Lewis 0:00
Hi, everyone. Welcome to this episode of carers voices. My name is Lewis. I'm joined with my co-host Cheryl, and today we're joined by our guest, Leon. Leon, thanks for coming down today. Would you be able to introduce yourself and who it is that you care for, please?
Leon 0:16
Okay, so my name is Leon. I care for my brother, who is called Jordan. He's not here with us today. But he has autistic. And yeah.
Lewis 0:28
How old is your brother?
Leon 0:31
11
Cheryl 0:32
Had to think about that there.
Leon 0:34
Yeah.
Lewis 0:35
So what age would you say you've you've become an unpaid carer for your little brother?
Leon 0:40
Probably seven. Because that's when they dragged me to the carers office and made me sign a bunch of stuff to say I was a carer
Lewis 0:48
Who's they? Is that school or..?
Leon 0:50
I dont know. I was just brought there one day. never regretted it.
Lewis 0:58
So what what sort of things are involved in looking after your little brother?
Leon 1:02
I think it's a lot of stuff you don't realize. But it's just like, you know, you've obviously got your basics like tidying, cooking, you know, getting them dressed. But then there's also a lot of other stuff that's not sort so official like having to deal with the emotional problems not only that they have that you have as a result from things that stem from disabilities like autism. And I don't think people always realize that even the carers themselves they donr always realize that, that's a big part of it.
Cheryl 1:38
And how do you manage your emotions with being a carer? If it's something that you're you're talking about? It's can be hard to manage your own emotions, as well as your brothers emotions. So what do you find helps to, for you to deal with your own emotions?
Leon 1:51
I think, obviously, it's key to talk about it. But I think what's most important is to have a set a healthy self image. Because obviously, so I live with my Nan. And she looks after me and Jordan. But obviously, since Jordan is really autistic, she has to look after him. So I think it's really important to remember that yes, your carers they like, as in your parents or guardians. They love and adore you. But even though they can always show that as much as they'd like to
Cheryl 2:21
So you've got positive outlook on life. From there.
Leon 2:25
Yeah. But it's really important to just remember that like, you are important. And you know, you're loved
Cheryl 2:35
And you'll feel that as well from your family situation. And although your brother autistic, you'll have moments are very precious between the two. Yes, yes. You're sitting smiling. So what kinds of things that your brother does that make you smile.
Leon 2:48
So there's one just the other day, so I'm six years older than him and quite a bit taller than him. And he ran out into the kitchen and stole my jumper off the chair. I know, I followed him because I was curious. I was wondering what he was going to do with it. It was just sitting with it on the couch. And then I went out for a walk and came back. And he was wearing it with the school uniform, because obviously that's part of autism and having that routine in wearing it, even though he's on holiday. So he's got this we call it in my big, massive jumper that goes down at about his knees. And he's just running about causing havoc in this big jumper. And it did make me giggle and then asked why did you steal my jumper and he just started laughing because he knows what he was doing?
Cheryl 3:30
Is he not supposed to steal your jumpers?
Leon 3:32
Not officially, but honestly, like, I think it's so adorable. It's just like, okay,
Cheryl 3:36
You don't mind?
Leon 3:37
No. No, well, he just let me get it.
Cheryl 3:47
So you say your brother He likes a lot of routine.
Leon 3:49
Oh, yeah.
Cheryl 3:50
From there. And what does that routine look like and where do you fit in within his routines?
Leon 3:55
It's quite difficult to say because so it takes it takes. So sometimes as routines change just for various reasons, not all of which we know. So in school we'd all used to get up at 8 and then it was half seven and then it was seven. And then I get I got up at half six because I'd like to get everything done and get dressed and my breakfast and then we could handle Jordan. But then he started waking up at half six with me for some reason. And so I think a big part of the routine is just remembering that it's like, it's to make them comfortable. And when I fit in it and as again, it really depends because for a lot of getting ready for school because I'd have to get ready for school. My Nan would do that, you know, she'd make the breakfast she'd dress him. You know, so while I was at school, I wouldn't say I really fit into his routine apart from just being there. But I think now, I do fit and a lot more. So because obviously I'm not at school. And he's not. I now watch him every day while my nan goes out and handle stuff. You know,
Cheryl 5:08
From there, so you're in the supervisory role as well as supporting role for him.
Leon 5:14
And obviously, there's just a lot of other stuff. So he had like these numbers that are on pages. And they're the bane of my existence because he constantly loses them. So a lot of my job is finding them so that he can continue his routine. So I suppose it's not really a direct role, it's more of a maintenance to make sure his day just goes on as smooth as it can.
Lewis 5:42
What sort of things have you learned about autism? Would you say in this sort of journey of yours?
Leon 5:49
I wouldn't say I've learned much in the sense that I've not really been looking, because you can, I imagine I've learned more than I thought, but only because I'm so used to it by now that, like, I don't really see it as something to learn. In a sense it sounds a bit weird. I know. But like, so when it started, obviously, my nan done a lot of research, and I was quite young. So I didn't know about it. But I still watched YouTube videos and you know, like, oh they start stuff up you know, like routines and all that. But that's only very superficial, I think a lot of the learning to do with autism, and it's quite on the job almost, to put it that way. It's, you know, as reactionary, as it's learning how to handle this situation, if and when it does arise. So it's like, you know, if there's a meltdown, a he wants this how to What does, you know, x how he's doing because he's nonverbal. So it's a lot of kinda learning how to react, but just kind of packing that up.
Lewis 6:57
So what do you do when, when he does have a meltdown, for instance, what sort of techniques or stuff do you do
Leon 7:03
so it depends how bad the meltdown is, so it might just be him having a hissy fit. So that there was this one time he fell off a chair and he didn't have a meltdown. But he did get up. And he just kicked it and walked off. He'd never done that before. So that's hilarious. But when he does have quite a bad meltdown, they can just come out of the blue. So, you know, there was one time where he bit my thumb, and that really hurt. And then, but at that point, if he's violent, we need to put them outside because there's less stuff that can hurt himself with. So you know, in the house was like tables that he throws well not throw it was but like pushes, and just everything is like, you know, he's just a bit of a whirlwind. But when he's outside is in cool air. He's got just, you know, it's sensory deprivation, almost. So I think it's about trying to put them in a place where he can calm down, which again, is outside.
Lewis 8:03
And was there is there certain things that maybe set them off? Or can they kind of just come out of the blue literally just anywhere?
Leon 8:10
So it could? So yeah, there are things that set them off. And we don't entirely know. He, he is obsessed with tipping point. So what used to happen is when we come home from school, when tipping point would come off, despite having like it, he would lose it every night at four o'clock when he got a watch on his iPad or on the TV. You know, but then nowadays he doesn't. So I think meltdowns, sometimes you can see it coming definitely like when they're annoyed or upset. But I think most of times it can be quite out of the blue. Yeah.
Lewis 8:45
And obviously he's still quite young. But have they maybe calmed down a bit as he's got older, or are they getting maybe even worse.
Leon 8:52
I'd say there was a period a few months ago where it was really bad. And we're I don't know why but it was just it was just really upset and really angry. But I think now, he hardly ever has them.
Cheryl 9:04
was maybe that anticipation of summer holidays and things that were coming or does he understand it's like school and things isn't going to be on?
Leon 9:12
I don't think he really knows that the holidays are a thing. Like it has a good sense of time. He knows the days of the week, but then he didn't know holidays were coming.
Cheryl 9:21
Right?
Leon 9:21
So who knows?
Cheryl 9:24
And does he adapt? Well, to change from like the end of the school year changing from being at school to being on holiday?
Leon 9:31
I suppose he does. Like he still wears his uniform when he can't but this morning, he was in his pajamas. So I think he's, I think it takes a few days and then you realize, okay, this is how it's gonna be
Cheryl 9:41
to adapt to the changes.
Leon 9:43
So I think it's more than disruption that makes him upset.
Cheryl 9:47
And how did you find going through school with being a carer?
Leon 9:52
So I'll reiterate that. It didn't really affect me because, you know, I was six years old when he was born. So from a very young age, I've always kind of had him about. So I've not really realized that. But I think it's more emotional than anything.
Cheryl 10:09
And so, so you've just finished school from there. So how did you find studying for your exams? Were you during that more in school time? Rather than coming home to study?
Leon 10:19
I assume every school has this, but we had study leave, which is this period of time where you go home where all the seniors go home, that our school kept to open and just found places for us to study. So I went in every day that I could. So yeah.
Cheryl 10:37
So you were able to do your study in school? Because you wouldn't be able to do it at home?
Leon 10:41
Yeah.
Cheryl 10:45
And how do you feel about going off to university and
Leon 10:48
great,
Cheryl 10:48
great escaping?
Leon 10:51
I know, it'll be like, I'll be fine. For the first week, I'll be bawling my eyes, like i miss my brother, i want him back.
Cheryl 10:58
to go home and as your Gran got a support network around about her for when you're away
Leon 11:02
she does at least she tells me she does. We're still like side-eye. Come on, you need help. She's stubborn, she'll, she'll be fine.
Cheryl 11:14
So when do you leave for university?
Leon 11:16
Well, assuming I do get the grades. Term starts on September 4,
Cheryl 11:22
right?
Leon 11:22
Just like, can't come soon enough. You know, I'm impatient
Cheryl 11:27
from there. so you're Looking forward to getting that time back to yourself as well.
Leon 11:31
Oh, yeah.
Lewis 11:33
It'll be completely different for you. I'd imagine. You know, your brother has been in your life since you were six, then you going off to do your own thing.
Leon 11:41
I'm not gonna have an excuse for who at my homework anymore. He has actually done that before. you think im lying. But no, he's ate my homework.
Lewis 11:49
How old was he when he done that?
Leon 11:51
Well i was in S2 So he'll have been about seven.
Cheryl 11:57
And the teachers understand that.
Leon 11:59
No, they didn't
Cheryl 12:00
No.
Leon 12:01
When I told them by the way, my brother might eat us. I don't think it really clocked with them.
Cheryl 12:08
from there.
Speaker 2 12:10
That was an S two. So it didn't matter. Like, you know, homework doesn't really matter, then. Not that I endorse not doing homework.
Cheryl 12:18
Just to clarify.
Lewis 12:19
What was that journey? Like for you through school? I know, you said that you didn't feel like it made much of an impact to you, but do you ever feel like he missed you missed out on things that your friends are doing, maybe because he had to care for your brother or things that were going on at school that you had to miss out on.
Leon 12:35
So yeah, so I am what the youths call introvert, which means that I don't hang out with people. Because the gross. But em. Yeah, I have missed out on certain things. So recently, I went on a school trip to Amsterdam, to do the Anne Frank exhibition and all that. And we had an information evening, my nan wasn't able to attend. There was a celebration of achievements for my year when I wasn't able to attend that, because you have to look after Jordan. So yeah, I think parents do miss out on things. And I miss out on having, you know, my guardian there. And but, you know, I think it's just, it's just something that happens. In the end, it doesn't really mean much.
Cheryl 13:28
And I forgot what I was going to ask you
Lewis 13:33
So is that when you say it's more like an emotional impact? Rather than a physical impact that has on you. Okay.
Leon 13:40
It's one of those things. It's like, I didn't realize how much this affected me until school was over. And then I was like, Oh, my God, how have I survived all these years? So yeah.
Cheryl 13:51
Did your friends or people within your class know that you were a carer? Then you, do they understand.
Leon 13:59
I don't think you can really understand it unless you do that. Because, yeah, again, it's all very emotional. And it's Yeah, I have simply understood like, the knew some of it. But yeah, it's hard to imagine people understanding the effect on you when you don't understand it yourself.
Cheryl 14:22
And is there anything that you wish anybody knew what about what it's like to be a carer?
Leon 14:28
Probably. Just trying to think I think I wish people understood that just how difficult it can be. Not on me personally, but on the people around me. So, you know, so like, I see. Like, not being able to go out to events or not being able to do this or that like, yeah, we get so much support. But it's, it's more about not being able to fit in as well as one could.
Cheryl 15:07
And so you wish that people understand how difficult it is for you to adapt to different situations. Because you've got your own situation going on at home that you have to take into account,
Leon 15:16
you need to remember that dealing with someone who can brush, anything, tends to make people terribly grumpy, including myself.
Cheryl 15:26
You don't give us that impression Leon
Leon 15:29
Well just wait till I've had my coffee.
Lewis 15:33
So if you could go back to your six year old Leon, what advice would you give him about the journey ahead?
Leon 15:39
It probably be pay more attention to Jordan. And that sounds really bad, negligent. But my point being that because I grew up with him, and it was my norm, I didn't really realize the gravity of the situation and how bad things could be, and how much he would struggle. So I think it would definitely be just persist, and just remember that he's gone a lot worse than you.
Lewis 16:15
I dont know thought because that would be quite hard for a six year old to sort of. Because you were six years old when he was born, you know, and, you know, when you're six years old, you don't have a clue what's going on? I was one of them was running around playing with Legos, you know, just living your best life. But yeah, and I totally get where you're coming from. So what about if somebody else was going to start their journey looking after their younger brother or sister? What kind of advice would you give them?
Leon 16:43
Again, as I said earlier, it'd be to remember that you are an amazing person, and so much better than everyone else. Yeah. But just like, have a good self image. And when you need to focus on your own mental health, because you know, you cannot fully and effectively look after someone if you're not looking after yourself. Like there will be the location, those occasions where you have to forego some of your mental health or, do something that you don't want to, but it is imperative that you look after yourself, as well,
Lewis 17:22
what kind of things did you do to help look after your mental health. Like speaking to friends or family
Leon 17:26
so there's speaking but there's also just remembering to do leasure activities. I'm quite an avid reader. So I think it's remembering to read and remembering just to take that break when you need to. Because, you know, stress builds up and you don't always realize you're stressed because you're so focused on looking out for the other person, but you need to look out for yourself.
Cheryl 17:47
So just taking that time for yourself. Yeah. So any other top tips that you could give anybody
Leon 17:54
Dont get stressed?
Cheryl 17:56
Don't get stressed.
Leon 17:57
Yeah, it's a lot harder than saying obviously. But I do like to think that a lot of the stress that we feel as as being too hard on ourselves, and just putting too much pressure on ourselves, I think, from the day to day life of being a carer. It's It's not difficult, not the day to day activities, like not like yeah, it can be stressful, but I think it's just remembering to keep your cool and seeing the situations for what they are like. So I need to change my brother or sometimes I change my brother when he is relieved himself. And then that means that you know, done the toilet, and that he has just an absolute gremlin and the total worst because he giggles and he like runs about so that can be really stressful. And I do get really stressed because it's like no, don't put that on the wall. Too many times
Cheryl 18:57
it's stressful or frustrating or both
Leon 19:00
both just both.
Cheryl 19:03
From there but you seem to have you've got such a positive outlook on your caring role that you've got a new seem you're you're giggling at the stories that you would youre telling us that would probably horrify. That's a quite a lot of people. So you find a it a privelage. That's lovely. Isn't it.
Leon 19:20
I've met so many interesting people like through caring things.
Cheryl 19:24
So where have you met these people,
Leon 19:26
young carers
Cheryl 19:27
young carers. Jill who's just sitting off to the side from there. So what kind of things did you do at young carers?
Leon 19:36
So it would have just been like leisure activities like baking you know, watching cinema first aid, that's not really a leisure but still
Cheryl 19:46
practical?
Leon 19:46
Yeah.
Cheryl 19:48
And is that with young carers that are the same age as you?
Leon 19:52
So the age is sometimes vary but you've got young and adult carers. So it's like between x age and seventeen latest onward. So yeah, as it's really good to get to know, other carers.
Lewis 20:09
So tell us a little bit more about that is that so you said at the beginning that you dragged along to this was it the carers center where you met these people?
Leon 20:18
I dont know. it was in Dumfries. It was like long that sands.
Cheryl 20:22
Yeah,
Leon 20:23
yeah. So my brother used to go to this mad club thing, which is don't don't know much about it he doesn't go anymore. But and then my nan just took me off. And she's like, there's this lady. And she was like "do you wanna be a young carer". I was like, Yeah, I've done it for the bookmark.
Lewis 20:37
Okay. And so you said that it's good to meet other carers? Did you? Did you ever learn anything from these other carers? Because there was olders ones younger ones? Did you share your stories there?
Leon 20:49
So it's hard to say, because I dont talk to most of them anymore, which really goes against my whole point, but it's fine. No, I do know some of them. So like, you see some of them in school. And I think it's just getting to having a, you know, a glimse at socializing, basically, that's what it is. It's being able to just talk with people and be kids and be teenagers, and getting to meet people and talking about your interests. Like, that's what most of it was. It wasn't these super serious things where it's like, you know, sharing secrets of the trades. And, you know, but it was just, it was being so.
Lewis 21:34
Yeah, that's good.
Cheryl 21:36
Time for you to be you. Rather than you as carer.
Leon 21:41
Yeah, it was nice.
Cheryl 21:43
What kinds of things did you do? Did you was it just activities within the carers centre or was there outside activities?
Leon 21:48
So there was like, we often went to the fire station in Lockerbie, I don't know what it's called is it a fire station?
Lewis 21:59
Well, what did you do there?
Leon 22:00
whole range of things. First aid, watching films. Yeah. Okay. So sometimes we call it the Robert Burns center to watch films. And then other times, we just be baking And I'm repeating myself endlessly. But it was just a wide array of activities. And then sometimes, quite often, in fact, the carers would have these big events where it's like, go to Mabie Farm Park, or, you know, and it's going out on these trips, and I think they were my favorite. Yeah.
Lewis 22:30
What age did you start going to this?
Leon 22:31
So I think seven was when I signed up for
Lewis 22:34
and do you still go? Or when did you stop
Leon 22:36
I wish i still went
Lewis 22:39
So Is there an age on it?
Leon 22:40
So you're a young carer up until you're seventeen and then you go into an adult carer, and that goes from all the fun stuff to just talking over lunch? Not that that's not important. Or not that it's not interesting.
Lewis 22:52
And what's involved in that. And have you met other people?
Leon 22:55
don't know. I've not been like, that's one of the that's one of the things on my to do list.
Lewis 23:01
Maybe if they're going to Mabie Farm Park
Leon 23:04
Yeah. I wish.
Cheryl 23:07
When you go up to university. Are you going to join the carers center up there? Or do you have connections with carers centers up there?
Leon 23:13
I dont know if they have a carers center up there. Is it Fife?
Cheryl 23:17
I'm sure there will be one somewhere? Yeah. From there and just seeing how the different areas support definitely as well.
Leon 23:24
Probably not
Cheryl 23:24
Propobably not?
Leon 23:25
Becasue obviously my brother won't be coming with me. So I feel like like, Yeah, I'll still be a carer but and there's still the emotional burden, so to speak. But apart from that, I feel like that's most of the carers duties, kinda.
Cheryl 23:41
Do you think in your holidays, you'll be back home and still continue being a carer.
Leon 23:46
Yeah.
Lewis 23:48
Do you get outside carers coming in to help with your brother? Or is it just you and your nan?
Leon 23:52
Just me and Nan
Cheryl 23:58
Any other moments or stories you could tell us about? When you've been a carer that's made you smile?
Leon 24:03
1000s go I think one lets see. Most of it's just the whole chaos of it. I love it. So there was one time where my cousin Eve was down and she helps a lot with my brother when she's down. But she like she can't change him. Or that so there was this one time and I think I must have been about 11, 12 13 and Nan was out and Eve and me were watching Jordan. Jordan obviously done the toilet. And I didn't so I didn't change him at this point. I didn't know how to and I thought Eve was going to. Eve didn't change. Yeah, she's way older than me. But em old as a hound. But yeah, so basically, long story short, what ended up happening was Jordan took his trousers or pants off, because no one wants to run around the poo in the pants. And that poo got everywhere on In the coaches on the wall on the floor, everywhere.
Cheryl 25:04
so much chaos to try and get it tidied up.
Leon 25:06
as was mad chaos. It was great fun purely because of how like, panicky Eve was. And I was just like, You know what, I'll just clean it up. But yeah, that was really fun just because of how chaotic it was in Jordan in general. He's running around giggling his wee heart off so am i because it is hilarious to, like, just, I think it's just a comedic it was, it's like you wouldn't expect that I do like to imagine it from my nan's point of view, you know, having gone out for whatever she was doing for like, I don't know, maybe an hour or so coming back in. It's just all gone too. Well, I'm sure you know, the phrase. It's quite apt but Yeah.
Cheryl 25:51
So it's quite interesting. It's something that might horrify Yeah, somebody that isnt within a caring role does not horrify you. And from there, so that's quite interesting to hear about as well.
Leon 26:02
I've seen it all, oh, I've been through. And I'll never recover from it scarred me for life.
Cheryl 26:14
Is there anything else about your caring role or anything that you think might help other people that could be listening to this that you want to share with us?
Leon 26:24
I think it's, well, probably tons, let's be honest, mind's going blank at the minute, but it is just the key points and remember to take care of yourself. See the situations for what they are. So my brothers wriggling around and just causing chaos while I'm trying to change them. And remember that this is just a boy who, like, I'm having to change, you know, it's not, it's not the end of the world. It's gonna be fine. Like, so just don't stress about it. Just don't stress.
Cheryl 26:57
Everything's gonna be okay.
Leon 26:59
Yeah. It will will be fine. I think we do get caught up in the moment when we're carers because of how stressful and how everything can so quickly, just go wrong. But most of the time, if you just keep focused, it won't go wrong.
Cheryl 27:17
That's fab advice that you could give
Leon 27:21
in a terribly long winded way.
Cheryl 27:23
No, not at all. Not at all.
Lewis 27:32
If you think you've covered everything,
Leon 27:35
probably not covered everything, but everything I can think of Yeah, moment. Let's see. I think the only thing that I would say is that you need to be prepared for those emotional moments. So when I would say my brother bit my thumb, like, he bit he bit really deep and he wouldn't let go. And it wasn't so much the pain of a pair of teeth like, biting my thumb, it was more the shock and almost betrayal of it, because it's like you know he's autistic result you know he's related to me, but it's, it's still quite hurtful. And I think you need to remember that there are going to be situations like that. And it's okay to feel upset and betrayed and angry at the person. Because, you know, they don't know, they don't mean to be mean, but it's, they still done it. So I think it's remembering that yes, you care for them. But you do have your limits and you're only human. And it's important to just that is the thing that I think most people should take away from this is that you know, you're a person as well and that you need to take care of yourself and because I imagine with a lot of other carers , podcasts or videos or so, that would focus on how to care for the person that has so I cannot stress enough how imperative it is that you take care of yourself. Yeah,
Cheryl 28:59
definitely. Thank you for sharing your story.
Lewis 29:04
Thank you so much.
Leon 29:05
lovely meeting you
Lewis 29:06
Likewise
Leon 29:09
Oh, yeah. Okay, so I do have a story that really just shows how difficult life can be and how the simplest things can just be turned on their head and that was my brother cut his thumb in school it cut from that that isn't much. it is much when someone doesn't want to wear plaster. So you know small gashes they can be quite bloody and you know, it can be a bit messy but usually just just plaster over and it's been long story cut short me and my nan tried several methods to patch it up, which eventually ended up and I was like, bandages in his hand with bandages then sellotape. And me having to hold his thumb down apply pressure to it. And he's running about and he's covered in his wee droplets of blood. cuz it was bleeding for hours. And the doctors haven't come over and my nan is like, oh my god, what are we doing? You know, he's covered in blood, got blood all over my good jumper. And you know, so there's blood everywhere on floor on us. And I'm having like hold down his thumb. And then eventually, it just like slips it off. And that just makes the problem so much worse. So I think that just shows that in a very long winded way that simple things for us can be really quite catastrophic because you know, autistic people, and this is a bit like, broad of that category, but people who struggle with things like that, and with doing simple things, and it can't just ignore their own discomfort. Of course, they're going to struggle with that, but you know, so it's like, some of the more complicated things that we face like, you know, high school drama, and all that they dont, normally they don't have to deal with that, depending on their disabilities, but the simple things more than make up for it. So I think, you know, in conclusion, caring can be terribly bloody. It's a bloodbath. Literally.
Cheryl 31:22
Just another big question for you. So if you could describe your caring roll in three words, what would it be?
Leon 31:34
Really put the pressure on now. So I think one would definitely have to be chaotic. The other would be privileged, obviously, because as there are so many wonderful things that come out of a caring role that I would not have experienced if I was one of them, normal kids, one of them weirdos that and I think so, you know, you've got chaotic, you've got privileged, but also it's just it's just life, you know? Because, you know, no one goes into life asking to be a carer or certainly be people who go into care homes, maybe they do but anyway. But you know, I think it's just life.
Cheryl 32:25
Thank you. I just thought id chuck that in there and see what your three words would be
Lewis 32:33
So chaotic, privileged and life.
Leon 32:35
Oh, yeah.
Lewis 32:36
They're good three words.
Transcribed by https://otter.ai