This Voice is Mine: the Unquiet Podcast

Chosen In Every Lifetime: Sibling Love, Institutionalisation and the Fight for Ewan with Ruby Peace

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Ruby describes herself first and foremost as the little sister of her big brother Ewan, who is profoundly autistic, non-speaking, and has a severe learning disability. In this episode of *This Voice Is Mine: The Unquiet Podcast*, Ruby joins Dr Emma Offord to talk about a devotion that has shaped her whole life, and a system that has repeatedly let her family down.

Ruby shares what it meant to lose her closest companion to residential school at seven, to learn to be let down, and to live inside a hypervigilance that never really switches off. She speaks with rare honesty about the 454 days Ewan spent in a psychiatric hospital, the fight to bring him home, and finding her own identity beyond being his shadow.

This is a conversation about love that carries fear, and fear that never once looks like resentment. A story for anyone who has ever had to hold two things true at once.

Follow Ruby on [her Instagram account here](https://www.instagram.com/ewenandme/).Find out more at divergentlife.co.uk. This Voice Is Mine: The Unquiet Podcast.

SPEAKER_03

Hi, this is Dr. Emma Offed, host of This Voice Is Mine, the Unquiet Podcast. For every neurodivergent mind that was masked, misread, or missed, where identity is reclaimed and the system gets named. This Voice is mine is a podcast for those who were told they were too much, too sensitive, too chaotic, too intense or not enough. Hosted by myself, Dr. Emma Offed, a clinical psychologist, neurodivergent woman, and unapologetic system disruptor. This podcast explores what happens when difference is pathologized and what becomes possible when we drop the shame, the script, and the medical model. Through stories, reflections, and conversations with people who were never meant to fit. This Voice is mine reclaims the truth of neurodivergent minds, bodies and ways of being. This is not about fixing or fitting in. It's about remembering who we are and unlearning everything they got wrong. Today's guest is someone whose story has stayed with me from the moment I first read it. Ruby describes herself first and foremost as the little sister of her big brother Ewen. Yuan is profoundly autistic, has a severe learning disability, is non-speaking, and lives with highly complex behaviours that have shaped the course of both of their lives. Ruby speaks openly about experiences many families are rarely given permission to talk about. Loving someone deeply whilst also being frightened, living through crisis, watching a sibling become institutionalized, carrying trauma, grief, responsibility, and hope, alongside fierce devotion. Alongside supporting Ewin, Ruby works with SAA and advocates for greater understanding of families living with profound disability. At the heart of her story is a relationship that has shaped every part of who she is. Ruby says she would choose you in in every lifetime. Ruby, welcome to the podcast. Hi, lovely to see you. Thank you so much for travelling in. So to the audience, we are in a heat wave in London. We are. And uh so far the updates are Ruby will get home, but we're having to watch because the cancellations are happening as we keep looking, and it's the same story for me as well. So um the podcast must go on, is our bit of a motto today. Um Ruby has really graciously still come in and is sitting here, and we're um we're gonna do our very best in this here.

SPEAKER_00

Our very best, absolutely.

SPEAKER_03

Thank you so much for being here for a start.

SPEAKER_00

Honestly, it's an honour to be here.

SPEAKER_03

It really means so much. Same, it really means a lot for you to be here. And I, you know, I like I said, uh was just captivated with your story straight away and and how you tell your story. Um, but for those who perhaps ha don't know you as well as I do, would you mind telling the listeners a little bit about yourself?

SPEAKER_00

Yeah, absolutely. So I'm Ruby, um, and my big brother Ewin is the person that has shaped my entire life. You know, he has uh led the path to everything in what I am. Um Ewan's three years older than me. Um he was diagnosed with autism two weeks before I was born, which was classic timing. Um and he has had a very rocky road. Um, you know, he has uh extremely complex behaviours, challenging behaviours, you know. Um he has a severe learning disability. Um and you know, we've been through uh quite a horrific time in the last five years, which is why I started sharing our story. Um because I was very, you know, I was very angry, I was betrayed, you know, by a system that was supposed to care and supposed to look after him, and I found that very difficult to process, especially you know, in my teenage years. Um so I started sharing our story, and I think a lot of people have fallen in love with Ewan and you know our relationship. Ewin's my best friend, and I'm his number one fan, and you know, talking about him is my favourite subject. So um, yeah, we are two P's and a pod, as a lot of people would say. Yeah, for sure.

SPEAKER_03

There's so much already that I want to ask you about all of that. But maybe if we start you know, right back at the beginning. So you say he was diagnosed two weeks before you were born?

SPEAKER_00

Two weeks before I was born.

SPEAKER_03

It collides, you know, for your parents. They probably already knew that there was if they're going through a diagnostic process that that might be the result. But don't they've also got a new baby about to go back. I can't even you know imagine what it was like for it was huge.

SPEAKER_00

It was it was uh well, I I you know I wasn't there, but I can imagine just how massive that was for them, and you know, they hadn't particularly noticed that Ewin was much different at that time, you know. I guess times were very different 24 years ago or 22 years ago, I guess. But a nurse his nursery teacher said, uh, I think there's maybe something going on here, you know. Ewan isn't interacting with his peers, and at first they kind of went down the hearing problem. Maybe he couldn't hear, and he did have glue ear, and he got grommets put in, and they went through all of that, and then a few weeks later it just hadn't made a difference. And um suddenly my mum, you know, I always think it's crazy that they never noticed he wasn't talking and stuff, but I think he was such an interactive and happy child that they just went by the the boys are slow, you know, slogan, and they're maybe a little bit behind. Um, but after he put his got his grommets in, I think my mum she did a bit of Googling, and basically this thing called autism came up, and she read the traits and she said, Yep, yep, yep, you know, every single one ticked a box that Ewan was a part of, and um she went to you know the diagnosis and they said what do you what do you think it is? She said, I I think it's autism, and they said, Yeah, I think you're probably right. And he went through, you know, the at that time there was a week's um like kind of centre he went to to be diagnosed. Um yeah, I went in for like five days every day and went through a diagnostic process. And at the end, they obviously said that Ewan was um autistic, and that was two weeks before I was born. And I think immediately my mum went to the hospital and said, You need to tell me if it's a boy or a girl. Um, because she hadn't originally wanted to find out, but at that time it was always said that boys were at more chance of being autistic, and she couldn't handle what what that could be, you know, what was going to come into her life, and it would I I imagine it was absolutely terrifying. Um but I came in and I mean the rest is pretty much history, you know. They managed to uh who God knows how, because they had two other kids as well, there's four of us, and you know, balancing all of that, uh especially with Ewan and what his life would then look like, they didn't know. And but my parents are just the most incredible people in on earth, and they um they've done a fantastic job of raising us for sure.

SPEAKER_03

Yeah, so you yes, you're born into a family where you have an autistic brother, and this is you know, you uh your other siblings were older, right? So they so they didn't maybe have that experience from from birth, but this is something that you have from birth, and um you know as you say you you've had some tough times, um, and more so recently over the last five years, and this is what's led you to to talk more about yeah, about you and about your relationship with him, what what struggles that he has as well, what delights that he brings to the world. Absolutely. Um I don't know where to start. Like, do we start there or do we talk a little bit more about you growing up with you know as a family? That would be lovely to hear about.

SPEAKER_00

Yes, absolutely. So, I mean, I have such a fond memory of me and you in childhood, like it was really quite something special, and I mean I was just his little shadow, you know what I mean? I I was obsessed with him. Like, I remember when I learned what the word autism meant, I went to school and I was like, my brother's got this really cool thing called autism, and I was obsessed with making presentations about it, and I wanted everyone to know about my brother because I thought he was awesome, but I thought he was so cool, and um I think I probably a lot of people ask if when I realized he was different, but because I didn't, I genuinely did not know anything else, you know. Okay, Ewan's not talking, but Ewan's never talked, and I just you know, I just adapted to exactly who he was, and uh it's funny because Ewan has a lot of triggers these days, and um a lot of them would be exactly who I was to him when I was younger, you know. I was obsessive, I was all over him, I was talking too much, and I've always been an exception to the rules for Ewan. You know, he just took on me as a little sister. Um, we've never had that, you know, there's never been a difficulty between us in our relationship. We have just always seemed to get along so well, and that's what I mean when I say there's so many fond memories. Like, you know, I remember playing games with Ewan, and he didn't know we were playing a game, but he was the shop assistant, or you know, we play hide and seek, and he didn't know he was hiding, but I'm you know, I'm gonna go and try and find him. And I made I made of what I made life of what we had, and um Ewan was just he just meant everything to me, and it yeah, I you know I would always you know I always talk about it fondly. Um but I think when he was about the age of eight, we started experiencing more difficult behaviours and um meltdowns and self-indurous behaviour. You know, you'd look around the house and there'd be a hole in the wall from his head there or from his foot there, and um kind of things started falling away from our life, um like after school clubs, and yeah, um that was when his first carer, when when he turned out, she said, I can't I just can't do it anymore. You know, she was in tears because uh everyone loved Ewan, but and it goes for us too, we just couldn't meet his needs anymore. We were we were getting it wrong. Um and his his special needs school, which is you know it was made for complex care, they said that you know we we can't meet him anymore either.

SPEAKER_03

And you know, then wow, that must have been devastating all that the kids.

SPEAKER_00

And after it all happened at the same time, we lost everyone, and my parents had to consider well what do we do now? And Ewin went to residential school when he was 10 years old, and um that's obviously a huge decision for my parents to make. Yeah, but we always talk about it, you know, it wasn't about the fact that they couldn't cope or that it they couldn't, you know, they couldn't manage his behaviour. Ewan, without saying a word, got on his knees and said, I can't I can't cope, you know, I can't do this. And we've always had Ewan's best interests at heart. Yeah, and keeping him at home was going to be letting him down. Yeah, you know, we were gonna be failing if we kept him at home. So he went into residential school and it absolutely transformed his life. He it did so much for him, you know. He became toilet trained, he learned how to use a knife and fork, he let his communication came on leaps and bounds, and he came home every weekend, and we had you know I mean we had challenging weekends, but we had lovely weekends, and he needed that structure of you know, teachers at this time, every day, and walking to school at this time. Whereas when he was at home, you know, it was mum between eight and nine, school then, taxi there, career there, after school club there, Saturday club there, and he just couldn't he couldn't cope with that lack of structure. And yeah, I think uh as soon as you say I was in residential at 10, that's you know, that's a young age to be going to do something like that. But we always just make you know, we had to do what was best for you. And and uh it broke all of our hearts, but you know, sometimes loving someone is you know, you have to make the hardest decisions ever, you know, decisions that go against what you feel love should be. You don't ever feel like that about your child, that you're not gonna have them at home at the age of 10. Like that's never a future that you imagine. And I I found that difficult. I've just remember him not being there anymore, and I was only seven, and you know, my best friend who I just I just adored you in, and I loved coming home from school, and we went to after school club together, and I just loved being you know, coexisting together. I just loved that, and it was all of a sudden he wasn't there anymore, and I always had this I hated feeling like an only child because I knew I wasn't an only child, and Sam and Imogen, our big brother and sister, they're my dad's kids, so you know they're half siblings, so they came home, you know, every couple weekends. But I was on my own, and I I didn't like that. I found that and I I've I felt resentment towards my parents in that way. That and I hate to say that now, but I just thought, I'm not, but I'm not on my own, my brother's supposed to be with me, you know. My siblings are supposed to be here. I couldn't make sense of the fact that he had just essentially disappeared, and like every part of my life was now different. You're coming home to a quiet home. Yes, you know, you're coming home to a playroom that's not got you in, like bouncing on a yoga ball or sitting on the table or standing on the sofa, like it's just silence, and it's yeah, how do you you have to learn how to keep yourself company without someone that has you know been there forever, and I find that you know very difficult um to process and get through.

SPEAKER_03

I can really hear that because just thinking what you were saying there about how close you were to him and how intertwined you were, and it you know, you you were in tune even if you didn't like you know play the same game in the same way, you were still managing to do it and enjoying each other's company, and yes, things got difficult. I'm sure that impacted you at the time as well.

SPEAKER_00

But yeah, absolutely. You learned to have to adapt, you know, uh promised trips to the park or you know, birthday parties that you've been looking forward to. Like you had to learn, yeah, I had to learn to be let down, you know, and that is a hard thing for someone, you know, five, six, seven years old to learn. Like uh especially when you're looking at your friends and their siblings who are all you know at parties together, you know, or going going to the theme park all together, like those opportunities were not available for me. And you you then realise that your life is different, you know, you are you are different and it doesn't look the same. Um and that yeah, but that was very I mean I don't look back on that as a difficult time, but I know that you know that would have been hard to accept. But I remember I was speaking to someone lately, they said that they'd taken you and I it was a career of his and they'd come back and my mum had promised we'd go to the park. Anyway, when they took you in back, you and I was really distressed and unhappy, and my mum just said, Ruby, we're not gonna be able to go to the park, and I just went, okay. And you know, walked away, and I would have been what five. Whereas that could have maybe led to you know a tantrum, or I just took I just took those things on the chin because I learned how to be let down.

SPEAKER_03

Um and I wonder I just wonder if it's also something about you because you're pretty exceptional, if you don't mind me saying, in terms of you know how you talk about you and how you've you know been been part his carer throughout the years, how you've accepted being let down, you know, the work that you do now, you know, to me there's something that shines out of you that you are you you know you seem a very empathic and tuned human being where you know not not every sibling would experience all of that in the same way or take it on their chin.

SPEAKER_00

Yeah, absolutely. I we we speak about that sometimes because I've met other siblings and even Ewan and I siblings, you know, we're not their relationship with Ewan's not the same as my relationship with Ewan. And um it doesn't look the same. And I mean, you know, you go, is it nature or nurture, or um, you know, I'm always so adamant that Ewan shaped me like that, but you know, as as we've just said, you know, not everyone's the same, and I don't know what happened, I don't know what stars aligned, but um yeah, Ewan and I have just been it is such a unique relationship, and I don't think I really realised that until I started being told it, you know, in the recent years that it is unique because you know, I think I did assume that well every sibling, you know, gets him showered or would shave him or get him dressed or do his medication, but not every sibling does that at all, you know what I mean? But that's something I've always been I've always stepped up and done, you know. I think people get concerned about my parents forcing me to look after you in, or you know, having me so that I could look after you in. But it's always been, oh, can I can I do this bit today? Can I can I spread his pancakes for him this morning? And yeah, that has just been my natural intuition forever is to step up into that role, and when I'm not doing that role, I feel half of the human that I am, and yeah, it's a strange concept, really.

SPEAKER_03

Then I'm just thinking, how does that seven-year-old, you know, cope with that or make sense of it? Because seven's young, full start, but to have that relationship and then to to get your head around residential care for a brother. That I mean they're big words and they're big concepts for and for a seven-year-old.

SPEAKER_00

Absolutely massive, and also I think seeing that I've seeing people fall away and seeing him being let down. Like I used to go to a school and pick him up some days, and oh now that school can't can't look after Ewan, or you know, his carers that were absolutely phenomenal, and there's n there's there's zero um, you know, I don't have any bad feelings towards them, but I saw, oh yeah, Ewan's even too it's too tough for them now. And my parents, he's too tough for them. You know what I mean? Like all of us, I watched people fall away from my brother's life, and um even at seven, you're stuck there thinking, well, what does that make that what's that what's my future like now? Yeah. And I don't think any seven-year-old thinking that far ahead or worrying about those kind of things, but you I was there, yeah, I was in that position at that age.

SPEAKER_03

And was there a point where it started to make sense or where it became more this is the way of life?

SPEAKER_00

I think I think it took years, I think it took years, I really do. But I know that, you know, by the age of 10 and 11, I'd really gotten used to the idea that Ewan came home every weekend, and you know, Monday to Friday were I mean, I didn't really know what that looked like for me, but Monday to Friday Ewan wasn't there and I did like Brownies after school, I did swimming on a Wednesday, and I got through my week by thinking what's on at school today or what's on after school today, and I I got through it by, you know, ticking it off and waiting for him to come home on a Friday. And yeah, I mean uh I don't really I don't really know how I how I managed it or how I got through it, but it did become it did become normal and I did I did get used to it and it meant that I had it did mean I had more opportunities to see friends and have sleepovers and you know I had much more time with my mum. Um so I I could also I think when I got to about 10 I could see that that was you know that it made sense to me now and also that you know Ewan was coming home as such a a happy lad and you know he was he was he'd learnt new things and I was you know we were celebrating that now he sat at the dinner table with a knife and fork and um I could see how much that was a benefit to him and you know the years on after that, you know, Ewan was in residential care from till he was 18, you know, it definitely just became you know that that was our normal now. Um and that doesn't mean that I always felt okay about it, but I knew that it wasn't gonna change and um I had to accept that that was the best thing for Ewan.

SPEAKER_03

Yeah, yeah. And when he would come home for the weekends, I mean it sounds like you would continue to spend a lot of time with him. And would you give your weekend like I'm just imagining a a a young developing teen eventually where you know staying home every weekend might not be.

SPEAKER_00

Yeah, I did like I I d I stayed home every weekend and I, you know, we did the same thing every Saturday. We went to Tesco and the specific cafe, and that routine never changed. And I think in when I became a teenager, sometimes I did think, oh, again, like we're doing this again. Like we're like there just wasn't experience outside of it, and um you are thinking, you know, it was Groundhog Day a lot of the time. But in sense of my relationship with Ewan, I wanted to spend that time with him, you know. I w that those weekends I was excited to see him, and I was excited to, you know, be part of his routines and take him swimming and you know, do everything that I felt like it wasn't I felt like I needed to do, but I wanted to do and I it was also natural to me that I just I I just adapted to Ewan. But I think looking back now I can see that I probably missed out on, you know, quite a bit of things. Not necessarily because uh I couldn't go, but I felt very uh uh I felt my safest place was with Ewin and was in that routine of every weekend. And um I d I because he was only home on the weekend, I didn't want to miss. That time with him because you know it felt fragile, and um Ewan's got a shortened lifespan, so um I think you even get into bits like that, and I I dabble I I battle with that a lot now when I don't spend as much time with Ewan, um like regretting am I gonna regret the time that I've missed with him? And yeah, though again, huge things to think about when you're just a teenager, but really big things to think about. It was something that was there for sure.

SPEAKER_03

So, what did these weekends look like? You've described some elements, some parts that might have felt like Groundhog Day. What was it like for Ewan to come out of residential, his his residential care, and then to come back home? Was that smooth? Was that challenging? Was it mixed?

SPEAKER_00

It was really quite smooth, especially on the Friday. You know, coming home was very easy for him because home has always been his safest place, his happiest place, and there was never ever an issue about him coming home. Um, he'd come in the door and he'd stand in like the hallway and he'd unpack his bag. So in the hallway. Yeah, in the hallway, and it would maybe take him over an hour some days. He would take his medication box out, his iPad out, his charger out, and he'd pass it, pass it to me or my mum and my dad, and he'd go back and forth from the kitchen to the hallway, kitchen, hallway, and he'd unpack his entire bag. And maybe that was his way of transitioning, in fact. Like now that I look back, that maybe that was how he processed. Okay, yeah, now I'm here passing this and passing this and passing this. But it's it's always been so smooth. And Ewan, you know, he loves getting into his pajamas and getting on the sofa, and he's got his iPad, he loves his home cooked meals by his dad, he's absolutely loves loves dad's cooking. Yeah, Saturday was always up, Tesco, and then a garden centre for lunch. And Sundays was always swimming, um, and sometimes it changed, you know, for a long time it was Chiquitos in the cinema, and we all hate to Chiquitos. We all hate you have to eat them. Yeah, my least favourite food in the world is Mexican food. And um so why would you have to eat them?

SPEAKER_03

Because it would it just kind of kept things. Yeah, it just kept things smooth.

SPEAKER_00

If you don't have something on at your plate, he's thinking, Well, am I allowed to eat my meal? You know, like it doesn't feel right for him. Yeah, so you'd have to eat something, and there'd be times we'd take him into the the shopping centre and we'd try and lead him towards Z, and he would just and Ewan's never been a pointer, but he'd just start going, you know, he he went it was pointing and pointing, and we knew he wanted Chequitos, and those years were yeah, I mean, there's a joke amongst our family that just Chiquitos shut down. And to be honest, like it does break your heart thinking about Ewan, but for all of us, we're just like, thank God, because we spent so much time in Chaquitos, yeah, with his he would wear the sombrero hat, and like it's just fajitas, he loves fajitas, and that was you know, so our but they were they were very, very samey, samey every weekend, and yeah, that become that becomes exhausting. Um I remember like my 16th birthday, I was really excited for it, and it was spent Tesco and the garden centre, the same thing we'd done for the last 12 years of my life, and yeah, I I remember thinking, Oh, could it have been something different today? Um, you do you like I I always vouch for the fact that I've never felt resentful towards you and or my parents, but it was definitely days where I thought, oh my god, not again. Yeah, yeah, you know.

SPEAKER_03

Because that's natural, isn't it? Yeah, 100%. You didn't have to blame somebody and it doesn't have to be someone's fault to feel the impact of repetition, yeah. And repetition that has been going on for a long time during a special event like your 16th, but um also that you don't particularly enjoy.

SPEAKER_00

Yeah, no, no, and Ewan used to drag these things out, like he'd sit in this garnshire for three hours, like eating one bean at a time from his sausage beans and chips. You know, he used to absolutely drag and drag and drag, and you would sit there just wishing for it to be over. And because of his because of his rigidness and his autism, like you you're not allowed to make certain sounds, and you you know you're sitting in a position and then you're thinking about oh, there's a baby over there, or there's someone coughing over there, and that's exhausting to be in in an atmosphere where you're constantly thinking, oh gosh, is that gonna is that gonna upset him now? But we can't move because we've got to stay here until he's finished every bit of his play, and yeah, it was yeah, it it was a lot, but there was also so much joy, and when you look back on those things, we really do find it funny. Like those days we had to sit in Chiquitos, or you know, we go to the cinema and see the same movie, like you know, for a month. It'd be like and my dad saw SpongeBob, I think, like seven times, and he hated SpongeBob, but you know, you have to go, and yeah, you just have we would just he it was very UN led, so um yeah, you you have to get very used to that repetition, but as I say, it's very normal to hate repetition, yeah.

SPEAKER_03

Of course it is, and you know what beautiful safety that you were able to give him. Like I'm just hearing you say not moving and not saying so and no not making sounds, so being s really super aware of his needs, and I guess you would have to suppress your own, wouldn't you, in that situation? Like you might want to move and you might have something to say, you might be feeling really bored, yeah, and you know that that's gonna have severe consequences perhaps if you if you don't do that, and it's not anyone's fault, but that's those are the facts and circumstances, aren't they?

SPEAKER_00

A hundred percent, yeah, and yeah, that's that's what it is. I mean, you become so used to it, but really I think you know, that sometimes it'll get to the afternoon with you, and I think I need to lie down, like just the mental strain of not wanting it to go wrong because for you, and when it goes wrong, it goes so catastrophically wrong, and the outcome can be detrimental, and it has been detrimental. Yeah, so our lives have been preventative measures, you know. You take every preventative measure to make sure that it doesn't get to that point, yeah. And that can leave your you know, that can lead for sometimes a boring, you know, rep repetitive and you know, long slog of a life. And um yeah, that's that's hard to accept, I think, especially when I was younger. Um, but you know, even now we're very similar, like it's never really changed, you know. Ewan changed in a lot of ways, but in a lot of ways he hasn't. And um you are constantly on eggshells. I mean, even when I'm not here, I'm thinking, is his career getting it right today? Like, have they made the right decision today? You carry that all the time, and even when I'm sitting somewhere where Ewan's a hundred miles away, if someone coughs, like I my heart will skip a beat because I I'm thinking like it's that trauma response, I think. Because I I know when a so when someone's coughed before, our life, you know, that day has tipped on its head, and um you become so hyper-vigilant to everything, yeah, and that's exhausting.

SPEAKER_03

Yeah, yeah. So and you're no longer in control of that when he's not in your company. And I I would imagine even when you know you have been the one caring for him directly and he's with you, like things just go wrong in life, don't they? Like people cough and you can't suppress all your coughs, so it's a big ask, isn't it? Yeah, so that hypervigilance, yeah.

SPEAKER_00

Oh, uh that the coughing thing has been a nightmare, it honestly has been a nightmare, and it's kind of like when new carers come in, I say, Oh, there's the biggest rules you can't cough. And I think they probably think you must be joking. Do you know what I mean? I said, No, you've got to go outside, you've shut the door and cough. And yeah, and even even family members, it becomes awkward when you've got like your auntie and uncle and your cousins sitting around, and you've got to say, Oh, by the way, guys, like please don't cough, or you know, if you've gotten 15 minutes into the conversation and you've forgotten to tell them, you're thinking, Oh how do I now slide in? Don't clear your throat, don't cough, don't sneeze, like, because that's gonna that'll that's gonna ruin our day. Yeah, but it's not just ruin our day, like it's it's it's the repercussions of what Ewan goes through when he gets into a zone like that. But as you say, like people make mistakes, you know, you forget to tell someone, you know, you literally choke on your food, you know. It's but it's yeah, it's like it's like imprisonment of you know, and that is so hard to manage, especially on you know uh a 13-hour shift with Ewan for his carers or you know, being in a four-hour car journey with him, you know, it is hard to expect, um but it's also yeah what he needs, yeah, what he needs. So I mean I've learned I don't cough anymore. I literally don't cough unless like I I I've my body is trained not to cough, and I don't know how I've done it, but I just uh I know from the tr that is a trauma response. I know every possibility, everything to do to avoid it at all costs, and yeah, you know, Ewan has trained me to do that.

SPEAKER_03

Yeah, yeah. And and you know, we talked about how this may have shaped you, this relationship, this you know, this kind of family lifestyle, and you're you're all in love with him and s in support of him, and there is still the impact, like you say, that that hyper-vigilance, the protection for of him, like feeling I guess responsible for him and his vulnerability that that uh you know a hyper-vigilant place to be is your nervous system alert all the time to what can go wrong, and then things can go wrong, and then there's the trauma of that as well, isn't there? Absolutely, yeah, okay.

SPEAKER_00

Yeah, I I mean when I was ten years old I was diagnosed with an anxiety disorder, and I've spoken to my mum before, we think would have had it if I wasn't, you know, in a in a life with Ewin, you know. I mean it could be genetic, you know, there's lots of different things, but I would say a lot of my anxiety is centered around Ewan. And you know, even if he's not directly there, you know, it is something I carry so heavily um because of the impact Ewan has on my life and because of our relationship. Um and it's yeah, it's learning a new nervous system, and you're not just thinking about your nervous system and your anxiety, you're thinking about his, but I'm also thinking about my dad's because I can see his, you know, his shoulders up to his ears now, yeah. Or I can see my mum biting her nails. Like you have so many things to think about, and that is yeah, like that's it's really, really tough, and so many people to try and keep calm, and especially when it's I I always describe you as a volcano, you know, it's like how do you keep it from erupting? Yes, yeah. When you've got so many factors, you know, it's so hard to do, and um you just yeah, you become you have to train yourself into something else, and yeah, having anxiety has made that incredibly difficult over the years for sure.

SPEAKER_03

And y so even when when perhaps things are smooth and and he's you know being well looked after and in a happy place, that hypervigilance and anxiety can continue.

SPEAKER_00

In fact, you're thinking what's gonna when is it gonna go wrong? Yeah, yeah. You will sit and think, when's it gonna go wrong? Because there's been so many times in our life where we've thought, oh, okay, we're in a good place now. And it just takes, you know, it can take one day. And I always say this too, but Ewin is a mystery. Like you think you figured it out and then you haven't. Like he isn't a total enigma. Like you you think you've got it and you don't, and even you know, 24 years in, we you know, we know Ewin the best as we know him today, but tomorrow we you know it might have changed, and that's a hard thing to keep adapting and changing and figuring out. You have to figure it out, you know, you have to be a detective to see well what's going wrong here, and yeah, that's a huge difficulty with Ewan in the fact that he is completely non-verbal.

SPEAKER_03

Yeah, so you can't outright ask him and he can't outright tell you, and so you're always trying to work it out.

SPEAKER_00

Yeah, like at the moment, um Ewan had a blood test a few weeks ago and it saw that it showed that he had an infection. We have absolutely no idea where that infection is. You know, you treat him with antibiotics, we'll go back again and get his blood stun. But we have absolutely no like what's hurt we don't know what could be hurting him. Do you know what I mean? What if he has a toothache or you know, uh you just don't know and and his with his how high UN's pain threshold is as well. Like you are constantly his behaviours might be different, but he's never upset or looks like he's in pain because he is um so resilient and so strong, and um yeah, like it's things like that. Like you have to go through the trauma of a blood test to find out if there's something internally going on, and you know that's the biggest risk with people with learning disabilities, and you know, you either don't ever find out and it's too late once you do, or even when you do find out about you know something that might be wrong, are they gonna cope with the treatment? And that's something you're constantly thinking about with you and yeah, yeah.

SPEAKER_03

So there's so much to anticipate or think what could go wrong, what do I need to think of in advance to prevent that happening? Like, how can I maybe read him to understand, you know, where that pain might be?

SPEAKER_00

Like that switching off sounds like a very impossible like sometimes I think I'm gonna have I'm gonna have to get a plane home just so I can be in that room and figure out what's going on because a lot of the time you think, well, no one knows him as best as me. And I'll get on a plane if I need to figure out what's wrong with him right now, you know, what what's made his day like that? And how do you balance that with also trying to live your own life? You know, you can't just get on a plane and figure try and figure it out at the drop of a hat, you know, life isn't as easy as that.

SPEAKER_03

And even if you could, would an employer uh understand that? Would you know a friend understand that? Would someone you've made a commitment to understand that? You've got to let other people down sometimes if you do want to find out.

SPEAKER_00

You know, as I said before, I've been used to getting let down, but I've also had to get used to letting other people down, and that is something I cannot cope with. I find that, you know, I've been a chronic people pleaser, and they say that is actually very common for siblings because you know, your whole life you're trying to make life easier for people, right? Yeah, um, so I've also you know I find that impossible too, is letting people down. But when it's at the cost of you, in you know, you make a lot of tough decisions, and there's been plenty of times in my life where I've let people down, and it's probably had a huge impact on you know, friendships, and you know, I've had to say no so many times to parties or to outings with my friends that eventually they don't invite you anymore. And you know, you get it in some ways, like if they're never showing up, but then in other ways I'm like, but I am here and you know invites still exist. Um but yeah, like yeah, you that that that's a really that's been really hard is learning to be let down, but also learning that you have to let down in order for you and to you know thrive sometimes.

SPEAKER_03

Um have you had the experience where somebody close to you has not understood and and has I would say I mean I I loved my friends at secondary school, but they they didn't know anything about our lives really.

SPEAKER_00

And I had a couple that asked and we'd visit like they saw they met you in and you and loved them, but no one really got it. And I remember when he was he was institutionalized, I was in school, and I was just I was sitting around the table with my friends and they were all talking about what they were gonna do on the weekend, like this this party that was happening on the weekend, and I was just thinking our life our lives are worlds apart. Yeah, yeah, they're worlds apart, and that's not their fault in many ways, but in you know, in other ways I've never felt so misunderstood, or you know, I I've always gravitated towards adults, you know, in my life, you know, teachers were where I confided in and who I spoke to and who I spent break with or lunch with when it was too much, because I actually found it harder, you know, you had to mask in a way to be around people my age because I had to think, okay, well what are they, what's I've run into now? And yes, because my life was not there. I wasn't I didn't know the trends, I didn't know I didn't know about the party on the weekend, like I didn't know who's dating who and or who's upset with who, like those kind of things like it were so minute in my world. Yeah, but I also didn't want to lose friendships, you know, of people that I loved and I loved spending time with. But yeah, I I would say people didn't understand. I'd say people didn't understand then, and I probably needed people to understand the most then.

SPEAKER_03

Of course. I mean we all need our social scaffolding in some form, and it can feel so lonely to be misunderstood, or you know, d to have all of this happening underneath, you know, the to not be able to go into the you know, the depths of our actual experience with our friends. Like that's what friends are for, is to be able to go deep, isn't it? So when you know that's that's hard to do.

SPEAKER_00

It is, but and I also think, you know, I felt I wasn't always in a position to be able to tell them what to do because I was live what I was going through, because I was living through it and I was surviving it myself. So you know, trying to explain to someone, well, this is what this means, and actually I don't know what this bit means, and I don't know how long he's gonna be there, and you know like that's a very, very hard concept to to try and manage, especially when you're in, you know, you're 17 years old, and you know, life life's supposed to be so exciting then and uh I missed out on I didn't I couldn't go on the girls' holiday and things, you know, at the end of school when we all finished our A levels and uh you know that that is that's and that comes with not just you and being in hospital, but the fact that I was in no mental state to be able to cope with what you know a holiday would, you know, consist of and the that the weight I would carry if I was there and when Ewan's at home and um yeah I look back on those years and I know that I've I missed out on a lot and I said no a lot. Um and you know, I I try not to live with regrets, but you know, there's probably times where I wish I'd just, you know, said yes and done things because you know me being at home wasn't gonna change how life was treating you in hospital and um but yeah, really, really hard time.

SPEAKER_03

I can I can really see that, really see that, really understand that. And you know, I think what's also so incredible about you is that you know it hasn't like you say, you don't talk about your family or about you in with resentment. You you can and I think it's important that you're able to say this I did miss out on this and this was boring, and name those feelings and and you know, maybe you know, parts of your life you might have grieved and not not having the full experience, but that doesn't stop you, you know, from appreciating and you know um you know not holding resentment, but they they can coexist. You don't it's not one or the other, is it?

SPEAKER_00

No, it's not one or the other, and I think I've learnt that more as an adult that two things can exist at once, especially when it comes to a life as complex as you in.

SPEAKER_03

Yeah, you know, yeah, a hundred percent. Ruby at the at the beginning you mentioned something about um systems letting you down. So so far we've we've heard that that um the scaffolding fell away, but I haven't heard about uh so much about the system that has let you down. What what happened? Are you able to tell us about that?

SPEAKER_00

Yeah, absolutely. So about um 2021, Ewan um he was in a residential placement post-school, so it was now an adult residential placement, and um he had started displaying some behaviour that we hadn't seen, you know, to that extent or that often. Um he was very unsettled. Um it became apparent that he'd made himself blind in his eye from self-indust behaviour, uh head banging, um and his residential placement that he'd been at for about 18 months said that they couldn't um they couldn't they couldn't do it anymore and they terminated his placement. And it turned out that um the way that they'd ran this placement um it was quite spiritualistic and in in a very beautiful way, but they kind of had their way and Ewan didn't fit into their way. Um you know, they took away his communication systems, his talker, you know, without telling us. Um I can't get my head around that. I and we still can't get our head around it. I mean, you know, people that we trusted, you know, that is Ewan's voice. That is the only reason that he wakes up and knows what's going on each day. Yeah. And they took that away, I think, in wanting to try and get him to f fit into their kind of way, or was it gonna now help if he didn't have you know pictorial communication that he was now gonna understand verbal better? I I don't know. I mean, it is something that you just we've never been able to really get to the bottom to. Um, but they'd they'd taken away his voice, and then when he displayed challenging behaviour, they said, no, we can't deal with that. And that was a result of what they had done. And yeah, we had to take Ewan home because placements are so short, you know. I don't place there's not many places for people as complex as you in um in community. And we had to take him home, and we thought, okay, this will be when we can heal things here, like home. Has always been you in the safest place, and being with his mum and dad and his sister, like this will get better because we'd lost so much of you, and he was now, you know, he could now only see out of one eye, but he also had behaviours we'd never seen before, he was in awful condition, his face was always, you know, really injured, and um he was coming for us in ways we'd never seen before. Um that must have been terrifying. Yeah, it was terrifying, it was really terrifying, and because we had hopes that we would make it better and we didn't, we had never felt a letdown like it. You know, Ewin regressed and regressed and deteriorated and deteriorated every single day. He was so unhappy. We never saw him smile, he would never he he stopped stimming for I would say around a year because he didn't have anything that fulfilled that excitement in his life anymore. And we'd literally lost who he was. We couldn't figure out what he needed, we couldn't figure out what was upsetting him all the time, and he was hurt he he hurt my mum really quite badly, and we said, you know, we can't do we can't do this anymore, we're failing him. You know, this isn't this isn't you know, we'd go on and we'd try forever, but the person that is suffering is Ewin, and we're not gonna let him suffer anymore, and we said help. Um, and he went into emergency respite. But whilst he was there, I think a couple days in, he had a meltdown. That would have been absolutely petrifying, and I can absolutely, you know, I know that. But they phoned the police, and um the police took him away that night and took him into the psychiatric hospital. And they phoned my mum the next oh no, I think they phoned her that night, and they said, you know, Ewan's been taken into hospital, and they said, but it'll just you'll just be for the weekend, you know, it won't be any longer than the weekend. And Ewan was in there for 454 days.

SPEAKER_03

Um that's heartbreaking.

SPEAKER_00

Yeah, and you read about you read about these horror stories, you never think they're gonna happen to you, never think they're gonna happen to you. And you also read about it happening decades ago. You know, you didn't think people were still getting locked up for being autistic.

SPEAKER_02

Yeah.

SPEAKER_00

Um, and that's what it was. You know, Yoon was not mentally unwell. He was not, you know, he was not experiencing, you know, psychiatric problems, he didn't have mental health issues. He was autistic and he had a severe learning disability, and he was in crisis. And um, you know, everyone in the hospital, the hospital were phenomenal with him. They were phenomenal, they didn't know him, they got it wrong so many times, they had to figure him out on their own. Um, but his consultant and his team, everyone agreed he needed to be out of the hospital. He couldn't be there. But once you're under the Mental Health Act, it is like a prison. Like it is so hard to get out of. Yeah, it is impossible, and it's down to social work to figure out a placement. Yeah, because Ewan wasn't gonna be safe coming home. We couldn't take him home because we were failing him just as much as you know the residential placement was, or just as much as the hospital was getting it wrong. We were we weren't gonna be able to do it. We were gonna get it wrong, and it was gonna cause further implications. So you are fighting and fighting for a community, a placement, you know, a solution for Ewan to have, you know, somewhere to live and somewhere to live his life because he deserves a life as much as anyone else. And you're fighting and you're fighting and you're fighting, and that took nearly 18 months for Ewan to get out, and that meant 18 months of a psychiatric ward, and you know, frosted windows that he couldn't see out of, and you know, um nurses he'd never met, and 24 observation all the time, and you know, I can't I hate thinking about him in there.

SPEAKER_03

I was just I was having the same thought in my head that must have been so hard for you and your family to think of him in that institution under those conditions, knowing that they are not restorative. Yes, they are crisis conditions where you keep someone physically safe from hurting themselves, potentially, but they are not they are not safe in psychologically nurturing relationally, they're not providing that, are they?

SPEAKER_00

I remember the first time we went in to see you and into the hospital, and he'd we hadn't been able to see we weren't allowed to see him for the first month that he was in there. And I th I mean when you think about it, he'd been taken in in the middle of the night to this place. He doesn't know what a hospital is, he doesn't know a single person around him. He doesn't know what that bed is or what that sofa is, he does not know where he is or what he is or if he's ever gonna see his family again. Has he been abandoned? Like he has absolutely no idea. And we went in to visit him, and I remember walking into the the psychiatric hospital and I just you know, seeing all these patients who were genuinely, you know, mentally unwell and you know going through terrifying experiences. And I was thinking, my my little big brother's in here, and he's sitting up there watching Ballomori, and like he doesn't belong in here, you know. He this is not, you know, this isn't for you. And we walked onto the ward, and I'm I broke down and I said, I can't I can't see him. I can't see him because you know they had prepared us, you know, he he doesn't look great and he's not in a good condition, you know. He just his beard was all grown out and his face was all bruised and swollen, and his eyes were basically sealed shut, and his hair was long, and he he was wearing a t-shirt that was another patient's, like it wasn't his, and you know, you're just looking at and uh I was like, I can't, I can't look, I can't see him. I cannot see him. I was I was in pieces, and my mum said eventually I managed to calm down and we went in to see him, and the hardest thing in the world was seeing him there. He lit up, he started rocking, and he was humming. The first time we'd heard his hum in so long, um, he was so happy to see us. And we can't explain, but we also had to find a way to s to tell Ewan that he you know we were visiting, he wasn't coming home. Yeah, and Ewan has never seen us in a place that he's been in, and it not meant that he's coming home. Right. So he's never understood visiting, um, and we had to stand up and leave him there, and that was I mean, he was probably thinking, Well, where are my shoes? You know, where's my backpack? Yeah. You're like, you're not taking me out. And thinking of what was going through his head there, like I I often can't I can't go there because I just think it must have been it. Well, it was the most horrific feeling for us, and I can't imagine how Ewan felt. Like, you know, you get caught, he must have felt so abandoned. And I don't know if Ewan can experience those feelings in the likelihood he he can't, but you still you've you know you've abandoned him in there and you can't take him home. And yeah, what an awful time, you know, that was. And it went on and on and on for you know, that weekend turned into nearly a year and a half, and um yeah, it was absolutely horrific.

SPEAKER_03

I'm so sorry you all went through that, you know, just right from his communication device being taken away, just that cascade of accumulation and uh you know, and escalation of distress, and then I guess you must have all felt such a sense of helplessness at so many different points because you can't make this change quickly. You can't make him feel safe and better quickly, can you? So you've all enduring these like really heavy and you know, you you've been used to being able to do things and read the situation and make it okay so many times.

SPEAKER_00

He was under the care of the hospital and they made the decisions, and you know, so they made the decisions. We don't think you should be coming to see Europe for a while, and that's so hard to hear, but also to accept, and you and you do accept it, you do have to learn to accept it because you have to trust that these professionals know, you know, they know what they're talking about, and but how hard that is to actually accept and actually live with, you know, you'd be sitting at home and or you know, the amount of sleepless nights you had thinking about him in there, and they would phone an update and he'd go in sometimes, it'd be twelve o'clock and they'd say, Oh we've had to restrain him twenty times already this morning. And like, you know, that changed Ewan as a person. You know, Ewan is in a very okay place now, but he will never be who he was before. He will never ever become, you know, he will never be the version of Ewan he was before that. He will carry that trauma forever. And you know, things as simple as as soon as he's in meltdown, now he's looking for someone to restrain him and hold him back, you know, four or five people to take each limb. And like how awful that that's what he expects as soon as he gets upset. Or, you know, they might have alarms that went off, but you know, all he had to do was make one noise and an alarm would go off and everyone would come running in, and you know, he'd be put on it was called a safety pod and he'd be restrained and um it was all things for his safety because you know our biggest concern is Ewan losing the sight in his other eye because his life would be totally destroyed if he didn't have any sight at all. I mean I don't I just can't even imagine. So it's always been about keeping that other eye safe, but you know, at what cost, you know, the trauma that he went through to do that. Yeah, it's just yeah, really awful.

SPEAKER_02

Yeah.

SPEAKER_03

And how is Ewin now? Where is he? What's how does life look for him at the moment?

SPEAKER_00

So we were very lucky, although I say maybe not luck, because it was very much deserved. This is what he deserved, and it's what every, you know, person in similar positions to Ewan deserves. But he the council bought him a house and they employed a care provider. So um Ewan supported on a three-to-one basis during the day, which means three carers um to him, and then overnight he has two waking night staff overnight. Um, and he's in his own home, it's decorated for Ewan, it's got a sensory room, an activity room, his bedroom, his living room, his he's got a back garden, it's in the town that we grew up in. Um and he's supported by some absolutely phenomenal people and support workers. But that took a lot of time to get to. You know, when Ewan first moved into the house, we had a pretty awful time. And you know, he started with a team of 20 carers, and by the end of the first week, I think about 14 of them had left.

SPEAKER_02

Wow.

SPEAKER_00

And I think that's something that a lot of people don't talk about, but maybe they don't actually experience something we've experienced a lot with Ewing is rejection, and you know, people don't come back, you know, they do one shift with him and they don't come back, or they read his file and they say no. And that's it we always say it takes a very special person to work with viewing, but I don't think some people realise just how special a person it takes. Yeah, but he is um I I I describe now like before hospital and all of this breakdown, you know, you'd have a meltdown once every four months or something. And now you can't get through a day without two, I would say. Do you know what I mean? Yes, yeah. And that's our new normal, and that's him at his best now. So you say, Oh yeah, well he's good, but really that's not good that's not well, it's not good in comparison to what he used to be. You know, you feel sad that he is experiencing something every day.

SPEAKER_03

Of course you would, and yeah, and you've got and you have this story where you you don't have full repair because you don't know what happened and why that decision was made, and that is so hard, isn't it? Because you know you were must have lots of what ifs about you know that point in time and and where you're at now. It's wonderful that he you know he's got these great carried, but I guess.

SPEAKER_00

What if this yeah, you do. I think what ifs is the best way to describe it, and also how how secure that looks like, you know, the government cuts off all the time. You just don't know. Yeah, he's in such a vulnerable position. Um and you just don't know what his future's gonna look like or what our future's gonna look like. And yeah, how did we get here and what did he go through to get here? This should have if he'd gone straight from school into this, you know, life could have been so different, you know. But we've you know, mm one step forward, three steps back, I'd say, you know, our constant life is and those three steps back get harder and harder every single time with how much he grows, how much older he is, how much stronger he is, you know, the more trauma he's been through, you know, all those things come together to, you know, accumulate to what what those outcomes are now gonna be, you know, you just don't know, you know, everything's on a much grander scale now that Ewan's a lot older and um yeah, uh what if he wasn't this aggressive, you know, he was never like this before, you know. What if he didn't, you know, what if the hospital never happened and now he wasn't so scared of alarms or you know, you just I mean you could sit and talk about them for days, but um the truth is and what we have to accept is that Ewin is changed for life, you know, being institutionalized has changed him for life. And it will forever.

SPEAKER_03

I'm so sorry that happened to you to you all. Ruby, you're you must be carrying this with you. Like you said, you've always carried this with you, but I also see other parts to your life as well where you're flourishing in so many other ways. Um let's let's talk about that for a little while because I'd love to hear a bit more about some of the work that you do and where your life is heading.

SPEAKER_00

Yes, absolutely. I think when I started sharing you and an ice story, I didn't really know where that was going to take us, but I'd always, you know, followed other accounts online and I was very lucky that people reached out and um I now have a job with SAA Clothing, which is run by James at Stories About Autism and his ex-wife Charlotte. Um she they have literally just welcomed me into their lives, and it's so surreal because we sat in, you know, my parents, I remember during lockdown in 2020, she'd be like, Oh, I really like this guy's post he does about his two autistic sons, and you should follow him, Ruby, and start following him. And and now I'm looking after his two sons, or you know, now I'm yeah, you know, in their house having dinner or watching the football, or uh that's a very surreal thing to wrap your head around, but it's also the best thing that's ever happened to me. And before this I had never really written a life for Ruby. Do you know what I mean? I'd just I was just in you and shadow, and you know, it started from me being his shadow when I was a kid, like I followed him around, but then I I think I got very much trapped in that. Yeah, and I didn't, you know, I went through a huge identity crisis when I became an adult because I just didn't know what my life now looked like. I didn't know who I was, I didn't know what I wanted to do, I didn't know a life beyond Ewing. Uh and I was I was totally lost, and they've picked me up and they found me. You can see that. They uh took me in and put dinner on the table for me and you know made everything possible. And I now have my own flat down south in England, and I am very lucky to go home every about two and a half weeks to see Ewan, and I spend every single day with him when I'm home. And you know, I can advocate for the rest of the community, you know. You know, advocating for Ewan's what I do best, but I have so much experience now that you know being a voice for people that don't have is my you know, that's what makes my heartbeat, and um this job and what I'm doing and being down here and the opportunities that that comes with is yes, like what dreams are made of for me, and it's been very oh it's just been incredible, and I've split my life in two, and um I think that's the best thing I could have ever done for me.

SPEAKER_03

I'm so happy for you that you're going in this direction. Sadly, we've pretty much run out of time. Uh just one last question. I always ask my guests to bring in an object or something sentimental, something that means something to them. Do you want to tell us who you or what you brought in today?

SPEAKER_00

I've brought in baby, and baby is my stuff toy that I've had since I was born. Like the day I was born, I've had baby. And um, she's been on a lot of she's been through a lot, you know. She's gone missing a lot. Yeah, but she has always been the constant. When no one else is there, baby's there, I think. Yeah, yeah you know, when I go to bed and I'd be sobbing about, you know, I because I could hear you and screaming downstairs, and my parents are screaming too or crying too. I had baby, yeah, you know, and that's been the case through my whole life. And you know, a 21-year-old with the stuffed animal, you know, I think I just think, you know, she and in many ways I had to grow up so fast and I missed out on a lot. Yeah. And I think you then grieve a lot of your childhood, and I think baby just she sums up my childhood, and she is she's been my safe space, you know, when my parents couldn't be or when you know friends couldn't be, and yeah, um she'll come along for the ride forever, I think. So a hundred percent she is my object, you know. She keeps me, she keeps me safe and grounded, and yeah, that's my that's my safe space each night, for sure.

SPEAKER_03

I I love this. I absolutely love meeting baby. I feel very privileged doing that. This is her first time outside the house, so very privileged. Ruby, it's just been amazing to talk to you and hear your story. Thank you so much for coming on the podcast.

SPEAKER_00

Thank you so much for having me. It's been amazing to share my story, and thank you for giving me the opportunity to do that.