A Young Carers Journey: Stephanie's Voice

Join us for this episode of Carers Voices: A Young Carers Journey that delves into the extraordinary life of Steph, a remarkable young carer who selflessly looks after her younger brother, Lewis, who has autism. Join us as Steph shares her unique story, shedding light on the challenges, joys, and remarkable moments she has experienced on this extraordinary journey.

In this episode, Steph takes us through the ups and downs of her role as a young carer, providing listeners with a raw and honest account of her day-to-day life. With genuine warmth and compassion, she paints a vivid picture of the struggles and triumphs she encounters while caring for Lewis.

Listeners will gain a deeper understanding of the complexities of autism and the immense responsibilities that come with being a young carer. Steph’s authentic storytelling allows us to see the world through her eyes, offering a powerful perspective on the importance of empathy, patience, and unconditional love.

Join us on this captivating podcast as Steph's tender storytelling touches your heart and leaves you inspired to make a difference in the lives of others. Whether you're a young carer, a family member, or simply curious about the power of love and resilience, Carers Voices: A Young Carers Journey is a must-listen experience that will deepen your understanding and appreciation for the extraordinary role young carers play in our society.

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Transcript

SPEAKERS

Cheryl, Steph, Lewis

Lewis  00:01

Hi, everyone. Welcome to this episode of Carers Voices today, we're joined with Steph. Steph, thanks so much for coming down and having to chat with us today. We really appreciate that. Also joining my co host, Cheryl Murray here. Steph, would you mind introducing yourself and who it is that you care for?

Steph  00:18

My name is Stephanie. I hear from my little brother who's called Lewis, he's 13 years old.

Lewis  00:25

Good. Thank you. How, how soon did you would you say you started your caring journey for your little brother?

Steph  00:33

He's four years younger than me. So it was just sort of gradually we just grew up with it. It was just I don't know, it's just normal. Yeah. For me, it's always been like that. Second of all, sibling. That. So? Just always been a bit.

Lewis  00:52

Yes. You've always seen as your brother. 

Steph  00:54

Yeah, that's normal. 

Lewis  00:56

Have you got any other siblings? Or is?

Steph  00:58

No, it's just the it's just very normal for me. When other people, like, say stuff, like, that's normal.

Cheryl  01:11

So the big sister, but with extra duties on top. It isn't. So what kinds of things do you have to do to help care for your brother?

Steph  01:19

Well, he's rep he is independent most of the time, and if you tell him otherwise, you will hear about it. But it's just mainly just making sure he's okay. Sort of watching out? Because he

Cheryl  01:34

Does he need prompting

Steph  01:39

Sometimes. Yeah, there's price mainly stuff like food. He'll, like couldn't like send them into a kitchen, like cut up stuff and stuff like that. Yeah.

Cheryl  01:52

So do you provide the supervision?

Steph  01:54

Yeah, so the supervisor help. We were trying to get more independent and be able to do stuff like cutting a role or making a sandwich or something. But he's just supervising him or helping him or something like that, struggling.

Cheryl  02:11

And what is it see attend the same school as you do?

Steph  02:13

He's in S1 and I'm in S6. So we're just crossing over. So yeah, for most of the time, have been in different schools and different

Cheryl  02:24

Schools. And now that isn't in the same school? Does he actively seek you out? Or do you find yourself checking up on him?

Steph  02:30

I definitely found myself checking up on him a lot. Definitely towards the start of the year, because the school didn't know him very well. So it was there were more issues at the start of the year of teachers, because they just didn't know them when they're like, why is this kid acting out? Or like he's not? He's just having a reaction? Because you said this, and this upsets him. So I think I was definitely checking up on him. He was not coming in finding me unless, there was a major issue that she needed to have a little rant about, but it was mainly me

Cheryl  03:07

How did you cope with the change with going through schools quite easily.

Steph  03:10

Yeah, once we got him settled, and then like the teachers all got to know him and everything. He was absolutely fine. And like now because we're coming to the end of S1 now, he's absolutely fine, settled and loves it. But it was just a bit rocky with the changing of from primary to secondary. Yeah.

Cheryl  03:27

And did that reflect back at home? Or was that more?

Steph  03:30

Yes, it did, definitely reflect at home. So like, for example, he really hates French. So we had a lot of discussions about French and how much he hates it, or how he doesn't want to do the class. But eventually, we managed to get him out of the class and he was just doing Spanish and now it's absolutely fine with that. It was just it just needed out with that space. But once we got like little things like that sorted out, it's absolutely fine. He settled in

Cheryl  04:06

and how could you feel or how did you find navigating school well being a carer

Steph  04:13

for most of the time, it was fine because we weren't together. So he was at a different primary school than me and then when I moved to high school, he was still at primary school. So I didn't see him most of the time. I thought it was stuff like homework and stuff like that. That was difficult or like, meeting up with my friends if I wanted to, because I don't live in the town that I go to school into that just added an extra difficulty on top of it. So I need to get transport as well as figuring out who's going to be looking after him. I remembered my mom or dad or someone's going to be home. Because I think most people would be able a 13 year old home everything but it couldn't leave him home alone. So we still have to organize Someone's at home or something like that. So it just adds an extra layer of difficulty to it. 

Cheryl  05:08

and were your friends sympathetic to being a carer or did they know,

Steph  05:12

yeah, I will very open about it. And my friends cuz quite a lot my friends have parents or grandparents that they have to help look after. So most of them understood and were quite exactly anytime they came over to my house and spoke to him, he just blabbered on for ages. And they just sat and listened to him and talked to him and it was great because he didn't get that to school in second primary school. So you've just been nice for my friends who like just sit and talk to him and be friends with him. So yeah, my friends are all really good with it. Good.

Lewis  05:50

Has he got a little group of friends that he hangs around with at school?

Steph  05:54

Yeah, once he's moved up to high school, he sort of found his own group because he went to a really small Primary School. So there wasn't really a sort of grip for him because he's very, into d&d. And I have no clue what else Oh, come on. And that sort of stuff. I have no clue about any of it. So he's founders own wee group. And since that is just settled in really nicely.

Lewis  06:19

That's really good. You mentioned earlier that when he started school, I think you said about people saying stuff. And then he had a certain reaction to what they were saying, what kind of stuff would that be?

Steph  06:31

theres because his middle name is Jensen's. So quite a few people try and call them LJ and he really hates that because he got called that and taunting way at primary school. So when people at high school call him that, and mean it in the nicest way possible, he would just have a reaction to that and be like, but he couldn't explain why he hated it so much, because it just wound him up so much. Stuff like that. And just think he get annoyed if a teacher or learning assistant would sort of underestimate him and feel like he like supervising him with everything. And he's like, I can do this piece of work. I don't need you hanging over my shoulder all the time, please go away, which is like stuff like that little really build off and

Lewis  07:23

so he's very independent.

Steph  07:24

Yeah very determined to be independent and bit more than he actually can be sometimes, but yeah, he's very independent and wants to do stuff for himself.

Lewis  07:37

What sort of stuff does he get up to at home? What sort of stuff is he enjoyed doing?

Steph  07:41

Well, he really loves d&d. What is the dungeon dragons? I think it's like a board game I'm not really sure. So he has a we group at the Oasis center that he goes to for that weekend which he seems he seems to enjoy so it's a bunch of other people from Dumfries which enjoy that which is good. Um, he watches a quite a lot of make YouTube videos and stuff like that about that because there's not no one our family really he's tried to explain it several times. None of us really get it so he he watched a lot of videos about his stuff and he really gets into that that's a really enjoys like reading and drawing and stuff like that. 

Lewis  08:26

What about you two, do to have anything in common that you enjoy doing together or used to enjoy doing together.

Steph  08:32

Not really we quite and will sometimes do like stuff like baking together. Or I don't know if mom because mom and dad, sometimes before Can we go on a Saturday morning mom always works dad sometimes work. So we'll sit and like watch a film together or do something on during that time where they're out trying to talk like time where we're not arguing be not being nice.

Cheryl  09:02

So you do have a normal sibling relationship to has really helped to support and definitely

Steph  09:07

some Yeah, definitely normal sibling relationship 

Lewis  09:14

Love hate.

Steph  09:15

Yes. Absolutely love them. If anyone else said any of the things that I say to him sometimes they would

Cheryl  09:22

obviously be happy. It's a very defensive call. 

Steph  09:25

But it's okay if I say it

Lewis  09:29

so you said earlier about your mom working at the weekends and your dad sometimes work it is that when you'd be like the the main carer for your brother. So that's when you're taking full responsibility after what's and what's, what's that like? Do you find having to do that by yourself?

Steph  09:45

I think as he's grown up, it's got a lot easier because he just sort of goes into his room and does his own frame and just go up and check on him every so often. But when he was a bit younger, like 10 or something? It was a bit is a bit more full on he wasn't really, like often is room doing his own stuff who would be like very in your face telling you every thought that came into his head? Hear all but I don't know. It's just normal for me. Yeah.

Lewis  10:20

And so is that is that the how young he was when you started sort of doing look after him on your own 10 years old? Sorry.

Steph  10:28

14/15 around then. So yeah, it'd be about that. I was like helping out stuff before. Yeah.

Cheryl  10:37

Was that a case of it was autism that your brother's got that he was telling us before we started recording. So as that because she's found coping strategies around about that age, or is that just an age group, he's just starting to be together.

Steph  10:52

Or that stage he's had. He's had a couple issues at school, and he was doing part time at a learning center. And that really helped him settle down. And he really loved that going out of the school environment. So he became a lot more settled at home because he wasn't in his primary school all the time. But at that point, it was in the best for him. But later on, it was like P6 P7 seven. He absolutely loved his primary school. But at that point, it just wasn't going great. But once we got him in a learning center, and it was it just became a lot more settled to use a lot more. Not calm. But just there's just a lot more

Lewis  11:40

Not as for long

Steph  11:41

Yeah.

Cheryl  11:44

And that through your years of being a carer. Have you managed to connect with any other young carers?

Steph  11:49

I did do some stuff with young carers when I was a bit younger. So we go out and we do like, trips, I remember going to stuff. Galloway Activity Center, a group of us and like going and seeing the film and just couple of things I did. So I managed to meet a couple other young carers for that we never spoke about our caring we just spoke about like, ourselves, and we just sort of forgot about that for that time.

Lewis  12:18

And it was that intention of it just to sort of to get yourself out there. 

Steph  12:21

Yeah, because noone mentioned that were just like talking about school or what games we played or something. Yeah, it was never about that was just time for you to break.

Cheryl  12:35

From there. And was that something that have you done that recently? Or was that more when you were younger?

Steph  12:39

It was more when I was younger? Cuz I think we'll still get stuff through in the post for like the Easter activities and stuff. It's a lot more aimed at younger kids for like the actual young carers groups, but I don't know for sure from my own like stuff like my I do sports and stuff like that was sort of my own space away from it.

Lewis  13:09

How did you come about those sort of groups that were you a part of the group or did somebody recommend you

Steph  13:16

I got a referral put into them? When I was in S1, by my pupils sport teacher realized that I might benefit from a bit of extra support or just a bit of away time. And it did it and I made some great friends for as well as

Lewis  13:38

Yeah. What was it a referral for? Was that a referral for this group specifically, or service? Or?

Steph  13:43

it's just the young carers service, okay. And they then run the groups. So roughly, days out and stuff like that.

Cheryl  13:56

So you kept in touch with some of the people Yeah, kept in

Steph  13:59

touch because it was like, girlfriend could could break in one of the groups who was similar age, we sit next to each other on the bus and talk and stuff. So became friends and got our like, social media and stuff. So we've kept in touch for that. And yeah,

Cheryl  14:14

and is that somebody you would go to if you were using a bit of extra support? Or would you like people to mom and dad and

Steph  14:21

I don't know, probably a mix

Cheryl  14:23

a mix depending on the situation

Steph  14:26

Probably go to my mom. She's an additional support needs teacher. So she's experienced with the additional support.

Lewis  14:42

Do you know if your brother's got any plans for after school and about maybe, I don't know was this couple of services in Dumfries that provide further education for people?

Steph  14:59

currently He's not got any plans for anything after school. But I do know a couple people that have done this stuff with some of the Dumfries services, and it's obviously great. But currently we've not got any funds. But we've got we've got a while.

Cheryl  15:20

And you've just finished your exams? Yes. When did you set your last one? Yesterday?

Steph  15:24

yesterday afternoon

Cheryl  15:25

And how did they go? I think they went alright, hopefully Find out in August.

Steph  15:31

Yes. Such a long wait.

Cheryl  15:33

So what's your plans for your next couple of

Steph  15:35

hours, I've got a unconditional to Ayrshire college for HNC. Or I've got a conditional to UWS for performance. So plan is to do a HNC then into uni or just go straight into uni, then do a postgraduate to do teaching, then eventually, support needs teacher. Because I did work experience in a learning center last year and absolutely loved it. And then I did a college course this year and I got to do a placement at a nursery. I found I really enjoyed working with kids with additional support needs more than suppose normal children who didn't have that extra. I just really enjoyed it. So like,

Lewis  16:28

and it'd be kind of natural for you as well, since you've looked after your brothers. Do you have a preferred age group that you'd like to work with once you've

Steph  16:37

sure I think younger kids, but I'm really not sure

Cheryl  16:42

So would that be nursery to primary age children?

Steph  16:46

That's the plan right now. Yeah. But who knows, could change.

Lewis  16:52

And if you if you got into Ayrshire, so that's a little bit further away from home. Would you moving? Or would you stay

16:59

Yeah, I've been fortunate accommodation. So I'm planning on moving up there. So we'll also have to think about my brother in that. So my mom was currently doing a job where she can work from home from law and it's a lot more flexible than her previous job. So we think it should be fine with that. And if not, my grandmother lives in the area as well. She lives in Dalbeattie and she's always more than willing to have my little brother over. She they got along really well. So I think it'd be fine

Cheryl  17:34

for you so that you can go and attend do college, is it just a year course?

Steph  17:38

the HNC is just a year course. And then it's equivalent to the first year at uni. So you could then do that and then go into second year at university. Or you could do the H N D which is equivelant to second year and then go into third year. So yeah. 

Cheryl  17:54

See where life take you So have you got any stories or anything you can share about a time that's made you laugh or smile while carrying our your caring role.

Steph  18:08

My brother wasn't that long ago actually he got a letter inviting him to go to a disability sports activity. It was at the college actually. And me and my mom were talking to her about it and asking like, are you excited to go? Yes, it'll be very nice to go and support the disabled people. He is 13 at this point. He hadn't clicked that because he's autistic. He's classed as disabled. He just like, I'm Lewis, I'm normal. So we sent you I was like, You're not going to support other disabled people. You're being classed as that. He was very shocked. Very dramatic reaction was the arms were flailing. It's quite funny.

Cheryl  18:59

It's funny that you didn't recognize yourself as a carer and a lot of carers dont that you didn't recognize yourself as a carer and you recognize yourself as being a sister. Now. Where as your brother he does have a learning disability and didn't actually realize or identify himself as being disabled.

Steph  19:15

He'll see other people at school, there's a boy at school in a wheelchair, he'll look at him and go, yeah, he's got a disability, but that doesn't really matter. He's like, I'm just, I'm just me. My brain just works a little differently because he knows he's autistic. And he's very open about that. He's very he's very knowledgeable about it. He knows so much about autism.

Cheryl  19:40

What's his specialist subject is Dungeons and Dragons

Steph  19:44

Dungeons and Dragons Pokemon. It's just sort of that I don't really know anything about I should know I've heard so much. Go Yeah.

Cheryl  19:57

Know when to nod

Steph  19:59

Yeah. All sounds interesting. Yeah. But he never thought of autism as a disability, because he just like, it's just me. It's just how I am. So that was quite entertaining.

Lewis  20:14

What was the what was the outcome of that? And is he still going? Or is this?

Steph  20:17

It's sort of okay with it now and he's just like, I'm me. I don't get why I'm disabled. That's not, I'm not. But he's like, he's very accepting of everyone anyway, so he doesn't really mind but believe. Well, I think he just found it a bit shocking. Yeah.

Cheryl  20:37

Is he a sporty person?

Steph  20:38

No, no, he enjoys the sport stuff, because they were doing what they were doing, but they're doing like lots of different activities. And there was people from lots of different schools. So he quite enjoyed that. But he's definitely, definitely not a sporty person. No.

Lewis  20:54

So do you think it's been beneficial for your brother to get involved with different groups and doing different things.

Steph  21:00

Definitely. when he was a bit younger, he didn't really do anything. He did do stuff. But he didn't have like, a group or anything. But now he's got like, Dungeons and Dragons group. He's been to the disability support stuff. And he goes to a group on Wednesday night in dalbeattie, which is for young people with additional support needs. And it just, it just made everything a lot better, no better, he's found people similar to him. And he's found

Cheryl  21:40

he can make his own friendships as well.

Steph  21:43

Because I was always like, going out to like dance classes and stuff like that. And he was just stay no staying at home. So it's like, it's nice to see him out and doing stuff like that. So yeah.

Lewis  21:56

And how did he find these groups? was they were they just, they naturally came across? Or did you help encourage it

Steph  22:01

my mum found most of found both of the groups that he attends regularly on online, she found information about them on Facebook, I think, and she was like, it won't hurt to give it a try. You can go for a week and see if he likes it. And he's gone to both of them and he's absolutely loved them and it's just clicked with people. I think the group that he goes to in Dalbeattie there is another girl who's in his year school who goes there. So I think that made it a bit better as well because Oh, I know her. But I think that's groups got quite a big age range. I think it's 13+ up to like 20s So it's a nice mix for him of lots of different people. So because he's he is quite mature he's very grown up. So it was quite nice for him to get to meet people

Cheryl  22:59

and support network for your mom as well being able to speak at different parents.

23:02

Yeah my mom's because obviously she's works in additional support needs. She is already quite knowledgeable and stuff. But I think it's helped my dad a lot because he's he's ex Navy didn't really know much about additional support needs until he had Lewis and he's getting there. Quite good. From now still have moments but I feel like that's quite normal for . Parents and 13 year old boys to argue. So yeah, but

Lewis  23:49

So Steph, was there ever any moments when your brother was younger, or maybe even now at his current age where he would have maybe like episodes or tantrums or is maybe like really worked up about something?

Steph  24:03

Definitely if he feels like you're not listening to him and not like respecting his opinions or something, then you will hear about it. It's just very because we had some issues at the start of the year when if there was like an issue in class or something and he was then trying to talk to a teacher about it and explain to them like what happened and how like, why it upset him or something if he felt like they weren't, like really listening. They were just like, sort of like, yeah, okay, Lewis, sure. Whatever. Then he wouldn't be very happy with that. You'd be very emotional and it would normally end did a little rant or something or is sometimes like bottle it up and leave it till he got home. So we got to hear all about it when he got home. But did sometimes like have moments when he was at school.

Lewis  25:03

And if these ever happened to him, would you? Did you ever have methods of maybe calming him down or there was things that you could do to help him chill out?

Steph  25:12

It's just sort of letting him talk it out. And just saying like, all right, I'm listening. What happened? Like, just let him say what he needed to say. Because that was always problem was most of the time as they weren't listening to me. I didn't get to tell them what I needed to say. Throughout, right, sit down. Tell me what happened. Right? Okay, that's fine. We can deal with that. That's okay. Just sort of letting him talk it out. And then just get out of him.

Lewis  25:48

And it was through talk, talking to him, that you can cross these issues happening at the start of school or when they come home from school itself or mix of both?

25:56

Mix of both because he would if there was anything. If anything ever happened at school, he would come over and tell us but I would normally notice if anything was happening in school. If he didn't look happy or anything like that, I'd go and pull like, are you okay? Get told all about it. The rest of my break for lunch. So we'll find out whether it was him at school or a teacher contact now saying something happened in class today. Just wanted to let you know, Lewis and someone weren't getting along or something like that.

Cheryl  26:40

And were the teachers quite receptive of any guidance that you could give them on how to deal with situations?

Steph  26:46

Yeah, because there's a couple times where Lewis would have issues while I was in a study period, so I could hear him going off and like the hall or something, so I would go down and talk to him. I was like, right, calm down  right this teacher isn't the problem you're not actually mad at this teacher stop yelling at this teacher. Calm down. Just talk just talk it out. There's just so I think we've got there the teachers know is just needs to calm down, let's find the quiet space. And just have time to like calm and then talk it out. Because sometimes you just need space to like, be angry and be annoyed. Where other people aren't like bugging him so just needs to be he just needs to be out of space and it's only space and then just once he's done that he's like right I will now tell you why I was annoyed and angry and and I will now explain it to you.

Cheryl  27:56

Does your brother have any routines that he likes to follow?

Steph  27:58

And there's nothing that I've particularly noticed he's not he doesn't seem to be very like routine focused, but I'm sure he probably does have like little routines that he does himself that I've not picked up on like he does. Like I have not noticed anything but he might have wee routines i've not picked up on you.

Cheryl  28:24

So do you have any tips that you could give to any other young carers who are coming up through family becoming a young carer or have just had to step into the role of being a young carer

Steph  29:04

You need something to be able to separate yourself so you can have your time with your brother or your mom or whoever is that you're caring for, but you need to have something that separate from that and I and that's how I did anyway, it's how I do cheerleading so that separate from my brother and says something me and my mom will do will travel to competitions and stuff like that. And it separates which takes me away from that responsibilitiy for even like couple hours a week to be an anything like sports team, computer games, drawing, coloring, just something something for you. That's yours it is not theirs as well. 

Cheryl  29:54

Any other tips about how to navigate school or anything like that?

Steph  29:58

That's it you'll definitely find Have the teachers that are going to give you leniency, and you'll find the ones that aren't, some of them will give you leniency and some will be absolutely great with it. And some, I've found particularly slightly older teachers don't really get it as much. Some older teachers actually great, but from my experience, it seems to be slightly older teachers, they just don't get it. So some teachers will give you leniency and stuff like homework and stuff like that. And eventually,

Cheryl  30:34

extra time to do work

Steph  30:37

extra time to do it extra help with it if you're struggling, let you like come and sit in the room at break for lunch and just have like a quiet space to do it. Because depending on your home life, not all kids do have a quiet space to sit and do homework. And then caring responsibilities on top of it just get even more

Cheryl  31:02

were they understanding with if you counldn't get your homework done on time.

Steph  31:08

Most teachers were understanding with me if I couldn't do anything if I was, if I just told them why some people won't want to tell their teachers why. So I think they are for the teachers that I went and said to like, Hey, I couldn't do this, because I was helping to do X, Y and Z. They were like, okay, that's fine. Get it in for like the next time you have class or something like that. So some teachers were very understanding of that sort of stuff.

Cheryl  31:44

And was that something that you told your? What did you call it as a pupil support teachers for teacher? Yeah. Was that something you told them when you moving up to high school? So they were actually aware that you were a carer? Or was that something that you have to tell them?

Steph  31:57

I didn't. When I was moving up to high school, I didn't really think of myself as young carer, because I'd seen stuff. It was on CBBC or something I was about young carers, and it was all children taking care of parents. So I was like, that's not me. I just have a little brother. That's fine. It took a bit into S1 and someone. It was my pupil sport teacher, I mentioned to them about how my little brother was autistic and like, Oh, would you be interested in referral to young carers? And I was like, No, why would I be? I'm not a young carer that's it's just my little brother. I think after that, and after I sort of realized I was like, Oh, this isn't normal for everyone. It's not like the same as all my classmates. After that, I was quite open about it and would tell my teachers and stuff like that, but it was my pupil sport teacher that actually realized that I was a young carer because I never thought of myself as that before. Yeah.

Lewis  33:10

Must be quite because I can imagine it being a young carer, if i was caring for my little brother, as if I was in that situation, I think that my parents are the carers in that case, you wouldn't think of yourself as a carer but in reality, you're even if you're just looking after your brother for a couple of hours or watching them whilst your parents in the kitchen, cooking something, you know, you're a carer and people people just don't even realize that

Steph  33:33

it's just like my mom and my dad and my ground look after Lewis I'm just I'm just a big sister. I just help out when they are busy or something like that. It just never clicked for me until I was 11 or 12. Just as normal for me, it's my life. So yeah.

Lewis  33:59

No, thank you so much for coming by and stuff. It's been great chatting with you and it's been it's been really good. 

Cheryl  34:04

Was it as bad as you thought it was going to be?

Steph  34:06

No.

Lewis  34:09

AWESOME.