on the roundabout they had a zip wire

00:39:16.090 --> 00:39:18.630
they had a two -story wooden castle and she could

00:39:18.630 --> 00:39:20.409
go up on the second story and I was literally

00:39:20.409 --> 00:39:23.250
mind blown but then you went inside and there

00:39:23.250 --> 00:39:24.769
was soft play and there was a hoist in there

00:39:24.769 --> 00:39:25.989
and there was a sensory room and there was a

00:39:25.989 --> 00:39:28.389
music room and there was all these things I was

00:39:28.389 --> 00:39:31.530
literally going wow why why is there not send

00:39:31.530 --> 00:39:33.730
community centers where they're like this and

00:39:33.730 --> 00:39:35.349
why they're not something nearest like this why

00:39:35.349 --> 00:39:37.920
have we driven so far And then as we learned

00:39:37.920 --> 00:39:40.280
about there, we looked at other places and typically

00:39:40.280 --> 00:39:42.539
they were always an hour, an hour and a half,

00:39:42.599 --> 00:39:44.559
two hours, whatever. But over time, we've slowly

00:39:44.559 --> 00:39:47.320
kind of gone to places and every single time

00:39:47.320 --> 00:39:48.820
I just go, I just want to bring this back home.

00:39:48.880 --> 00:39:50.820
I just want to pick the whole building up, crane

00:39:50.820 --> 00:39:53.380
it to Coventry and drop it down and help all

00:39:53.380 --> 00:39:55.139
the families that are in Coventry, Warwickshire,

00:39:55.219 --> 00:39:57.579
whatever the surrounding area is. to have somewhere.

00:39:57.780 --> 00:40:00.760
So yeah, our goal is to have a lodge 100 % with

00:40:00.760 --> 00:40:02.980
a swimming pool that isn't just open at eight

00:40:02.980 --> 00:40:04.719
o 'clock on a Sunday night to send children.

00:40:05.000 --> 00:40:07.900
Have a soft play, have a sensory room, have all

00:40:07.900 --> 00:40:10.719
those places that you can't just go to because

00:40:10.719 --> 00:40:12.940
usually they're in a school and the school closes

00:40:12.940 --> 00:40:15.079
and that's it. You can't access it in the holidays.

00:40:15.360 --> 00:40:18.900
But having somewhere that is open just all the

00:40:18.900 --> 00:40:20.800
time. So families who haven't got a preschool

00:40:20.800 --> 00:40:23.420
place can come in the week and they can play

00:40:23.420 --> 00:40:25.989
and they can meet. professionals and we always

00:40:25.989 --> 00:40:28.349
say it's so important to get local professionals

00:40:28.349 --> 00:40:30.869
in the local la and whatever that is the nursing

00:40:30.869 --> 00:40:33.929
team portage whoever they are get them in but

00:40:33.929 --> 00:40:36.670
in a setting that's not intrusive not feeling

00:40:36.670 --> 00:40:38.530
like you've constantly got 100 professionals

00:40:38.530 --> 00:40:40.829
in your house actually no come and meet there

00:40:40.829 --> 00:40:43.030
that can be the place parents can have a nice

00:40:43.030 --> 00:40:46.090
chat with a professional get some advice or fill

00:40:46.090 --> 00:40:48.010
out a grant application form or whatever that

00:40:48.010 --> 00:40:50.769
is borrow equipment meet other parents and then

00:40:50.769 --> 00:40:53.550
not worrying can my child get out can they do

00:40:53.550 --> 00:40:55.989
this can they climb that is that safe is it all

00:40:55.989 --> 00:40:58.550
adapted actually are we going to turn up to somewhere

00:40:58.550 --> 00:41:01.210
today where they can access everything just those

00:41:01.210 --> 00:41:04.769
little things the basic needs really um of a

00:41:04.769 --> 00:41:07.449
community centre is the absolute dream it sounds

00:41:07.449 --> 00:41:11.090
like a wonderful dream and I totally believe

00:41:11.090 --> 00:41:13.650
that you're gonna make it happen I totally do

00:41:13.650 --> 00:41:16.269
if people are listening from the local Coventry

00:41:16.269 --> 00:41:19.550
area how do they find you and and how do they

00:41:20.090 --> 00:41:22.630
join yeah no of course so we're on instagram

00:41:22.630 --> 00:41:25.369
facebook and linkedin always under kind of ladybug

00:41:25.369 --> 00:41:28.070
lodge there might be scnd stuck on the end sometimes

00:41:28.070 --> 00:41:29.809
if we didn't get the name in time and but then

00:41:29.809 --> 00:41:33.050
our website is just www .ladybuglodge .co .uk

00:41:33.050 --> 00:41:35.610
we have so many activities especially in the

00:41:35.610 --> 00:41:38.019
holidays even if you don't live in Coventry or

00:41:38.019 --> 00:41:39.780
Warwickshire we always say we'll take you as

00:41:39.780 --> 00:41:41.940
far as you come we've got a very incredible boy

00:41:41.940 --> 00:41:44.019
who comes down from Nottingham I think he's travelled

00:41:44.019 --> 00:41:47.340
like over a thousand miles in total to come to

00:41:47.340 --> 00:41:49.679
us in the half terms and yeah if you want to

00:41:49.679 --> 00:41:52.420
come book on we always do a booking system because

00:41:52.420 --> 00:41:54.719
yeah we hate when it's busy kids hate when it's

00:41:54.719 --> 00:41:58.019
busy um but we do all sorts special special things

00:41:58.019 --> 00:42:00.179
like Santa's Grotto come and meet Father Christmas

00:42:00.179 --> 00:42:03.559
privately as a family and actually don't take

00:42:03.559 --> 00:42:05.199
home a rubbish toy that your child's not gonna

00:42:05.199 --> 00:42:07.260
be interested in take a selection of fidget toys

00:42:07.260 --> 00:42:09.960
take something that is important to you um but

00:42:09.960 --> 00:42:12.500
yeah please families get involved we always say

00:42:12.500 --> 00:42:14.780
it's lovely for people to come for the first

00:42:14.780 --> 00:42:16.760
time because they always look so nervous and

00:42:16.760 --> 00:42:19.619
then Five weeks later, we've seen them 20 times

00:42:19.619 --> 00:42:21.769
in that time because they... always say they

00:42:21.769 --> 00:42:23.590
feel like home or they don't feel that they're

00:42:23.590 --> 00:42:26.250
judged which i think is so important come coming

00:42:26.250 --> 00:42:28.110
to lady because you shouldn't feel judged you

00:42:28.110 --> 00:42:30.489
should never feel out of place it's just somewhere

00:42:30.489 --> 00:42:32.670
that your child can be whoever they want to be

00:42:32.670 --> 00:42:34.570
but also as a parent if you want to sit down

00:42:34.570 --> 00:42:37.170
and have a cup of tea and actually not run around

00:42:37.170 --> 00:42:39.030
in soft play because you want to keep an eye

00:42:39.030 --> 00:42:41.289
on them it's fine to just sit there because all

00:42:41.289 --> 00:42:43.570
the parents going oh yeah my son does that too

00:42:43.570 --> 00:42:45.670
oh yeah i was awake at 4am too i'm shattered

00:42:45.670 --> 00:42:48.210
i'd love a coffee it's nice in that sense that

00:42:48.210 --> 00:42:50.500
it's not just for your son child it's not just

00:42:50.500 --> 00:42:52.019
for you as a parent it's not just for your sibling

00:42:52.019 --> 00:42:54.519
it is for all of you and everyone that works

00:42:54.519 --> 00:42:56.900
there volunteers there whatever it is they all

00:42:56.900 --> 00:42:58.920
get it be it lived experience professional experience

00:42:58.920 --> 00:43:01.920
be it themselves or neurodiverse whatever that

00:43:01.920 --> 00:43:05.000
is um but yeah anyone that's anywhere in the

00:43:05.000 --> 00:43:07.239
uk come and get involved um but we're always

00:43:07.239 --> 00:43:09.300
sharing other stuff as well that's happening

00:43:09.300 --> 00:43:11.460
in Coventry Warwickshire there's lots of other

00:43:11.460 --> 00:43:13.599
kind of hubs like this across the uk that we

00:43:13.599 --> 00:43:16.119
always are talking about um so yeah even just

00:43:16.119 --> 00:43:17.800
follow us for information really because we're

00:43:17.800 --> 00:43:19.840
always sharing bits and bobs that's really important

00:43:19.840 --> 00:43:21.860
but if you're not one of those and you're a business

00:43:21.860 --> 00:43:23.400
or you're someone looking to be more inclusive

00:43:23.400 --> 00:43:25.840
just have a look at what we do get in contact

00:43:25.840 --> 00:43:27.920
with us there's loads of things that we can share

00:43:27.920 --> 00:43:30.699
resources charities that we know that are kind

00:43:30.699 --> 00:43:33.360
of paving the way to make things either fully

00:43:33.360 --> 00:43:35.880
accessible for families with pmld or actually

00:43:35.880 --> 00:43:38.519
include siblings and parents as well um so yeah

00:43:38.519 --> 00:43:40.860
just for any reason really give us a follow i

00:43:40.860 --> 00:43:43.380
guess absolutely reach out thank you so much

00:43:43.380 --> 00:43:45.219
for joining me josie it's in such an important

00:43:45.219 --> 00:43:47.619
conversation i'm sure teachers and parents and

00:43:47.619 --> 00:43:49.519
siblings alike will get a lot out of this so

00:43:49.519 --> 00:43:51.119
thank you so much for joining me i really appreciate

00:43:51.119 --> 00:43:51.639
it