Who Cares? With Niamh and Sara Podcast
Two friends discuss the highs and lows of life as mothers to severely disabled children with dark humour, a unique insight and brutal honesty
Who Cares? With Niamh and Sara Podcast
“Aoife “
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In this episode we chat to Aoife about her experiences of growing up with an older sister with special needs
Good afternoon, Eva. Good afternoon, Sarah. Here we are. Yes. And we've got someone else with us today. We have a guest today. We thought it'd be interesting to get the perspective of a sibling. That's right. We've got Saucia's sister with us today, Ava. And we're gonna ask her some questions because we always talk about the parents and how it affects us and the kids, how it affects it, but we don't talk about what how having a special needs sibling affects someone. So Ava, welcome. Thank you. Right, so just tell us a bit about yourself and Ava.
SPEAKER_01I'm 25, so I'm a year younger than Sortia. And as you previously said, Sortia is my sister. And that's usually what I go lead. That's what I lead with when I introduce myself.
SPEAKER_03So when you when you talk about Sortia, do you I mean how do you raise the quest raise the subject of Sorsha, or do you ever? Because now it's very different being 25 to when you were say five. How does it come up? Does it come up when you meet new people, for example?
SPEAKER_01It might sometimes. Um sometimes people will make inappropriate jokes, and I love to see them squirm when I turn around and say, Oh, my sister's got down syndrome actually. Like what what inappropriate sort of thing I'm not allowed to say, so it's a bit like people will say like the Ar Sler, or they will say, Oh, you look like you've got Down syndrome in a in a in a mean way, in a nasty way. Not to me specifically.
SPEAKER_03People actually say that to each other.
SPEAKER_01Maybe I maybe, yeah, sometimes. Sometimes and then what happens people people kind of down syndrome's kind of a little bit of an anecdote sometimes. It's a bit of a joke.
SPEAKER_02So I love to see people So it's like they're trying to put you put someone down by saying they're dancing, yeah, and then you say and then I say, Well, actually, my sister's got down.
SPEAKER_01Do you like say that? I love it. And I love seeing them squirms, cringe and then they fall over themselves to apologise, and yeah, and and they do do that. Yeah, it gives me a weird sort of sick kick.
SPEAKER_02Yeah, so tell us about your relationship with your sister because it's obviously going to be a different relationship to two sisters who one of them hasn't got special names.
SPEAKER_01Yeah, well, Sorsha's my only point of reference, she's my only sister. Yeah, so um I don't really see it as anything unusual, I just it's just my sister. Yeah, but I I remember a lot when I was younger, I would always feel quite lonely because I would, you know, I'd never have someone to go and talk to about like oh mum's pissing me off, or yeah. I can't imagine that. People would always say, Oh, my sister knows someone, or I was out with my sister, or this, this, this about my sister, or my brother, and I would just like I'd be like, Yeah, my sister just not operating on that level, she's just sitting in her room.
SPEAKER_02Did you used to fight with your sister when you were younger? We used to like sisters do because I've got a sister who's a year and ten months younger than me, and we used to fight terrible, yeah.
SPEAKER_01Sorsha and I used to wrestle a lot when we were like little, and then um maybe when I was about nine, ten, the wrestling got a little bit Sorsha didn't really know how to rein it in. Yeah. So I would be sitting back placing bits. Yeah. I would I wouldn't stop. I would I would always I'd end up with it would end up in tears basically. My tears.
SPEAKER_03Did you have to hold did you realise that you had to hold back? Yeah, very much. So how old were you, do you think, when you realised that Sorsha had special needs or was different?
SPEAKER_01I think I was quite young, actually. I think I sort of remember maybe about three or four thinking, why doesn't she play like other children? Why doesn't she talk like other children?
SPEAKER_03Really?
SPEAKER_01I think I and I think I remember asking you why is Sorcia different?
SPEAKER_02Yeah.
SPEAKER_01Yeah.
SPEAKER_02Did you find because like obviously when you're both little, it's not such a big difference. No. But then all of a sudden you start going forward and she stays where she is. Is it w when did that happen? When did you notice that the the difference as she because she she she stayed the same? Probably in school.
SPEAKER_01Yeah.
SPEAKER_02When we were around other children.
SPEAKER_01Did you go to the same school? I went to the same school for primary school, yeah.
SPEAKER_03See, that's unusual as well, because obviously. Because she went to mainstream school mainstream school, and you had the only sister in the school.
SPEAKER_01Yeah. Down since everyone knew that Sortia was my sister, and I guess that came with some benefits. What was it, the neon light on your head? I am the sister, so you're not the head.
SPEAKER_02So you're you're not you're not you, you're Sorcer's sister.
SPEAKER_01No, I won't say that at all. No, no, no. I mean I've always been able to stand my own ground.
SPEAKER_03Yes. Yes. A little quirky in her own way.
SPEAKER_01Yes. Um yeah, no, I think I just I noticed that there was a difference between Sorcerer and my peers, probably when we started going to school. And um, you know, at that age a a year is a big difference, so she was a year above me.
SPEAKER_03So I would just sort of I do remember having a conversation one time with one of the teachers, and I know the staff as a whole were very conscious about keeping you both separate. They didn't want to see you as her keeper or her minder or having to play with her in the playground or anything like that, and they wanted to keep you both separate because they wanted you to grow up in your own way with your own peer group and not feel I think you did it very well. My god. But um I just remember having that conversation with the teacher saying, No, no, no, we're very conscious that uh Ether does her own thing and that um sorcery is doing her thing. I mean, how did people tr treat you or say things to you at school at that age at primary school? Did they I mean did they ask you questions about her or anything?
SPEAKER_01Yeah, I remember people used to ask me what's wrong with your sister, and I would get quite defensive about it, and there would there was like no need for me to because they weren't they weren't being cruel, they were just being curious, but you know, it can be a little bit but you feel defensive, don't you? I feel you feel like you asked to defend her as well, yeah. Yeah, and just sort of like you know, it and especially when people say what's wrong with your sister.
SPEAKER_02There's nothing there's nothing wrong with her. I begged to say was there any has there been any time as you've been growing up, have you ever been embarrassed by your sister? All the time. Yeah, yeah.
SPEAKER_01In what way? Um sometimes she'll have like meltdowns in public. Right. Which when I was maybe like a younger teenager were absolutely mortifying.
SPEAKER_02But teenagers are embarrassed by everything.
SPEAKER_01Yeah, I mean she would you know kick off or stomp, and um, you know, she's not exactly subtle when it comes to her.
SPEAKER_02And that's got worse as as she's got older. Yeah. Um do you find it easier now you're an adult then? Absolutely. I I would not, you just accept it. I used to get so upset about people staring.
SPEAKER_04Yeah.
SPEAKER_01I still I still do get quite annoyed about it, but not to the level I used to. I mean, I used to just want to want the ground to swallow me up. Like it was just awful. And then I guess from that I started to react with more aggression. I used to start giving people dirty looks, and I used to I eventually started saying things.
SPEAKER_02Yeah, but I I could still do that as a parent. Like you can see someone staring at oh especially little kids and they're all staring back at it.
SPEAKER_03It's hard it's a hard.
SPEAKER_02And then you then you think you find yourself staring at some little kid and you think stop.
SPEAKER_03Absolutely, and you want to blow it. Because they're just cu they are just curious. When they're small they are, but I think as well, if you as you get older, you might it the whole thing of being protective towards her must come into play. Because she can't she can't defend for herself. So yeah. I mean, we heard of an incident oh a while back now, where a girl was walking with her young brother who had Down syndrome, and similar age to you, and in a position where she was walking along, and some people started laughing at him and mimicking him. And I can't imagine how awful it must have been for her as his sister having to endure that because of course he was oblivious, but for her it was very painful, and you know, she obviously reacted and called them out on it. But her mum, fair play to her mum, went in because they were schoolboys, went into the school the next day, sorted out who it was, and then the headmaster got involved and made them listen to the podcast. Yeah, this podcast. Yeah, this podcast, because we just done one called Hello! Just a done one called Stop Staring, and the mum said, I've just heard a podcast about this very thing, and his reaction was to make these. So we're now a punishment for teenagers put a big light. But just hearing you say, uh you know, what struck me about that story was about how that sister must have felt reacting to that because it's so painful. What can you do?
SPEAKER_01And embarrassing, everything all at once. You leap into sort of protective mode. I found now that I'm a bit older, especially coming back and forth from uni, I feel much more protective of Sorcer than I ever did before. Before it was like, oh she's my sister, like okay, like I'll stand up for her or whatever. But now it's a more sort of like she needs to be looked after and protected, kind of almost not maternal, but almost in a way a little extra. I need she needs a little extra.
SPEAKER_02Do you think that's because you spend a bit of time away from her and then coming up?
SPEAKER_01It may well be uh yeah, just and just coming back and seeing the realities and seeing how slow she is and how vulnerable she's because you're away from it and you're not seeing it all the time.
SPEAKER_02Then you come back and then you go, Oh yeah, it is that's that's difficult. Yeah. How do you think she feels towards you?
SPEAKER_00I don't know. Sometimes she looks like she wants to whack me around the head. Yeah, she she looks at me like that as well.
SPEAKER_01And then sometimes sometimes she'll sort of be a bit indifferent. Like I'll go up and say, Oh, do you want a drink? She'll be like, No. Do you feel like you've got a special bond with her though? Yeah. We can sort of look at each other. It it depends on her moods mainly, but sometimes I'll just look at her and she'll just burst out laughing, and it's like there's someone in there. Yeah, there is like Yeah, she's got she's got a she's got a little character in here.
SPEAKER_03Yeah, the thing is her moods can just be so volatile that like and I have noticed as well as you both got older, there's a little bit of uh joint joint rebellion going on against the mother. So that's normal, that knows it is, but I never expected it, and now it is definitely happening. You sort of I can see them sometimes sitting together looking. I'm thinking, alright, okay, I'm in the wrong field.
SPEAKER_02Even me, even me and I go on a bit, but even me and my brother, like my brother's 40 coming up 43, I'm 54, but we still like when we're there with my mum, we'll have a little gang up on my mum. Stop moaning.
SPEAKER_03But I think as well as she idolises you in her in her way. Yeah, I must be careful to do anything. So you're a point of reference of what a young lady is. And although she knows that you're younger than her, because we say your little sister, she absolutely she she treats you as her sister, her big sister. And sometimes when I'm trying to get her to behave, it's quite a useful tool. I'll say, Well, you've got to do it like Either. You know, eat that like Ether does, or you want to drink that like okay.
SPEAKER_02As soon as she knows that her sister does it, then well, because we've talked before about her wanting a uh shave when she wants to because she wants to be like you.
SPEAKER_00Yeah, yeah. I'm just gonna be able to do it. Yeah, that blue needs to go.
SPEAKER_03Yeah, growing out for November, yeah. Did you ever feel right? This is a a kind of difficult thing, but did you ever feel that you were being pushed out?
unknownNo.
SPEAKER_03You weren't getting the attention when you did.
SPEAKER_01I think I was I'll give you the fibre later. Yeah, yeah, yeah. Um do you know what actually? I feel like you really not compensated, I feel like compensate is a bad word, but I I remember I always got a present when it was Saucia's birthday. But likewise Saucha would always get a present when it was my birthday.
SPEAKER_02Um yeah, there was But uh in pushed out, you know, like not you know, like Sortia with hospital appointments and stuff that you have to do with a child with special needs. Do you ever felt like you were sort of like, oh we've got to go and do this now, we've got to go and do this, or or was it just part of because it was just part of family life, it was just to be expected. Because that was always my worry that was but there's a big gap between Jake and Oliver. Yeah, yeah. So there's like 12 years, but I felt because Jake had me for 12 years on his arm.
SPEAKER_01You was she was already born when you come along when we were joined at the hip, basically. But yeah, no, it was just you know, I I think maybe as I got a bit older, it was a bit oh I've got to go here with Fort. And that was when I would start to feel maybe more embarrassed. But um But did you ever feel any resentment? Sometimes, yeah, it was sometimes like oh why can't I just be normal, have a normal sister?
SPEAKER_04Yeah.
SPEAKER_01But I feel like that's completely normal and natural for any child in my position to feel like that, even if they've got other siblings who aren't disabled.
SPEAKER_02Because I I I I think my personal opinion is that sometimes siblings can feel jealous of their you know, like siblings can be jealous of each other. Yeah, absolutely. Like an old uh like a younger uh an older sibling can be jealous of a younger sibling just because they get more attention because they're the youngest. Yeah. But sometimes if you've got a if you've got a brother or sister that's got special needs, you feel guilty for feeling jealous because it's it's it doesn't feel like when you feel guilty, you think, oh I'm gonna be.
SPEAKER_03You feel guilty for feeling jealous.
SPEAKER_02Whereas if it was if you're both your you were both, as it were, normal, you can you don't feel guilty. You go, you love her more than me. Yeah. You do you do more for her than you do for me, or you do more for him than you. But then they feel then there's a guilt to it, you think, well, I can't feel I can't feel jealous. I shouldn't. I shouldn't feel jealous. Something socially and then that can manifest somewhere else.
SPEAKER_03Yeah, I suppose so. But do you ever feel resentful that because she has Down syndrome she gets attention and support that you don't necessarily get?
SPEAKER_01No, because she's got Down syndrome and that means she misses out on a lot of things that I get as well.
SPEAKER_03So you think that she misses out on what?
SPEAKER_01She's never gonna go to the club. She's never gonna have a boyfriend, she's never gonna go out with a girl either.
SPEAKER_02So that's a compensation to get all to get more attention.
SPEAKER_01I yeah, I suppose. No, it's a good one, it's a good outlook. Yeah, I I never felt jealous of Saul Shaw or anything. If anything, it might have been the opposite.
SPEAKER_03I I always felt sort of sorry for I know no one likes to have everyone feel sorry for them, but you know, there were there were probably there's a compassion there, yeah, absolutely because of the situation and that I mean when when you were both born, it was separate times I would have you know. It wasn't just about yeah, right.
SPEAKER_02It was just about have a baby, get pregnant again.
SPEAKER_03There was definitely an element of I you know I need to try and make this child happy, but my second child also needs to be made happy, and it was hard, but I had to sort of keep saying to myself, I don't want to feel sorry for Sortia, but I do know there are things that she's never gonna have, never gonna achieve. And that did make me sad. Yeah, and I don't know. I don't know whether I don't know whether I sort of then put more effort in to making sure you achieved the things I knew you could achieve because of that. I don't know, but I think when you got to a certain age, maybe when you were going to secondary school, that kind of changed because that's when you actually divorced at school, wasn't it? I mean you went so when you started secondary school, you started in a school where hardly anyone knew you yet. So how and sorta was at a s a special needs school by this stage. So how did that feel, knowing that at home you had a daughter. When you're a teenager, you've got a sister at home that nobody knew anything about.
SPEAKER_01Um Do you know what? It did come up in like um I remember being nervous to meet people anyway, but then having the added, oh yeah, when you come round my house after school or whatever, my sister's gonna be there. But I think I think like you, I always sort of deflect with humour.
SPEAKER_03Yeah.
SPEAKER_01So I'd always say, like, oh she's not gonna like chop your head off or anything. Let her smell your head. Yeah, let her smell. Yeah.
SPEAKER_03When she goes through with that act, just try and pretend she hasn't gotten a lot. Just don't make eye contact, just shallow breathing, don't let us smell the fear. So okay then you don't mind you've got an aggressive dog. Yeah, she is. So you told me something interesting a little while back with regards to boyfriends, and you said sometimes now you don't tell them that you've got a sister with Down syndrome purely because you want to see their reaction.
SPEAKER_02Yeah, it's like a tester. Yeah, what to see if they're if they're um they if they're good at it. If they're good enough. Good ones enough about that.
SPEAKER_03I think that's hilarious. I don't know what you're talking about. Um you just give away your secret. Has a boy ever reacted in a bad way? That's made you feel right now. I don't like or as the young say nowadays, give you the ick, give me the ick.
SPEAKER_01Well they've usually they've done a lot of things to give me the ick before I before I bring them back to the house, but I I endure. Um sometimes it's interesting to see people who have no experience interacting with people with special needs. Really? And just see.
SPEAKER_02Some people are just naturally good with people with special needs, some people have just got no idea what they're doing.
SPEAKER_01You can you can see you can almost see the beads of sweat just like pulling on their own. Don't know what to say, just don't know where to look. Do I look at them?
SPEAKER_03That's quite perverse.
SPEAKER_01I mean it's like a sport. I'm watching them have a react. I remember I had a boyfriend once who was like Sunts? Yeah, alright. Who was like Sup to Saucha? What does sub mean? It means it means what's up, and like you sort of, like what's up, what's up? Oh damn with the kids are up. And he he did that to Sortia, and I just sort of pissed myself laughing. It's like, yeah, that is how you would greet someone normally. Like, yeah, you would sort of go, Oh, what's up? Like, how you doing? But it's Sorsha. And Sortia's just sat on the couch eating a banana, watching Big Bang Theory, doing her thing. What's up? Like, yeah, sup, Sorsha. Yeah.
SPEAKER_03I think it's funny as well sometimes watching Sortia's reaction. Yeah, I love it. Especially if you're going to bring a bow into the house. Sometimes I think how saucy gonna be. And it's got to the point where she she can't be bothered moving from the couch or she won't come downstairs. But other times I've been really surprised because she'll go up to somebody and give them a hug. Slag.
SPEAKER_02And it's nothing.
SPEAKER_03My sister's done it to me. It's not everybody, it's just some people she obviously chooses, and some people I wonder what it do you think?
SPEAKER_02We all got you meet someone and you like them or you don't like them, and you get that sixth cent. So Sortia's only the same as everybody else, and it's that all clipness test actually for boyfriends, just like has it has she proved right or wrong?
SPEAKER_01Well, I'm single now, so that's all so.
SPEAKER_03With regards to Sortia getting older and you getting older, do you ever think or worry about the future?
SPEAKER_01I do, yeah. I th I worry about the future in all capacities, not specifically.
SPEAKER_03You worry full stuff. I'm terrified like the generation generation, what are you? I'm Gen Z. Gen Z. What does Gen Z mean?
SPEAKER_01Generation Z. Yeah, what date? Um about late 90s to about 2005.
SPEAKER_03Are you a nice generation or are you?
SPEAKER_01Yeah, we're not quite iPad babies. We're all just a bit apathetic. Are you down with this?
SPEAKER_03Yeah, I'm Gen X. You're Gen Yes, yeah, you're X alright. We just don't give a short. You're a boomer. You know what I mean? That's all I get told. Mum to do it. That's what inappropriate name. Such a boomer. Even sausage can. If Sortia could say boomer.
SPEAKER_01Based on its popular setup, yeah, you're definitely a boomer. It's working okay.
SPEAKER_02It's an iPad on a on a studio like that.
SPEAKER_01This is a really nicely furnished studio. Actually high end both lights and the other day.
SPEAKER_03Just looked up at me and said, Shut up. And I thought that is so like a young. youngster telling a boomer to shut up. She said it so appropriately because I was nagging her about a drink. Well thank you. See that's what I mean going up on you. That's what I mean about going up.
SPEAKER_02So what was your let me ask her a question. No I wouldn't know what do you what do you how do you see your role in her life now and how do you see your role in her life in the future because the future like as she gets older as you get older I like to think that Sortia will always be in my life in my house.
SPEAKER_01You know it in in an ideal world I would have a little annex to put Sorsha give her her own independence. You think that you'll have Sorsha when she's I hope so I hope that I'm in a financial position in like a housing position to be able to do that. I hope I'm my family well of course they would I mean she's my family as well but I hope that you know you're very rich billion husbands that sort of with a great inheritance yeah and a dicky heart yeah I've told it mummy's told you that lots of times and because I know there's a big thing we talked about before that there was to not put pressure on the other children to for when we're not here to take on the responsibility that we've had to take on um yeah and I don't see that as a burden at all I see that as my duty you know I don't see it as like oh god like what's gonna happen.
SPEAKER_03It's just yeah I just got my sister and she's gonna come and live with me and that if I can as sure as the sun will rise like that's what will happen and I will do my best to look after and we I mean we have talked about keep her comfortable and I have actively tried not to talk you out of it but I've sort of said well you know I want you to have your independence and we have sort of discussed that. I think in the long term that would be a good outcome as long as you've had your life first.
SPEAKER_01Yeah and I don't doubt that I won't have had a life before that happened. Because you're on a hydin at the moment you're getting a life all right travelling a lot I'm at uni I'm getting my degree where were you last week? I was in the Netherlands you were in Amsterdam did you have fun? I did have fun in Amsterdam how do you think Sorsha would have handled the the cake shops um I think she would have liked the zoo I know I did and she would have liked the tulips and I mean you went on holiday yeah and I go on holiday a lot which was nice without Sorsha but when we have gone with Sortia for example I'm trying to think of the last trip we went to get probably the American trip did you all go together?
SPEAKER_03We went together.
SPEAKER_01That was like ten years ago. Yeah but how was that though?
SPEAKER_02It was great I was in America I got Cheetos and I got taco bells so you don't see as there was no you all your holidays you see as good experiences.
SPEAKER_01Yeah Sorsha is part of my life yeah Sorsha is as part of me as my right arm. She just is part of my family and my setup and now as you've got older you're happy with that and I'm happy with that and I'm happy to be there for Sorsha and do what I can to make sure Sorsha's happy.
SPEAKER_03When you meet other people who've got brothers or sisters with Down syndrome do you click? Do you empathise how I mean does it come up?
SPEAKER_01Because you've got a few friends who've got or you've had a few friends that have had siblings with special needs haven't you? Um I've never actually had a friend who's got someone with Down syndrome in their life but I've met people who have you know maybe autistic brothers and sisters or just differently abled do you click better with them than you do with other people you've got a No because it's such a small part of our lives and our personality it's like why would I base my entire personality on my sister? Why would that that's not a good ground for friendship the only thing we've got in common sense yeah friends we're not friends for God's sake I think yeah it's there must be an empathy as well. Yeah absolutely there's an understanding but it's not necessarily a sort of like we're best friends for life now because we've both got a disabled sibling it's just how has it affected your outlook when you meet people with special needs then um when you see somebody in the shop or in a club or on holiday we don't really see people with Down syndrome in the club but yeah um pub cut that up but anywhere you go um yeah when I see someone with special needs I just always sort of yep there's one I then another one I if I hear you know shouting or screaming. I think do you know what I think in today's day and age most people are very tolerant.
SPEAKER_02Do you? I do because if you get more tolerant now if you hear shouting you're gonna look I don't see we spoke about this before and we said I think it's because years ago a lot of people special needs were hidden away. Yeah they weren't out in the community with everybody else you did if your kid was one that was shouting and screaming and throwing wobblies and throwing themselves on the floor unless it was a two year old they didn't they didn't take them out. They were embarrassed and they were embarrassed by them and now it's more integrated it's just because you've grown I mean you've grown up with it because your sister's got special needs but a lot more there a lot there's not more integration so there's a lot more understanding in this generation. I certainly think that because I know not so much the older generation not your your not the old booners not our bloody old the gen whatever and Gen Z and the ones a little bit older than you I notice when I'm out and about even even something like on a train or out shopping or a park or something they're far more tolerant like yesterday even when far more tolerant than the older people but but kind of they're they're actively happy to talk or smile at that we went to um we went took Oliver bowling um a little while ago me and Dave took Oliver bowling and he was getting all excited he's getting him got we got him out of his wheelchair and we put him on the seat and then we stand him up to walk over to put the bowling ball down and there was this young couple next to us and they was young they was your age um and they was bowling and the the boy came over and he said can I pay for him to have another game of bowling because he'd seen how much Oliver was getting excited by it and I just thought it was really sweet.
SPEAKER_03He'd been watching him and he just said oh he didn't know what to say so he'd just come over and said can I pay for him to have another game of bowling and I went no bored now but I think there is that there's the they're far more proactive yesterday saw she had an appointment at the hospital and I was sitting in the waiting room we had to wait quite a while and I gave her my phone so she was flicking through all of the camera the things and she kept freezing it I don't know what she kept doing tapping it and being the boomer that I am I couldn't deal with it. So there were two young girls in front of me when I say young they were about your age and really young they had yeah they were a little bit little bit younger than me Sarah and they had their phones and I thought I can't do this and she was starting to get really annoyed because we'd had quite a long wait so I went up to them and I said excuse me only sorry but is there any way you could tell me what I have to do with this phone the old girl with her phone they looked at me as if to say what and I said I just can't do it I said and my daughter's done something to it and they looked round at her and they took the phone off me and they went ah da da da da da da da refresh it tap it dabble click it I don't know what they were talking about and they did it and they and they fixed it and I said oh thank you and they handed they turned around and they handed it to Sortia and they went here you are I hope it's okay now and I thought that was so sweet. Okay they bypassed the boomer they went straight to the kid and gave her the phone and I thought probably no they probably thought she knows how to work it better than you yeah they probably did and they were probably right as well and I just thought they had no qualms about it no issues that girl's got down syndrome obviously it doesn't matter we'll just give her a phone back and they talked directly to her and I just thought that was really sweet what a change in in attitude and it's quite heartening to see that your generation have really come out their shells and are very comfortable about talking to people anybody with special needs and like you say observing it. Yeah you know so um so we have got to look forward to the next round of people coming to the house and get tested to see how they deal with we're given points out what do you mean in the studio? In the studio in the studio with the sweet Sorsha's not in the studio Sorsha's at home and you are back to uni soon I am yeah oh parting is such sad sweet sorrow so I'll be back in a month. Yeah enough of being I'm gonna go back to Welsh Wales. You the nice thing is when you phone Sorsha always expects to have a video calletime yeah oh FaceTime when we use the FaceTime Oh she likes the FaceTime you when you call the ha when you call the house but only only her she won't do it with me. She's sicker looking but the other thing that's interesting I've noticed recently and I mean recently past six to eight months now there's a definite change in Sorsha when Ether turns up because she's almost begrudging oh having to share me my attention oh really yeah I was gonna say does she get excited when she comes when you gets really excited when she knows she's coming back doesn't she gives you a big hug all happy about an hour later it's like right now it's like that's enough that's enough now and you can see her she changes she gets quite narky she gets quite reserved as well she sort of is she different when you're here to when yeah when Eve goes back she is uh in the beginning very cuddly with me hugging me love you Neve that crack crack and then about the next day it's like but we were in Dublin recently for a family party we were in a for a party and sh Eva arrived later so for the first two days it was me and Sorcia with my aunt and she and she was very um you know cuddly and nice and happy as soon as Afa arrived completely changed she got really sulky she didn't no no no my aunt was the one who pointed it out my aunt said look at her behaviour she does not like sharing you and asking no no no no that's rubbish because no she doesn't like sharing you she just doesn't like me but what I I mean you used to go to a carers club didn't you provided because I don't know how much it wasn't at school it was I think it was through like the local council or something.
SPEAKER_01Yeah but yeah I went to a carers club did that help was it it was not it was like a youth club but like I was sort of saying earlier the only thing we had in common was that you all was that we all had someone in our families who had special needs and that's not that's not that's not who you are a big thing to have in common with someone.
SPEAKER_02Yeah and also sorry they used to have one at um Haven House they used to have a um siblings group at Haven House they're there are buddy buddies it was called they had a buddies hut so they used to do because they do days out and stuff with the kids with oh that's really interesting for the brothers and sisters for the brothers and sisters so it's run separately by somebody else and they'd get special days out just for this for the brothers and sisters. That was all for brothers and sisters of because obviously they've got seriously sick children and they would go and stay at Hoven House to get them the to give the parents a break. Do they get counselling and things like that as well? Yeah they do counselling at Haven House as well for for parents and for siblings.
SPEAKER_01That's really big because we didn't get counselling we went to Legoland it was a bit lame it was a bit lame though wasn't it your group it wasn't lame it was do you know what I think it was more so for children whose parents had they and it was children who wouldn't have necessarily been able to go to Legoland with their parents because they're at home carefully and it's a blurred line.
SPEAKER_02And it it was a blurred line and it just it wasn't the right sort of niche for me but it was it was fun looking of everything yeah rather than specifically siblings yeah yeah what is that going over our studio excuse me love it rather than so listen thank you very much thank you for having me I've really enjoyed chatting to us in our studio keep pointing out that we've got a studio you could see it and um wish you well thank you enjoy the turn I will thank you thank you for having me and Sarah and I will meet again again when we'll have someone else in here we will brilliant who have you got coming oh well it's a surprise to be back with tea all right then love you and leave you speak next week see you later bye