A Mother's Journey: Navigating Autism with Siobhan Evans

In this episode I sit down with Siobhan for a deeply honest and heartfelt conversation about her journey as a Mum to her son with Autism.

We talk about the realities behind the diagnosis, the emotions, the challenges and the strength it takes to navigate a path that can often feel uncertain and overwhelming.

Siobhan shares her personal experiences, the lessons she's learned and how her perspective on life, parenting and resilience has evolved on the way.

This episode is about raising awareness, breaking down misconceptions and reminding anyone on a similar journey that they are not alone. 

I am so grateful to Siobhan for opening up and sharing her story. It is one that deserves to be heard.

Hope you all enjoy listening as much as I loved recording it!

Lots of love

Ursula xoxo

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www.instagram.com/vibes_ursula

Transcript

SPEAKER_01 0:00

Hello, and welcome back to the Everyday Mindset podcast. I hope you all enjoyed the last podcast with Shaky Mains. And if you haven't listened to that yet, then you should definitely catch up on that. But today I have a very special guest. I have Siobhan Evans, and she is here to discuss life with autism, and we'll be discussing a very important person in her life. And I think this is going to be such an inspiring, probably emotional conversation. But I'm really excited to have this chat with her and for you all to listen and hear Siobhan's story. So welcome, Siobhan. Hey babes. You okay? Yeah, I'm a bit nervous. No, you'll be good. Everybody that knows Siobhan will there's literally everyone's like, I can't wait to hear this.

SPEAKER_00 0:55

Yep.

SPEAKER_01 0:56

That you'll be great. So, first of all, how are you feeling coming in today's conversation?

SPEAKER_00 1:02

I'm good. I'm good. I'm quite like peaceful, even though I'm chaos, but yeah, no, cool.

SPEAKER_01 1:09

Good. So for anybody listening who doesn't know you, how would you describe yourself in your own words?

SPEAKER_00 1:16

So I'm a mother of two, I'm a carer, I'm a wifey, and yeah, self-employed, just a bit of a loud mouth, really. Love it. If you know, you know, girl. But yeah, yeah, I love it.

SPEAKER_01 1:30

So as you said, you're a mum of two and you're also self-employed. So what does a typical day look like for you?

SPEAKER_00 1:38

If I do a day where Dewey has decided to start at 2am, so some days he just wakes and he's not going back to sleep. Okay. So if it's a Monday, then about 5:35, I usually go down Clakey's, come home, do everyone's pack lunches, and then Dowie's taxi comes to pick him up, and then we go to work. Mallie usually comes with me, bless her. So does she come with you like on when you're doing most of the time she's with me doing hair, yeah.

SPEAKER_01 2:12

So you go around people's houses, yeah, yeah.

SPEAKER_00 2:15

Yeah. Definitely. Because it's more kind of I can get home in a good time for the taxi and stuff. So yeah, it works out really well when they're when especially when they're this small as well. So yeah.

SPEAKER_01 2:28

Yeah. So you know you said he liked everyone wake up at two. So do you literally just keep going then all day until bedtime? Yeah.

SPEAKER_00 2:35

Wow. Yeah. And he won't sleep or any he's tired, but it's like his body like his brain is doesn't need sleep.

SPEAKER_01 2:45

Yeah. So Okay, so we'll like talk about motherhood. So can you take us back to when you first became a mum? Like what was that time like for you?

SPEAKER_00 2:57

It was quite overwhelming if I'm honest. I had Dewey five weeks early in COVID at home. So yeah, I was really kind of it it kind of messed with me a little bit, if that makes sense. I was going through a tough time through pregnancy as well. So I just yeah, it was overwhelming, I think. Yeah.

SPEAKER_01 3:18

Gosh. So gosh, even COVID alone, and then was it I'm assuming it wasn't planned to have no, gosh, no, no.

SPEAKER_00 3:26

So yeah, it was I think it was just kind of like chucked in the deep end, if that makes sense. Yeah. So yeah. I had no hospital bag packed or anything. Oh bless you.

SPEAKER_01 3:36

So okay, we'll talk about Dowie. So when did you first maybe start to notice that Doey might be experiencing the world a bit differently?

SPEAKER_00 3:46

I would say probably more so between the age of between nine to twelve months. Oh gosh, that is. Yeah. Wow. But definitely, like as he got older, it was m more noticeable, if that makes sense.

SPEAKER_01 3:59

So what made you like because nine months is early and it's good that you spotted it.

SPEAKER_00 4:04

I think I was quite lucky because our nephew were he's three weeks, they're three weeks apart. Okay. So obviously, when Dewey wasn't hitting those milestones, he was. It was kind of like when I was bringing it up, it was like, Oh, he's Prem, he'll you know, boys are slower. But then it came to a point where it's like nine to twelve months. I was a bit like, oh gosh, he should be doing like X, Y, and Z, if that makes sense. Yeah. So yeah, yeah. But lots of the time I got pushed back saying he's Prem. It's COVID, COVID baby was the biggest excuse, really.

SPEAKER_01 4:37

Yeah, and you hear about that a lot, isn't it? Yeah, yeah. Um so how like how did that make you feel like in those early stages when you were starting to think, oh, something's not right?

SPEAKER_00 4:47

If I'm really honest, and I probably never said this, I thought it was my fault. Yeah, I thought that yeah, I'd done a shit job. Because like he was oh, don't want to get upset already. He was only comfortable like watching hey Dougie. So that's what he did the majority of the time. So I think when he got to nursery and they were like, Oh, maybe he's had too much hey Dougie. I felt like oh and they weren't saying it from a bad place, it was probably more of like a hopeful that you know he'll catch up. It's just but yeah, I felt like it was my fault. I felt like I'd done a bit of a shit job, if I'm honest.

SPEAKER_01 5:23

Yeah, it's sad that you felt like that. But I suppose it's hard because you're a first-time mum, you don't really know what to expect or experience, and like you say, you found early that he was comfortable watching heyduggie and things, which is what you want, like you want your child to be comfortable at the end. But I feel such a shame that you felt like that. But like, did you feel supported through that stage?

SPEAKER_00 5:50

Yes, I know, with family and friends, like amazing. I couldn't follow anyone friends and family, professionals-wise, questionable, you know, uh it was a lot of like your first time, this is your first time. And I was a bit like, well, I'm not saying it for the sake of saying, you know, I remember one health visitor like appointment, and we were in the room and he was like kicking off a little bit, and I had to give the phone, and but he was not acknowledging anyone in that room, and they were like, Oh, okay. And I was like, I've been telling you this since nine months, and I think at that point he was like one and a half, maybe. But yeah, he just was happy, you know.

SPEAKER_01 6:30

That must have been so even though you had lots of support with friends of family, but to not feel recognised or listened to like from professionals was you need support, and you probably needed it that early on. Yeah. So yeah, that's really sad. So did you feel that you knew much? So obviously he he was diagnosed with autism. So do you feel that you knew much about autism prior? No, no.

SPEAKER_00 6:54

I think obviously I worked in a salon before having children, and I think I did two kids that were autistic, but they were different today, so they were verbal, but you know, they had their own like traits and stuff, but I never yeah, on the whole, I wouldn't have been able to tell you what autism was or you know, any of it really.

SPEAKER_01 7:16

So I suppose when you were starting to notice things were a bit different, you just thought, oh, there's something not right here, but you weren't really sure what you were. Yeah. So can you talk us through the journey of getting a diagnosis?

SPEAKER_00 7:30

So I think the first thing they did was speech and language, so they refer you to speech and lang. So was that the visitor? It was it was supposed to be, but yeah, we were told she'd done it. He went to nursery, and that week he started. She was like, I'm gonna, you know, contact that so Kilch were amazing. And then I did ask the speech and lang lady, like, well, who did the referral? And she said Kilkh. So he was two, so it was still early, but it could have been earlier. And then from that point on, then we were under PEDS. So we had a what's it called? Pediatrician consultant, wherever. Uh he was amazing. And then I think they saw us a couple of times. Obviously, we're just watching Derwi. And yeah, he was. I got I think it was a phone call when Mali, I was two weeks postpartum with my second. We were quite lucky, really, in one sense, because the speech and language lady rang me before Christmas, so this was ages before this, and she said, Look, there's like it wasn't a jump the cue, but it was like he's got all these files. Do you want to go down the route of this initial assessment and stuff? And I was like, No, it's fine. And then I went home and I was like, No, you know, if there's something, if we can get him more support, then let's do it. So, yeah, so then obviously Dr. Williams at the time went through all of the reviews that he'd done with us, and he he rang me and he said, Yeah, he's I'm gonna diagnose him if you're happy with classic autism, which is I personally I take it as like profound autism, really. Yeah.

SPEAKER_01 9:07

So how old was he when he was three. Yeah. And I like I think we should acknowledge as well. So you were obviously pregnant with Mallie and had her before all of this? Yeah, so yeah, she was two weeks old when I had that phone call. Yeah. So you've been through all like going through all that and raising another child, like wow. Yeah, does having one child like is hard enough? And like you say, and you had extra challenges with that as well. So gosh, fair play. Do you ever think of like how did I do that?

SPEAKER_00 9:37

Um, sometimes I think, oh my gosh. But I think I'm quite chaotic. Like, if life isn't chaos, I'm a bit like, oh my gosh.

SPEAKER_01 9:45

I feel like you're not.

SPEAKER_00 9:46

So I'm like 100 miles an hour, I'm like, yeah.

SPEAKER_01 9:49

Oh my gosh, like that's like Superman already. So education-wise then, what were your thoughts? Because obviously he was diagnosed still in Kilch, I'm assuming, obviously, yeah, before he went to school.

SPEAKER_00 10:04

So what were your thoughts then thinking, oh my gosh, going into school was really hard, if I'm honest, because I think it was more of a personal thing of like, you know, in your head when you set out your you know, you have a baby, you have all of these visions of like, oh he's going to primary school with every you know, obviously my friends' children were in school, so I really wanted to try it, if I'm honest, and we did, but yeah, it just wasn't he was fine, he Dowie's chill, but it would have come to a point where he was older, where the gap would have just gone bigger, and yeah, it wouldn't have it wouldn't have worked in the end.

SPEAKER_01 10:42

So did so he didn't file primary school. He did, he went to mainstream.

SPEAKER_00 10:49

It was it was good, they were amazing with the resources that they had, they did their best, but it just didn't, you know, he was school run, he'd come home, he'd have a meltdown for about an hour afterwards, just completely dysregulated. But I think he even though he is kind of classed as limited understanding, I think he understands a lot more. So I think that he's aware that he's different to people, so that must be quite exhausting to be kind of you know watching others be able to do things that we take for granted that he can't how he can't do.

SPEAKER_01 11:26

So and school is a massive thing for any child, and especially if a child has got difficulties, and like you say, if Dowie is aware of like wanting to do certain things and whatever, like gosh, that's tough for him, and like you say, and he was coming home then, and obviously he or his safe place, isn't it? And that's when he was able to like display those emotions. Gosh, like so how did that impact you emotionally, like the whole school thing?

SPEAKER_00 11:58

Oh my gosh, it it this sounds probably really dramatic, but I think it did break me. I can be I think it was about yeah, about November 24 to kind of like April 25. I was yeah, really low because it was just kind of like you were seeing well the gap was already happening, you know, they're all doing neurotypical what they should be, but obviously Dewey wasn't isn't there yet. So yeah, it was really tough. A lot of phone calls, like when he was obviously having meltdowns, he grabs his ears a lot. So to them they were like, Oh, maybe he's got ear infection. And I was like, Oh no, he's you know, but they again I think they were coming from a good place. It was just I suppose it wasn't helpful for you. It was just tough, you know, like yeah, a lot of phone calls. And I remember being like, I used to go to mums and prams at that point when Mally was small, and it would be every time I was there, so I'd be in the end, I'd be like, Why am I bothering? Because I'm gonna have to chase all the way back now to go and get him, which you know is fine. I don't always do that, but I was like, Oh, I'm gonna give that up for now. But yeah, so I had to really kind of strip back because it was it was drained in me.

SPEAKER_01 13:14

And again, I just to go through all of that again and because how old was was Mali at the time?

SPEAKER_00 13:20

Marley would have been Yeah, I think she was 24. So she'd been over a year old. Yeah, yeah.

SPEAKER_01 13:29

I just I can't believe like yeah. I just think you're amazing. Oh, I don't know. I don't know. So do you did you ever feel like the system wasn't built to like support you with the whole school situation?

SPEAKER_00 13:46

Did you find it quite I found I had amazing support from the teachers and the teaching assistants. I didn't, if I'm honest, I didn't really have much to do with the teachers, if that makes sense. Teaching assistants, they were incredible, and I think that's what I found hard too when we were deciding on whether or not CEN school was for him, was because I felt like I was losing that support. Yeah, that's it. They were amazing, yeah. But the in regards to when you go higher up, if that makes sense, yeah, I struggled with that.

SPEAKER_01 14:18

So on a positive note, we'll talk about so obviously you did make the decision for me to go to a CEN school, and how has that been for him and for you as a family? Amazing.

SPEAKER_00 14:30

Oh, that's it's just more kind of at his pace. It it's a specialist thing, I think. Like it's like I know this is a bit off thing, but it's like if someone came to me and had an afro wanted me to cut it. To me, that's a specialist thing. I've had like probably a textbook to say how to do it, I wouldn't be able to. So I kind of feel like that's the same with education as well. But yeah, he's just flourishing, bless him.

SPEAKER_01 14:56

Yeah, you mentioned he goes in a taxi, like that's a massive thing, isn't it? Like I don't even think I'd get Isla in the into a taxi on a room. So like that's a massive milestone and achievement for him. And like obviously he's going to a like a h a safe place that he gets a safe place as well. So do you find there's no less meltdowns when he comes home?

SPEAKER_00 15:18

Yeah, yeah, it's just peaceful. I think he's got quite a trek to come back in the taxi as well. So maybe that that journey home is kind of like just time for him to chill and stuff. So yeah.

SPEAKER_01 15:29

Oh, that's really like that's a positive, isn't it? Definite. So, like obviously we just spoke briefly. So, what does everyday life look like for you and your family now? Obviously, that's a positive change. So, has that helped dramatically your family life?

SPEAKER_00 15:45

Yeah, I would say so.

SPEAKER_01 15:46

School's a big part of a child's life, isn't it? So, do you think that's helped your home life as well?

SPEAKER_00 15:52

Yeah, I think on the whole it's a lot calmer. Don't get me wrong, he has he's still we have meltdowns and stuff, but yeah, he seems happier if that makes sense.

SPEAKER_01 16:03

That's good, and that that's what we all want for our children, isn't it? Definite. We want them to be happy. Definite. So prior to this, obviously we had like a questionnaire thing, you said that the world isn't always built for him. So can you explain what that means in real terms?

SPEAKER_00 16:19

The only way I can describe this is it's like we're we're obsessed with like com comparison, I think. Yeah. And I think the way that I feel about is is like if we were to put goldfish in a show jumping ring and asking it to jump like a show jumping horse, we wouldn't do it. So that's how I feel.

SPEAKER_01 16:42

Obviously, everyone's got individual feelings, but yeah, that's how I think that's a good example because it's like you say it's true for you, isn't it? And you can see that clearly because we've experienced it with Derby. So, what are some things that people might not see or understand about raising a child with autism? Because obviously, like you say, uh autist every autistic child is different, isn't it? They've all got their different traits and things. So obviously there's different generations of people. Do you find that an issue? Do you find that people struggle to understand?

SPEAKER_00 17:16

On the whole, uh, we've had quite like positive interactions, shall we say? That's really good. But yeah, sometimes there are moments where people say things, but I think again, they come from a good it's like when they say, like, oh, have you tried him with like food, for example? He eats like five things. Have you tried him with this? And I'm like, Yeah, I have. But again, they're coming from a good place. Yeah, it's just you know, before I had Dewey, I didn't know anything about autism, so they're not going to either, so I kind of have to keep that in mind.

SPEAKER_01 17:52

Yeah.

SPEAKER_00 17:53

And I think probably the biggest thing is when he's kicking off, it's not a temper tantrum, it's because he's melt he's dysregulated and he can't tell me what's bothering him, so it's just it's a volcano.

SPEAKER_01 18:06

And I think, like you say, because people who don't know will look at that and have Just think oh, yeah, but again, they don't actually know the situation, is it? And like you say, that's like a lot of strength for you to ha obviously you're dealing with a situation, but you probably think do you ever think of like, oh, what other people are thinking around you?

SPEAKER_00 18:24

Or I don't think I think I'm probably gonna sound a bit Delulu, and I think I am Delulu anyway, but I've got terminal vision when I'm with him. So, like outside noise, I can't I don't really like I think he's taught me I don't give a shit. Yeah, as long as he's cool.

SPEAKER_01 18:43

Yeah, and I think that's great, and that just shows how much of an amazing mum you are because you're focused on Dowie basically and his needs and what you're gonna do to meet his needs and fuck everybody else. Yeah, which is like amazing. Yeah, thank you. Honestly, I literally I love this. So obviously, again, we spoke before, so you're really passionate about teaching people not to judge situations that they've never been through. I did was gonna say, where has this come from? Has this come from mainly since having children?

SPEAKER_00 19:16

Or is there a bit before or I would say yeah, children and probably experiences like stuff that we've been through when we were kids, just you just don't know what people are going through. So just chill and be kind because you don't know if that's what you're saying has an impact.

SPEAKER_01 19:37

And like you say, people are quick to assume and they actually don't know the full story, isn't it? And that's yeah, common unfortunately. So is there anything that you wish more people understood about autism?

SPEAKER_00 19:52

I would say my top thing was again the the temper tantrum thing, it's a meltdown. I probably maybe like stimming, so Derry like flaps his hands or he jumps, or what else does he do? He shouts a lot, and it's not he's not shouting at you, it's just his brain is either like loving whatever he's doing and it just like just shouts. So for the outside world, that's probably quite confusing.

SPEAKER_01 20:20

Because I have to say, like, it is talked about a lot more now, and I have noticed, you know, when I'm on TikTok, I do actually come across a lot of videos of young children, children with autism, like a lot of it actually. And I've learned a lot about stimming because I never knew what that was before, but also it does happen in like most children as well, because like I've noticed eyelid as some of like what they call stimming, yeah. And it's quite interesting to like realise it's their way of coping in that situation or regulating themselves, isn't it?

SPEAKER_00 20:54

Yeah.

SPEAKER_01 20:55

I've been like this has been on my mind the whole time. I just want to say, so you know, is the stigma of children only being diagnosed at seven still a thing? Because I feel that's what I've always been led to believe. Yeah, they don't diagnose children until they're seven.

SPEAKER_00 21:12

So did you find I would I would say no, but then I think maybe when they're lower care needs, perhaps maybe when they're verbal and you know they can kind of express themselves to somewhat of a degree, maybe they they hold off diagnosing them to see if it's just delays in some things. On the whole, for me personally and everyone I've met, they've all been diagnosed quite young, but then I haven't been on the other side.

SPEAKER_01 21:43

So yeah. I think it's good, and like I say, I think it is a good thing if they are diagnosing earlier, because like you say, you can get the support you need earlier earlier. So obviously, are there any strengths and positives out of this situation? I'm with Dowie and his autism. That you think people often overlook?

SPEAKER_00 22:02

Yeah, possibly. I think it just changes your mindset as a person, so it probably makes me a much nicer person and less judgy. I'm trying to think now, what else?

SPEAKER_01 22:15

Because like obviously, you know, dare we have an autism isn't, you know, there's negative elements and there's positive elements. But like there probably is a lot of positive.

SPEAKER_00 22:25

Oh my gosh, yeah. He's an apologetically himself. Yeah. And I think that's class. So that's made me either you know, before you you know when you go like, oh I don't give a shit what people think? I used to. Yeah. But I used to brush it off like I don't care. Now I generally do not care. You can probably insult me as because he's an unapologetically himself, so I'm like, look at it, life's too short.

SPEAKER_01 22:48

And as in that, like that's one thing I want for my daughter is to just be unapologetically herself, because in this world, as we know, and I've I'm a victim of it myself, you do go through a period where you think about what other people think and you worry what to do and things, and like you say, you're looking at like someone like Dewey, who's just unapologetically himself, and that's all you want, isn't it? Yeah. And he obviously is teaching that for you as well, which is something like really lovely.

SPEAKER_00 23:16

Because I always think with Mali, I'm always worried, you know what how like you go through school and stuff and you kind of I hope like because she's such a diva, I don't want her to lose that. So I'm hoping that Dawey, like she sees Dewey and she's gonna be like, Yeah, and that's go fuck it.

SPEAKER_01 23:31

I feel exactly the same. Like I'm dreading Eyelist that in school because I don't want her to lose that like that shine, like she doesn't care what she says, how she dresses, how she looks, like she's just herself. So I can totally understand that. And like I say, Dewey's gonna be a good role model for she's lovely. So obviously we've spoken prior, and you say watching him try his best every day makes you want to try your best too. So can you talk a bit more about that?

SPEAKER_00 24:02

So I just I feel like you know, he's up at like say 2am and he doesn't really grumble about being tired or anything like that. So I'm like, I can I can get out the door at half past five and go to the gym for an hour. And do you know what I mean? And like I'm this year I've been more conscious about like making better choices with food and stuff and like making sure I'm working out because unfortunately, my forever isn't you know, his forever isn't mine, so I need to be as healthy as I can for him. But yeah, he just inspires me to just be better at everything.

SPEAKER_01 24:42

So I was just literally my next question is gonna be so like what has Derwe taught you about life?

SPEAKER_00 24:47

I don't everything, just being a kind of human, even though sometimes I can be a turd, and I but I'll openly admit that I will be.

SPEAKER_01 24:57

But on the whole, you know, just again unapologetically himself, he's so kind, so and loving, and yeah, your actions speak louder than words, and he's taught me that 100% because obviously you say he's and he's non-verbal, and I just want to touch on that a little bit because like how does that feel? Because obviously you've got Mali now as well, and I'm assuming is she quite verbal? So and you know, I can imagine it's hard for you, even though you probably learnt Derby shows his affection and things without having to be verbal. But do you struggle with that?

SPEAKER_00 25:34

I've never really struggled with the non-verbal side. Probably I'm a little bit more now because I think, like, for example, the other night I made Marley's supper and she was like, No, pizza. And I was like, Oh, okay. So, and then I was thinking, Oh my god, like I've been making because Derry obviously toast is life, so that's probably his meal like three times a day. So I was thinking the other day, I was like, What if this dude is like sick of this? Like, but he can't tell me, yeah, but he doesn't like kick off or anything, he's just like, Yeah, okay, yeah, and like I suppose like little things as well, like when they say, you know, I love you, or things like that.

SPEAKER_01 26:12

And I I often think, like, oh, you know, I suppose you're like one day, like you're dying just to hear those words like I love you, mum. Yeah, would that be fair to say?

SPEAKER_00 26:22

Yeah, but then he's quite he's so loving, and they say it's something like you know, he does this thing a lot where he like butts your head at you, so we wants a kiss, but they call it like the autism third eye, which means like they're saying that they love you. Oh, that's so good. So yeah, so he does it to the dog and to Molly as well.

SPEAKER_01 26:39

But that just goes back to you saying like actions speak louder than words, because even though he isn't saying that, like his actions are clearly displaying that. Yeah. And that's just so like lovely. Uh oh melts me. So I know we've touched on it a bit. So do you like what way do you think has he changed your mindset as a person?

SPEAKER_00 27:02

My how would I? I'm yeah, just appreciate everything, celebrate everything. You know, it's okay to have negative days, but don't let it consume you. So that's my mindset is completely changed to a year ago, completely changed. It's just there's that woman, she does the podcast and she does like the let them theory. Yeah, no rubbing. And she said on one of hers it was like kind of like I can handle it. So that's my kind of thing now is like say if the day is going pear-shaped before like 6 a.m., I can handle it. And I think a lot of people can, but just sometimes you're just so overwhelmed. But yeah, now I'm like, oh, I've got this, it's okay. So you're so lushable.

SPEAKER_01 27:44

Honestly, I feel often just gonna like climb over a second. Yeah, you're just amazing. So, what does everyday mindset mean to you in your life? Which I'm assuming we've basically just sort of touched upon. You've got that theory of even like you say, before 6am, you're like, you can handle it, people can handle it.

SPEAKER_00 28:03

Life is short. Do as long as it's not hurting anyone, and if it's legal, just get on with it.

SPEAKER_01 28:12

So obviously, there must be days that you are absolutely exhausted and overwhelmed. How do you keep going on those days? Because you've got no option but to keep going.

SPEAKER_00 28:22

Yeah. I do think sometimes it's like, you know, dairy just cracks on, so I'm kind of a bit like, you know, there there are times where there's tears, and I, you know, I'm quite open. I'd probably cry to anyone that we'll have five minutes. So yeah, there are days, but I'm it's just all about right, when you wake up in the morning, it's a new day. Don't like dwell on the day before. No, just get on with it, baby girl, just do it.

SPEAKER_01 28:49

No, and so even like if you're like absolutely exhausted and it's like 5am and you're like, I've been up for like three, four hours already. Do you just literally just get on with it and just go, I've gotta get through today?

SPEAKER_00 29:02

I'll whinge for the first couple of hours of the morning. My husband's probably like, shut up. But it's like, but then I'm just like, oh, do you know what? I've just got you know, my clients, and to be honest, seeing different people in the day helps you because you say, for example, I'm a bit like, oh my gosh, I just wish that I could just be at home, and then I go and see people and they lush, they just uplift you.

SPEAKER_01 29:25

So you just I was gonna say that probably is nice for you because you're seeing other people and you get to speak, yeah. And not always about Doe, is it? You can just talk about different things as well. So I suppose that's quite nice. You've got that little escape. So that's what's gonna be my next thing, actually. It was how do you balance the whole everything, like being self-employed, obviously with Dowie and Mali? Like, how do you balance everything?

SPEAKER_00 29:50

It's a bit of a juggling act, and I won't lie, I messed up in the Easter holidays. I didn't realise that there was the Easter holidays so soon. So I'd booked like my two weeks were like flat out, and I was like, I can't change anyone because otherwise it just messes the whole like thing. So they came with me. Like my clients are lush, like they're like, just bring home, it's fine. So yeah, it is a bit of a juggling act. I'm rubbish on my phone. So if any of them are listening now, they're gonna be like, each still hasn't replied to me. I will. So you haven't got the time. Well, if I do realise, I'm like, oh, it's two o'clock in the morning, it's probably a bit too early to but yeah, it's just juggling. I think everyone's kind of busy. Life is busy for everyone, isn't it? So yeah.

SPEAKER_01 30:36

And I suppose everybody that knows you like will understand, isn't it? Yeah. Do you know? They're all really good. That's the beauty of having the clients that you invest in. 100%. So would you say that becoming a mum has changed your approach to work or like to business?

SPEAKER_00 30:51

Yeah, definite. I'm probably well, I do probably think more that before I speak. So sometimes I don't, but mostly now. And just like say if someone is a bit short with you, or you know, I I don't take offence anymore because I'm like, I don't know if you know, maybe they've had a shit night. I don't know the ins and outs of their life, so you know, but yeah, just again, less judging and kind of just like oh you know.

SPEAKER_01 31:24

Do you find sometimes that that can be a bit like as in I'm assuming you know the line between no judging, but actually also you're being disrespectful? What's that thing? No, is it like to somebody else?

SPEAKER_00 31:37

Like somebody else, like do you feel that you've maybe I can't imagine you letting people walk all over you, but do you find sometimes that you do make- I give them I give I probably give excuses to people to kind of allow it kind of thing. Because I'm like, maybe Yeah, that's what I was thinking.

SPEAKER_01 31:55

I was like, oh how how have you balanced that without people taking advantage, maybe all actually walking all over you?

SPEAKER_00 32:01

Yeah. There's been a couple of times where I've had the well, piss taken a little bit, like especially when my stepsister passed away and it was quite sudden, and there was like one that just was like, Yeah, I'm really desperate. And I was like, Baby, I don't care about your hair right now. You know, so yeah, so times like that I'm like, find finding new hairdresser. I'm not the one.

SPEAKER_01 32:27

Yeah, that's good that you've got that approach because I I don't know about you, but I do find like people can be quite selfish. There's a lot of selfish people out there, and you are probably one of the least like selfish people, just from who you are, and obviously from what you do with your children. So do you struggle with selfishness? Um or are you just like, well, do you know what? I'm just a bit like you're not for me.

SPEAKER_00 32:55

So you you do you, like, I'm not yeah, it's not affecting the kids, so I'm a bit like not really asked.

unknown 33:04

That's fair.

SPEAKER_00 33:06

Maybe I'm too laid back, I don't know.

SPEAKER_01 33:08

No, no, no, it's just nice to see, like, like you say, what your line is of being too like, oh, maybe they're going through something, but also actually, hold on, you're being disrespectful.

SPEAKER_00 33:18

Before I think I would have been a lot more not sensitive, I hate that word, but like, you know, say if someone was being disrespectful, I'd be like, upset. Oh. Yeah, whereas now I'm like, okay.

SPEAKER_01 33:30

Oh, that's good though, I suppose. And like it's weird that you say that because I would never have thought you'd have been like you'd be like, sorry, what the what the No, yeah.

SPEAKER_00 33:38

I would have I'd have been like going home crying, be like, Oh my gosh, yeah.

SPEAKER_01 33:43

So yeah, that just shows though, doesn't it? Like that's a totally different side. So and that's obviously better, I think. Um so what keeps you motivated to keep going, like with your work and things, like what what keeps you motivated?

SPEAKER_00 33:57

The kids, really, because they're they're watching you, aren't they? They're always watching. So as long as you know I've always said, even from Dewey being small, as long as you know my kids are kind and they've got some good work ethic, I don't I don't care. Yeah, as long as they're good.

SPEAKER_01 34:15

I love that. So I just want to touch obviously you might talked about your mental health and things and how your own mental health has been affected. Do you think there's that support missing for parents with like a SEN child? Yeah. Do you think because obviously I can imagine you're probably at rock bottom at one stage trying to figure all this out?

SPEAKER_00 34:37

Yeah. I can't I I felt as though he was diagnosed and it was kind of like that's it. And so then I had to say, like, I'm really struggling for it to kind of you have to say like I'm really struggling to get extra support. Maybe I'm wrong, and maybe it was just luck, but yeah, that's how I felt really.

SPEAKER_01 34:59

So did you ask, like did you say, look, I'm really struggling mentally, I need support?

SPEAKER_00 35:04

Yeah. So and then that's when it came, and then it was m they were mostly just like concerned about like toileting and stuff, and then once that was done, yeah, we were but they do say like if you ever need us like thing, but yeah, it just goes. Yeah, yeah.

SPEAKER_01 35:20

I can't imagine like I can't imagine like having to deal with that. And like fair play to you for actually going and saying, I'm struggling and I need help, even though you probably didn't feel that you had that much support. But how many other mothers out there are struggling and like you think, Oh well, we've had the diagnosis now, just gotta get on with it. Yeah. What they're how that impacts them, isn't it? Yeah. It's such a shame. So did you go to your GP or Yeah?

SPEAKER_00 35:48

So I think I spoke to his health visitor and then I went to the GP and I I said like everything, and she was like, Look, the the GP was amazing. She said, You can't change the situation. You've just got to kind of work on yourself kind of thing, and how you Yeah. And that was probably what I didn't want to hear it. I didn't want someone to go, look, you can't change it, but it is what it is, so yeah, no, I'm glad that I did that because I've never it was really scary being in that mindset, and I think it just stems back to like all your assumptions of how parenting's gonna look versus how mine actually looks now. Yeah, I think it was a bit of a wobbler.

SPEAKER_01 36:31

Because I um I'm not like I'm not comparing, but obviously I you know Jesse Nelson's story, and I watched like her videos and things, and I can imagine it was the same for you because when you're pregnant and you've got your first child, and like you say, you just think about these oh it's this, this, this, that, and all of that. And then when you started to realise that basically that's like snatched away from you. And like I find that like a form of grief. Yeah, it is, yeah. So you even though you obviously, you know, dare we're here and he's healthy and happy, whatever, that I can imagine you're probably grieving at the same time.

SPEAKER_00 37:03

Yeah, you're grieving the life that you thought you were gonna have. Yeah, yeah.

SPEAKER_01 37:07

And that's one thing I took from Jesse Nelson's story, because I like you don't think of any other alternative when you're pregnant, and do you? And you think, you know, about first Christmas and birthdays and all of that, and like you say that's just like ripped away from you in a sense. Yeah. So like that's a massive thing to do with mentally. And I think that there should be more support for that because like I do think it is a form of like you're grieving something that you thought you were gonna have and you you haven't. Yeah. Yeah. So I yeah, I can't imagine. Yeah. So making a difference, which I think you're gonna be absolutely incredible at. So we spoke before, you're always uh raising awareness and even planning a high rocks challenge to raise money. Yeah. Can you tell us more about that?

SPEAKER_00 37:56

So I've decided that me and O's are gonna do the Hyrux in this uh Parkascarlett Centrality. I think it's on the 29th of June, and we've decided we're gonna raise money for Carlo Neyron, which is the unit that Dewey's in. So yeah, it's something I think it's probably like to if we've got that to keep in mind, I uh I can't have an excuse to quit.

SPEAKER_01 38:22

So it's like it's a goal, but also something very important. Yeah. And oh, I literally I just think that's just such an amazing thing. And I know you're terrified because I'm doing it as well, and I'm terrified, but I just think like, wow, like you've basically gone, I'm doing that. Yeah. Well, we're doing that. Louise has been dragged into it as well. Yeah. So what are you what is the like are you like raising money? So are you just having asking donations?

SPEAKER_00 38:51

Yeah, so we'll probably set up GoFundMe in the next couple of weeks, and then yeah, if the school can, you know, because it's many for simple things like the bus for this women and you know, stuff like that, we don't realise that they need, yeah. I think it's schools as a whole, really. They've got to pay these things themselves, so you know, so yeah.

SPEAKER_01 39:13

Like that's such a like amazing thing, and it just gives other children, not just Derry, opportunities to do different things. So why do you why is it so important to you to like use your voice and be like like An raising awareness?

SPEAKER_00 39:27

Because I think I am Derry's voice, so I want to get it right. And I think O's will say the same, we are his voice, so when he's older he can see like we've pushed and you know we've shouted when we needed to and pushed for him to have the best out of every situation that he's got. So yeah.

SPEAKER_01 39:52

Like what change would you love to see in the future?

SPEAKER_00 39:56

I would probably say more support, this is like off topic, but definitely postnatal and prenatal for mental health. And I think after diagnosis follow-ups for the parents, you know, children are really important, but the carers, you know, sleep deprivation is hell. So I think there needs to be more support around that. I think possibly with the whole like panel thing with the education, that needs changing.

SPEAKER_01 40:29

Yeah.

SPEAKER_00 40:30

I don't understand it enough, but I didn't like I didn't like it.

SPEAKER_01 40:34

I don't think it's changed though for a long, long time. Because this is why I asked about the age seven thing, because obviously I've worked in schools and I've always been led to believe that children won't even get looked at or diagnosed until they're age seven. Because how can you possibly say that a child is autistic before they're seven? Obviously, that was the different story for you, and it probably like you say, it probably depends on the level of autism. But I just think to myself, gosh, how many children have suffered and struggled until seven, even though they might not seem it as much, and then yeah, potentially might not even get in a diagnosis in the end. And like that whole panel thing.

SPEAKER_00 41:11

Like I just find it so well, it's just for me, it's just strangers reading, you know. The the schools, even for the schools, it must be so annoying that you're sending all of this eviden evidence, you're writing about a child and then you're giving it to these people, and they're like, Nah, not this time. Like we went to panel four times for Dewey, four times, and I'm like, he literally on paper could not be more like your standard. Do you know what I mean? So yeah, I've I find it really I f I feel for everyone in that kind of position, you know, schools as well. That must be really hard for them to watch a child n struggling. Yeah. And no one's listening. Well, the higher people.

SPEAKER_01 41:56

No, and like you just want to say, like, come out and see for yourself, spend a week and watch. And I I just can't understand like how that isn't happening. Yeah.

SPEAKER_00 42:04

And nine times out of ten, they're they're reading it and they they probably wouldn't know the face to the paragraph that they're reading.

SPEAKER_01 42:10

I just yeah, that's just so sad. And it the longer that goes on, the only person that's suffering is the child and the parents.

SPEAKER_00 42:17

The hardest thing I felt with all of that was they had to with well, with all of them, I think they do like a psych evaluation, psychosensory profile, and that. So you know, that I was fine with. But one of the sentences, and he was three at this time, it said, Derry seems to have no sense of humour. Oh my gosh. And I just thought, how like maybe I'm sensitive in that way, but I couldn't read anymore because I was like, How can you he, you know, like what are you want- do you want him to crack a joke?

SPEAKER_01 42:48

Like, I'm not sure where you I just find that such a bizarre statement. And yeah, like even if someone said that about Isla, I'd be like, you know, that maybe other than age three have a sense of humour?

SPEAKER_00 43:00

Maybe it's their terminology, but I think maybe it needs to be up it needs to be updated. But yeah, so that part of the thing needs changing. Do you feel that things are moving towards that way from what you've seen? Yes and no. I know there's like they're doing a lot of like cut it all boils down to money, doesn't it? Which is really sad. Like it's the children that get and it's the staff because they're trying their best with the resources they've got, you know? But yeah, it just all boils down to money and who's making those decisions.

SPEAKER_01 43:38

So yeah, it's it's definitely something that needs to change, that's for sure. I just yeah, hope that one day that is the case. So outside of everything, what do you enjoy doing for yourself? Which is very important.

SPEAKER_00 43:55

Enjoy spending time with my friends, going out. I do, I can't believe these words are coming. Out of my mouth, I do enjoy the gym now. Oh wow. Yeah, I know. Love it. Gym girly. So yeah, so we go like three or four times a week to Leiki and to catalyst strength then. It's just lush, like everyone's so nice in all these classes. So it helps, yeah.

SPEAKER_01 44:15

Do you feel that is good for your mental health? Oh, 100%. 100%. Yeah. I can imagine. Because like, yeah, going there, especially if you're feeling like exhausted, overwhelmed, and then probably doing a workout, you probably feel that buzz is a bit.

SPEAKER_00 44:28

Yeah, no, 100%.

SPEAKER_01 44:29

Oh, that's good. And what keeps you like grounded?

SPEAKER_00 44:38

Yeah. Probably my husband.

unknown 44:41

Absolutely.

SPEAKER_00 44:42

Yeah, no. He is quite, yeah, he's sensible and yeah, him probably and family, but yeah, owes.

SPEAKER_01 44:49

Is he like really, like, really supportive in anything that you do? Yeah.

SPEAKER_00 44:53

And I do think sometimes say like, because you're both running on empty, aren't you? So like sometimes I do feel like he's probably better supporting me than I am to him, if that makes sense. So I'm kind of aware of that now. So I kind of try when he he's feeling a bit crap, I need to be a bit more mindful, like rather than being like, girl, it's all about me. Yeah.

SPEAKER_01 45:15

I suppose you both pick each other up because I can imagine you both one's got to take the lead a bit for the other one to rest and things like that. Because yeah, like, yeah, I just think you're amazing. Girl. So if there's a mum listening who feel feels like overwhelmed or alone, like what would you say to her?

SPEAKER_00 45:35

Girl message me, no joke. Well, you can message me. It's important just feel those feels, be upset, but just don't stay there. You've got an amazing kid, and they'll flourish in their own way and they'll be amazing at what they wouldn't be amazing at. So yeah, just yeah, it's important. Feel the feel, don't feel guilty because you know, some days are shit. Just feel it, and then the next day, brush yourself off and be like, right, let's try again.

SPEAKER_01 46:04

Yeah, yeah. Oh, I love that. Like, what would you like people to take away from your story? Like, is there anything that you really want people to like take away from this conversation?

SPEAKER_00 46:14

Um just kind of like if you see someone probably maybe like an older person like Dewey stimming and stuff, maybe like even just say hello, just my thing is just be kind.

SPEAKER_01 46:28

Yeah.

SPEAKER_00 46:29

Just be kind, just watch your words and just be kind.

SPEAKER_01 46:31

Do you think find Dewey is quite sensitive to people? Like, do you think he can pick up vibes?

SPEAKER_00 46:37

Yes, 100%. He picks up on vibes so quickly. And like it's even before you've could even kind of like notice. Yeah, yeah. He's really yeah, so I think on the whole, well, every autistic person that I know, that is one thing. They right they are quite good with picking vibes and stuff.

SPEAKER_01 46:54

Yeah, because I noticed, I've been I've been saying I'm gonna bring this up throughout the whole conversation, but I noticed obviously your niece's party, which and I I like obviously I saw Dewey and like he just came over and he just stood next to me, like he didn't do anything, but he just stood next to me. And I just remembered thinking, like, oh, like I think like he likes me. Like, and I didn't like make a big fuss or anything, I just said, Oh, hello Derby, and like you know, he didn't move or like do anything back, but I just felt like oh like he obviously felt that he could just come and stand next to me. And then I also wanted to say as well, because I remember I messaged you after this party, and I just thought I was watching you, and like you had Mali and Derwe there, and Derwy was like a bit unsettled to start with, and I was just watching you as a mum. Like, I feel like I get upset about it. I've spoken to Hannah about it, and I was like, I was just watching you, and you were going from Derwe, like dealing with him. So I'm getting upset now. I was just watching you dealing with him, like doing what you needed to do with him, and then going over to Mali, like changing your parenting style, going back to her, doing what you needed to do, then back over to Derby. And like you were just doing it, like in your stride, you weren't even, you didn't even look stressed or overwhelmed. Like, and I just thought, oh my gosh, like what an amazing mum who can just like go from one child to the other, both with different needs, and you were meet meeting both of their needs. Like, I just thought that was incredible, and that's why I messaged you after because I was like, wow, like yeah, you just stood out in that party, and I just thought, yeah, you're such an amazing mum. Thank you. But yeah, I just wanted to say that because life definitely has been on my mind. Oh okay. We'll get back to um but yeah, I just there's a couple of a couple more questions. Like, what is one thing you wish the world understood about autism?

SPEAKER_00 48:50

They're amazing. Autistic people, like you know, they're all so different. When you meet one, you've met one, like they're all so different. But they're all just class, you know. They're um th they understand way more than what we give credit to. Yeah. Yeah, they're just class. I think, yeah. At least you know you where you stand with them, because most of them just say it has an air.

SPEAKER_01 49:13

No, definitely. And and like I think I'm a lot aware, and like just from what I've like, you know, even from today and what I've watched, and like I said, I often get videos on TikTok and things, but like like even like that time at the party with Derby, I just felt new instantly, just because he came and stood next to me. I was like, oh, he actually feels like he comes next to me. Which like but for people that don't have that awareness, I often think like God, how would they react, isn't it? And it's such a shame because if people just open their eyes a bit more and like open their minds and actually learn about autism and children and things, it's makes a massive difference. So the very important question to finish. If Dewey could hear this in the future, what would you want him to know?

SPEAKER_00 50:00

I've actually been really organised and I've done a little something.

SPEAKER_01 50:04

Is it okay if I you carry on because I'm really like this is the most important question.

SPEAKER_00 50:08

Oh Dewey Vachni, ni more prodotti. You've taught us more about life than any adult ever has. You show us love, kindness, humour without the use of words, which is so clever. You are beyond clever, and I hope that you always know that and believe in yourself. I hope you still love swimming, plastic water bottles and footballs, and if Heyduggie is retired by then, excellent news. I hope you always know how loved you are and how grateful we are of having you in our lives, and I hope in your I'm yours and Mali's Mum in every lifetime.

SPEAKER_01 50:44

Oh, that's so beautiful, Sean. I love that. That is like, yeah, and I feel yeah, you couldn't say any better. That's so yeah. I've actually been organized. But I guess like it's a big part of your life, isn't it? And yeah, I just think you're amazing, and yeah, I think everybody is gonna love listening to this. Like I said, so many people have been like, oh my gosh, can't wait for this, can't wait for this. Thank you. So yeah, I can't wait to get it out. So yeah, so I hope everybody has enjoyed this episode. I definitely have, and I hope you've all taken something from it. I'm definitely gonna be sharing Siobhan's GoFundMe page, and basically I'm gonna try and raise you as much money as possible. It's so important. And I'm sure Siobhan won't mind if anybody wants to message you, um, if they're going through their own journey, maybe, and they want a bit of a chat or support, then yeah, just give her a message. But yeah, thank you so much. Thank you, Bib. Thank you. And yeah, I hope everybody enjoys. Thank you.