Peeps in a Podcast: Meet Georgia

We're so pleased to welcome a very special guest, Georgia, to our podcast. Georgia has first hand experience of H. I. E. as she had an H. I. E. event herself at birth almost 30 years ago.

Georgia shares what life is like and the great work she does. 

Transcript

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Andrea 0:02

Hello everyone and welcome to Peeps in a Podcast. I'm very excited today to have a very special guest, Georgia Hamer, who is actually our first podcast guest with first hand experience of H. I. E. As she had an H. I. E. event herself at birth almost 30 years ago. So welcome, Georgia. Great to have you here.

Georgia 0:24

Hello.

Andrea 0:26

And we're actually recording this as a video as well at Georgia's request. So it's great to have you on screen as well.

Georgia 0:32

Hello. Thank you. If I, I'm not looking at the screen, it's because I can't. Basically, focus on the screen due to my eyesight, but we'll cover that in the podcast.

Andrea 0:46

No problem, no problem at all. It's really great that you're willing and happy to come and talk to us about your life and your experiences after your H.I.E. Event. But before we get started, tell us a bit more about you Georgia.

Georgia 1:01

Hi so I'm nearly. 30 and I was born in June of 94 and I had a H.I.E. Event because I was perfectly full term when I was inside my mum, but something happened and we're not entirely sure why. But it has left me with Periventricular Malaysia, or PVL for because no one can see that mouth every time. Which basically means that I had water on my brain when I was in Utero, and the water disappeared. No one's entirely sure why, but. It left me with quadriplegic spastic athetoid cerebral palsy. Say that three times fast! That's impossible. But yeah. So basically, I'm unable to move any parts of my body basically. Except my hand on my right side.

Andrea 2:12

Okay, and thanks for sharing that. I know that you do some really interesting things like working on radio. What's life like for you right now? Life is constantly busy. I have carers Eight til four, five days a week Monday through Friday, and I live with my parents still, but because social services circumstances just makes it easier for me to live here because I have fairly complex needs due to my H.I.E. Event. But, so yeah. But we're constantly busy. I do things like this. I have my own radio show. I, on a disability station. I I go to artwork, I deliver talks to university people. I do a lot basically. Wow. That sounds, that sounds amazing. How, how did you start doing your radio show? What, what kind of radio show do you run? Radio? I run it, I run something called the Random Show. bi weekly, which is basically me being able to be random on the air and having like lots of weird and wonderful conversations and stuff. And I run it because I went to a like day center servicing for people, for children and adults with disabilities. It's fairly similar to What you would see in like, aged care, but for people with additional needs, like, and they, so I started there when I was eight, and I've had them throughout my life, pretty much so, yeah, and now I, I'm one of the presenters on, the radio show down there. That's great. That's great. And do you enjoy doing that? Yeah. Yeah. Fantastic. That sounds great. let's just talk a little bit more about your H.I.E. Event.

Georgia 4:32

We think I contracted, if that's right, contracted PVL fairly early on because I did not move inside mum at all from the times that you are meant to start moving. So it basically meant that I was born, pretty much the way I am now. I have a few metal bits inside me. But they're new additions shall we say. That weren't there when I was born. But I've pretty much been physically like this for the majority of my life. And we don't really know why because I was only told I had PVL as they got, as they learnt more about it. So, we don't really know, like, Professionals and myself and my parents and extended family don't really understand why it happened to me, per se. Because my birth was at 40 plus 3, so 3 days, so we're not entirely sure why it occurred. Because On paper it was a normal birth, and everything was textbook on paper apart from the Like, this whole, the non movement, so we believe it happened fairly early that we can't pinpoint that date to be like, this is when and why.

Andrea 6:27

It's very common that we don't really know why or when exactly it occurred. I think it would be really interesting to hear more about your whole story can you tell us more about what happened throughout, I guess, to start off with throughout your childhood maybe talk a bit about school?

Georgia 6:46

Yeah, yeah, that's fine. I so I'm the youngest of three girls, and we're very close in age. My my eldest sister being only thirty three, so, like, there's only three and a half years between all of us, which makes it fun being the youngest of three. It was very loud. Household and we talked a lot about all sorts of random stuff, but yeah and this I had my event, but previously at my eldest sister has once has a completely different disability to me. So our childhood was normal in a way of. The fact that we had, like, the school and childhood stuff, but then it wasn't normal, in the fact that we, two, two out of three of us spent a lot of time in hospital. So for various things, because people think that doing certain surgeries would help and sadly it didn't really help either of us, really, unless we unless we needed it. And then my sister decided at 16 to have her legs amputated, so yeah. But school was standard, really. I started school at two years old and I went to a special, like, nursery, primary. And it became very clear to the staff and to my parents that while I was Physically quite disabled and complex needs. I was, had a lot of capacity, like normal age capacity. Which isn't always the case of people with my level of need. So then it was decided that I would, Go to do what they liked to call in the nineties, split placement between that and my sister's primary school. Okay. So once, twice a week I would go have, go to that school for two for what they called social interaction. It was basically. more on the social side So, so I could talk to people that were my age, but weren't disabled. Because I, it was decided that I needed to learn to communicate with people. Because, obviously, in special schools, the, the majority of people that can talk is, is not the same as, like, in a normal mainstream. And people were worried that I was not be able to hold a conversation apart from with my sisters which I do a lot obviously, but it's not fun. So yeah, it was quite shortly decided after that that I would go to normal mainstream school. And then for high school, Someone in their infinite wisdom decided I should go to mainstream high school for full time, like, Five days a week, which sadly didn't work out as well as we were promised it would, because they basically promised the earth and then didn't really deliver on anything. But yeah, that's another story. But yeah, and then. So I was again sent to like do, but that was more based on my education because it was also deemed while I was in primary school that I could, that I could actually succeed and get fairly good GCSEs. So they were like, You actually have to like, learn here rather than just coming in to like, talk to people. Which was fun to begin with. But yeah, that is basically a very potted history of my schooling okay.

Andrea 11:27

Well that sounds like it was not all easy at all. But was there anything, what could have been done differently? You said that they promised the earth and didn't deliver. What, what were the things that could have helped you, do you think, more?

Georgia 11:42

It wasn't really the school's fault it was more the people in my, my year group because they saw me as very severely disabled because they'd not seen anyone with disabilities so they all saw me as a fairly disabled person which, granted I am because of their perception of what I could be like, they Decided I was, it was best not to talk to me, so like no one in, for a little bit in primary school, I could get around in primary school because I had a few friends that would talk to me, but no one in high school apart from like the other Disabled students, because I went to, I went to a school with special needs, unit attached to it. Again, the council's, infinite wisdom, this was the way we educate people now. Didn't work and stuff, but yeah, because I went to, The only people that would talk to me was the disabled students, which was fine, but it wasn't basically what everyone had hoped, because everyone had hoped they could have integrated us a lot more, but because of the mainstream school perception of us. They didn't really educate us and, well, they didn't really include us. So I left school at 16 with a handful of GCSEs because also on top of this, the teachers didn't really have the expertise. expertise to differentiate or make anything understandable for me, except in like the science department of all places. But everyone else was like, I don't really know how to support someone at this level of which was fun. Because everyone would, either think I was really stupid or, and like, not able to access anything or they'd aim it too high. Because because I, because of my condition, I have no ability to record my answers, apart from, like, verbally, because I can't write or anything. So, and that was another barrier, because exam boards don't tend to like it when someone's Turns up and is like I want to do an exam, but I don't really have a way of recording it. So, everyone was a bit like we don't really know what to do. Except, like I said in the science department once, I had two teachers in my last couple years that said, We need to find a way. And they managed to find a way, basically, through a lot of coursework, and extra science lessons. So I came out of that with a D which is quite impressive. But I yeah. High school was, was a bit of a minefield, and also. Because they would never, because, because the physio portion of my education plan was meant to be coming from the local special school. They would never send the same physio because they'd be on maternity leave and starting their own families. So I would only ever see a physio like every two months, which is quite a difference from having to see a physio like all the time. Yeah. But also just being told, oh, follow that. physio plan with your health care assistant and they did what they could, but obviously because I wasn't seeing a video to do hands on stuff, it became my body would, my body would have deteriorated anyway. But my body deteriorated more because I got a false hip and had to have a spinal fusion at 18. Because no one was really keeping an eye from a physical point of view. But What my body was doing, because hormones and CP don't really go together. So yeah, of course it likes to do its own thing.

Andrea 17:15

It sounds like it must have been incredibly frustrating and upsetting not to be getting the support that you needed in that way. Yeah. And I, I, I mean, it feels like that's the biggest understatement in history as well. So I, I. I want to believe that in time and over time support, particularly in terms of helping helping students who have similar disabilities but would be able to access GCSEs, that the support in terms of exams and scribing and assistive technology and things like that are beginning to make things better. But my, my, my. Fear is probably that isn't the case. What, what would you say to any Professionals who are listening to this podcast or parents who've got children in a similar situation? Have you got suggestions for them for how to make it better? I would say

Georgia 18:16

the first thing is Make sure your EHCP, as it is now, is, is exactly what you need. Because mainstream high school don't, won't always provide what you need. Unless it's in black and white. So, if you need someone literally sat next to the person all the time, then make sure that that's written in because I've heard of stories and know people from my own sister's point of view who would take, because she needed minimal support, who would take her support need off her or her support time off her because it was deemed that she was able to do so I was My one suggestion would be, make sure it's all written down in black and white and no one can really like, not doing it, hopefully.

Andrea 19:23

Yeah, absolutely. It's a really good example of the last podcast I did was with a solicitor who helps people write EHCPs. And I think that she was saying exactly that, you know, having what the provision is required to meet each student's needs. written down in black and white is in that EHCP document in that legal document is so important and having it really specified and quantified as to the need. And, and I think, you know, even when that happens, I think making sure that that is then really happening in school is, is can be challenging still, but at least you've got some recourse if it's not. So yeah, okay. And, and in terms of integration, I know, you know, I've got friends who are keen for their children to attend a mainstream school because they want them to be able to make friendships of people, of other children who have similar abilities to them, you know, in terms of academic levels and social, social levels.

Georgia 20:25

Yeah.

Andrea 20:26

Obviously that, that, Sounds like that was the intention for you, but it didn't work out. Do you have advice for professionals or parents around any things that could have been done to try and make that easier or better?

Georgia 20:41

Again, my first tip would be don't It sounds backwards to what you're trying to acH.I.E.Ve, but don't force the kids to be friends with your person, because that just feels fake. Because I've, I had it in the past where someone was my buddy for the day, and then They would have to, like, be with me, or, well, would have to be with me, but they didn't really want to talk to me or have a conversation with me because it was forced and because they were only doing it because an adult was doing it, but I would also say on the flip side that you've got to also give them opportunities to talk to them by themselves. They can be left and you, like, be in the corner, or something, in case, like, a medical need. Because If there is someone standing or sitting or being with them all the time, then it's going to put people off. Yeah. Because they don't really want to talk to the person with the staff. Because break and lunchtime when you're in high school is important. And they don't want to talk to like, basically a teacher. Yeah. So yeah. Those are my thoughts. Two tips, don't force it, but also let them be on their own. If they can be, obviously.

Andrea 22:32

Yeah, okay. I think when we spoke before this recording, you, you were telling me how the having the adult with you all the time you felt was a real turn off for other students, particularly in high school, like you say, when you're a teenager, you don't want to be around the adult all the time. So.

Georgia 22:52

Yeah, it was, it was, that was basically the reason. Mainly because everyone in my group was not very nice to me. But that, I think, looking back as an older person now, I think that that was the start of a reason why no one wanted to really talk to me.

Andrea 23:20

Yeah, absolutely.

Georgia 23:22

Because, oh, because old people. In my sister's years, would talk to me, and just, because they were older, but not with much, but they realised, and I don't think everyone realised, in my year in particular, I don't think people realised there was going to be a. Severely disabled girl in their year. Not saying everyone needs massive signs, it's just, Oh by the way, there's going to be someone different in a year. I think. Some education when we were in primary school about how I was gonna be coming up to high school full time would have been beneficial because I also believe that I was, like, I think they thought I was just a guest when I was in primary school because I was only there, like, Two days a week. I don't think that it really dawned on the kids that I would then be coming up to high school full time.

Andrea 24:36

I think education and the way that adults are speaking and talking to their children about disability is so important. Have you got thoughts of what people can do better to educate their children and educate themselves, I think, in terms of disability and how to approach things differently, because I think, you know, it's clear that there's misunderstanding and there's prejudice and you know, all kinds of things that that go on. What, obviously, what you're already doing, doing these podcasts and getting out there and showing people how amazing you are and all the things that you are managing to do is, is, I guess, part of that education, but what else can we do?

Georgia 25:30

I think you've got to You've got to realize, you've got to make your kids realize in whatever way possible that people, people have disabilities but people's outcomes of those disabilities can be vastly different. Yes, there might be some kids that can walk with a bit of a limp or something. But there's also kids like myself that have complex needs but are still at the end of the day kids. I don't think, and I think they've also got to not make such a massive deal, well obviously tell them, but not make such a massive deal about the fact we are disabled. And just treat us like kids, or 30, or however old we are. Like, you've just got to realise. You've just got to help them realise that we are people with interests, and with families, and with people that also care about us. Like, we don't, we don't want to be reminded that we are disabled at like every chance. And I think the way that people educate their kids is that, oh that kid's different, that kid's disabled. And they're like, They forget themselves, as in the parents, teachers, or whoever's talking, forget themselves, that we are in fact children, or adults, we have lives, we have families, and we have interests. I don't think I don't think thinking that I'm just a disabled person is necessarily the way to educate

Andrea 27:32

someone. Yeah, I think that's so important. I feel like there is a lot of, almost fear at times of getting it wrong, of saying the wrong thing. And what then happens is people avoid things and they, you know, they don't, they're not they're not helping. And I, I think what you're saying there in terms of just, you know, almost not pointing it out, making sure that you are remembering that every person that you meet, disability or not, is a person, is a child and has interests and has families, is, is, is really important for everyone to be remembering and Yeah, because,

Georgia 28:14

yeah, we do things slightly differently, but We are still people at the end of the day. And, like, my own parents don't want to be reminded every 30 seconds that I walk down the street. I am ann a wheelchairld. And they don't want to be reminded that someone's to be careful of the wheels. Because when I drive out and about I see Oh, I hear parents say, Oh, be careful of the wheelchair. It's like, I am a person. I'm not just a wheelchair.

Andrea 28:53

Yeah. Yeah, and, and, you know, I think it's so, it's so easy for people to fall into the a feeling of feeling like they need to make sure their children are careful, make sure their children don't get in the way, make sure that they're mindful. And it probably comes from a, you know, a good place in terms of intention, right? But actually it's so useful for people to remember the impact that that has on you, on your family. it's actually about where can you be having a conversation that you would be having irrespective of disability, about somebody's interests, about what they are doing and what they enjoy. Is that right?

Georgia 29:38

Yeah, totally. It's the whole Like, it makes me feel like, when I'm walking out on the bus, it makes me feel like I'm something to be scared of. Yes, I have a massive wheelchair, and yes, I have the ability to accidentally run you over, but it's not something I tend to do. So, typical thing, I'll be Careful of Georgia, because it's big and scary. I'm like, I'm not going to intentionally run you over. Like, I don't, I don't see, I get what you've just said, but I don't see where this mindset comes from, or just because they're all just, they're intending to run you over. Like, no, no, no one intends to ruin anyone.

Andrea 30:33

No, of course not. No, of course not. And I think, you know, I think these are, these are, almost historical things that have come down through the ages of people having reactions and feelings and not understanding enough. And I think that's one of the reasons why it's so incredible that you do what you're doing in terms of speaking out and talking and coming on podcasts and doing a radio show and and helping people to understand. The better way to, to be able to, you know,

Georgia 31:05

yeah,

Andrea 31:06

not continue to do those things. So, yeah. Let's talk a little bit about your experience moving from school into adulthood, I guess. Tell us what happened at that point

Georgia 31:19

When I was fifteen, I was, it was always clear that I had more than more than just, My physical needs when I was outside the house, like I would, when I was driving, I would randomly fall off curbs and stuff and it was always quite It was clear that something wasn't right, but every time we asked someone, they were like, Oh, you just can't, you just can't see in 3D. And none of them were like, we don't know how they knew that, but okay. And then moved on. And then it wasn't until my paediatrician at the time was like, who had been working with, Someone else who I, who I later met and became friends with and she said, You do, the paediatricians, you do realise that you could be registered as visually impaired? And I was like helms, wait. What do you mean? There is such a thing is CVI, which is where the eyes, my eyes are absolutely fine, but my brain can't tell my eyes, well my eyes can't tell the brain what it's seeing, So, to me, the world is slightly more interesting, because I actually, as well as being deaf. wheelchair dependent not being able to move much, but I actually am registered visually impaired and I can't see out the corners of my eyes so I've got no peripheral vision. So that was diagnosed at like 15, and Because of that I was able to get into the West of England which down here is like a school for people who are visually impaired or blind. And they also have a variety of complex needs that go along with it, that you need to be actually registered as visually impaired or blind to go. i went there for sixth ck form, I guess you could say that was an interesting experience because I spent years not, not having the support. Because of my mainstream schooling, it was very hard to get into the world of, Oh, you can't do that because you're disabled. And I'd be like, yes, but I used to be able to, like, a term ago, let's just say. And they were like, no, we can't let you do that because you're in a special needs sector. So, yeah, that was interesting. And then when I was. 17, nearly turning 18. My back got so bad that you could actually from my heartbeat, from my stomach, so they decided, the big surgeons and bigwigs people that I needed to have a spinal fusion. So I actually got like my spine fused from my bum to my neck so I can't really bend forward anymore. I can't roll, unless I'm basically log rolled. And I can't sit unaided, because basically my spine decided to crumble and if they hadn't done anything I would not be here. So that was fun. And then when I, so after, and after like four months of healing at home, basically being looked after by my parents full time because the council needed specific training to come and look after me, and it took a long time to get that. So then I decided to leave the college because it wasn't really working for me anyway. So then I went to the day center Which I was at when I was a child, because they had an adult downstairs. So, I would go in and do various, like, activities, from cooking to music, to everything. And, like, I would, get the full care needs I had met there but and then, about six or seven years ago, I decided to leave that environment, and then I went, I had carers coming into my home, who specialized in cerebral palsy, because one of their people had, one of their sons had cerebral palsy. And so after they decided to set up this like, company, where it was only like, five of us and we would get this support we needed, but because they were specialised in CP, they knew what they were doing, so, but then that sadly broke down for a variety of reasons, just after lockdown, so then I went to, to a care agency which couldn't really provide the support I needed because I needed someone to take me out and do stuff more like an enabling visit than care visit. It was a bit of care thrown in, but because they were like just a standard care company, they didn't really have a very good understanding of, like, what enabling was. So then I, so then I left that and I we've been, we've been, my parents and me have employed my own staff for about a year? Yeah, a yearish now. So I have, currently I have two enablers that come in and, for eight, for eight hours a day. And they help me do all the care stuff that I need, but also they enable me more, and they do stuff with me that I need them to do. But they also take me out on stuff, and they help me do things like this podcast, or take me to talk at universities and stuff. So basically, it's a more open thing, and because we put them for ourselves, it's easier, because we can do like, we need you to cover X, Y, Z. Are you able to? And if they say yes, that's great, but also if they say no, that's not necessarily a problem, but it gives us more. Flexibility to be able to employ people and have the care and support when I need it. And it gives my mum and dad flexibility to be able to be like, I need to go because one of my sisters lives in near London. So, so it gives them flexibility to be like, I need to go. Would you mind staying here with the carers, or would you mind taking her on holiday, a one week old holiday type thing? There isn't, there isn't someone that I have to ask to do things now. I can just Within reasons, obviously, I can do it. So yeah, I would, that is basically my, that after school bit. But also, it's, I'm a big advocate for, if you can find the right carers, or the right support, employ them. By yourself, through yourself, is actually easier than people think it is. Because yes, you have to do the whole payroll malarkey. That's only like, once a month for like, half an hour tops. And the rest, the rest of the time is like, Pretty easy, really, if you can find the

Andrea 40:50

right people. That's great. I love the idea of them being enablers instead of carers I think that that is a great term and the way you describe the difference. What is the, what is the real difference that may, that allows them to be enablers instead of carers? What would you advise people?

Georgia 41:15

My, my, I'm looking at my enabler now. My advice is be open and honest about the support you need. And, like, the real difference is, because they were a care company, all they could do was provide the basics, but with being able to employ my own staff, they know, or they know me more than they know, obviously they know how to keep me safe and how to provide the carer needs but they also know me as me and they'll, they support me. And I think that's the difference because they know me as me and not just a name on a piece of paper than needs carers. I think it's easier for them to actually enable me, rather to care for me.

Andrea 42:21

Yeah. I think, I think that's so important. I'm saying hello if your enabler is there in the background. Hi there. Waving. Waving back. It sounds amazing. And I'm so, I'm so happy to see that that is working out for you now. Because it just sounds like you've had such a journey with so many things that you have had to deal with and overcome. And I, and I'm. really pleased to know that that is, you know, that's working out for you now, which is great. In this podcast, We've talked about so much already that I know is going to be helpful and inspiring but what else would you like to tell everyone who's listening? Just

Georgia 43:07

see, see, yes it's not great news when your child has a H.I.E. Event and no one's like, oh yay, but they are They are like, life is not going to be as bad as perceived, because I, on paper, I am a very disabled lady. But I think my parents attitude of it, it will be challenging, but it won't stop you. So, it's their attitude that I've taken forward to be like, okay. It might be interesting getting around this particular issue. And I might have to have carers for the rest of my life or my mum and dad there. But there isn't much I can not do. That's

Andrea 44:14

brilliant. How about the, professionals that you've been working with across the years? I guess there's been, you know, a big variety. Is there anything that you would advise them

Georgia 44:32

Yeah, no. Look, look at the person you're looking after. Don't just see them as a disabled person with in the case of physios, a body that doesn't work, or in the case of speech and language, someone that can't speak or something, because they we are, in fact, people, and yes, we might not want to do that therapy in the prescribed way that we're meant to do it, but we do have, we have there is a way that you can make. Therapy like, more fun without the person realising it's therapy. It doesn't have to be, oh, we move your arm five times, or we move your leg five times, and then we're actually seeing the video programme's done. You can actually, you can actually talk to them like they're people. Yeah. And think, how do you want, how do you want to reach this target or something. But yeah, that would be my Advice.

Andrea 45:49

Yeah, and you would just hope that that is what happens naturally, but I think you know, I've seen and I know everybody who's in the situation of loving somebody who had an H.I.E. Event has definitely witnessed times where that is sadly not the case. So that's a really, really good, good message. For any of the children are, or adults potentially who are li listening to this, who had an H.I.E. Event, have you got any advice or a message for them

Georgia 46:23

depending on where you are in the system? I know your bodies are probably not. what you really want this to be because of your, however extensive your damage is there is also, you can do stuff like, and I know you probably don't want to have someone with you all the time, but if that's, if that's the way that you can do something, then I would Go ahead and do it because it's better than just not doing anything because you don't want to have someone with you.

Andrea 47:05

Yeah, absolutely. And you're, you know, you're an incredibly positive person and the way that you talk about this is so amazing. What, what do you think helps you? the most to be so positive in everything you're doing?

Georgia 47:25

Knowing, I think, I guess it's more knowing that I have to have the level of support I do and I have to do things that are not necessarily the most fun, but also knowing that there's like No other way around doing that and knowing that, like, basically not coming to terms with it because I don't, I don't think I'll ever come, come to terms with the fact that I'm not, case in point, able, or as able as, say, my sisters are, but, and I do have moments where, because one of them's married and one of them's having a baby, I do have moments where And like, if life was different, I'd want to do that. But also, I have, I have to be realistic and realise that, yes, it's probably possible. But also, I, I have to also come to terms with the fact that my life is different. And it's taken me almost 30 years to realise that. My life is, life is different, but it's not, it's not bad. Mm-Hmm. It's just not the same as what my mom and dad envisioned I was first. I think is what I would say.

Andrea 49:07

That's, you know, it's amazing you're saying it's taken 30 years to get to the point where you feel that way. And I think it's, you know, fantastic that you feel that way. And I've just loved talking to you and hearing everything you've had to say. Through the more difficult times, what, what was your biggest help, I guess, in getting through some of the more challenging times?

Georgia 49:31

If I'm honest, antidepressants. Because when I was, when I was, when I do have really bad times, I really want to do a little bit. And that includes having, Some of the procedures and care that I need to have done, done. So if I'm, so if it takes taking a tablet to make it possible to like get through windows of, of, Not feeling the happiest, or not wanting to put on a TV, not wanting to put on a show for everyone. Then, it's taken me a while to accept my need for antidepressants I don't think I would be able to be this. Positive and be this, like, matter of fact about the situation as I am, without them, without the antidepressants. Because they just take the edge off of everything. And the edge off the fact that I'm like, Oh, it's another day when I've got to do this. Because, it's just, they just make my life easier in a way.

Andrea 51:04

As they do, I'm sure for a lot of us and a lot of people that will be listening to this as well. So I think that's a, I think that's really, really useful. And in, and in terms of the, Parents listening and, you know, those of us who want to be able to support our children going through some of these difficult times and coming to terms with the disabilities that they have, what advice can you give parents for helping in the best way?

Georgia 51:35

That's a bit of a hard one. But, You've got to basically, because it's, I, I, I'm not a parent, but I imagine it's hard enough for you to come to terms with it But, because you're the parent and you obviously don't want that for your child, whatever the situation is, you want their life to be as happy as it can be. But also, I think you've, you might have come to terms with it as the parent in whatever situation. But you've got to realise it takes time for the person with the H.I.E. Event is too complicated because it's not going to be easy, like your, our bodies tend to just chuck up random things at a time once you, once you think something's dealt with, it normally comes back around again, so I would say it takes, you've got to like give them time to be like, This is not the easiest situation, and eventually, whether it's with the help of antidepressants, or just in general, they will slowly come around to it, but yeah, I would say, give them time, especially if a teenager's going through the normal changes and then you add on body changes, then, then it's not the easiest situation to, my advice would be time, it's probably the easiest.

Andrea 53:28

Thank you. Oh, Georges, it's been so amazing to talk to you and I, I I think probably we need to wrap up. But before we do, is there, is there like one last message you'd like to leave everybody with?

Georgia 53:42

Life is not easy, no, but it's also, life is, life's not easy for like anyone, like everyone has challenges This is just a bigger challenge than most people would have. Especially at my age, it's, it's, it is what it is, and it kind of, yes, it's not great, but also everyone has issues and challenges, they don't, like, just because you are, you know, Disabled and you had a H.I.E. And it doesn't mean that your life is over.

Andrea 54:29

That's amazing. And it's been just such a pleasure to meet you and get to know you and to have this conversation today. I'm so excited. Grateful for you coming to us and saying that you'd like to do this firstly, and, and I'm sure that there's going to be people listening who've got other questions and I haven't asked the right one. So I'm gonna suggest to anyone listening if you've got questions that you want to ask Georgia, I'm wondering, Georgia, if you'd be happy for people to write comments on the posts and Yes, that's fine. Come back to you with those and, and also, you know, in the future, I'm sure there's gonna be other. topics that you might be able to really help us to talk about on this podcast. So huge thank you to you. It's been so lovely. And look forward to keeping in touch with you.

Georgia 55:15

No problem. Thank you.

55:19

Mhm.