Episode 2: siblings

~music - “Wake me up, loud as clouds.. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...

Lauren Fenton  00:15

This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children.

Rina Teslica  00:15

I'm Rina

Lauren Fenton  00:24

And I'm Lauren.

Rina Teslica  00:25

And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.

Lauren Fenton  00:39

Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of a disabled child or adult. So expect bad language and quite frankly, some brutal honesty.

Rina Teslica  00:59

Because really, what the f**k is normal anyway?

~music - “wake me up loud as clouds, all my love for you”

Rina Teslica  01:02

In today's episode, we'll be talking about siblings and sibling relationships, parenting when disabilities in the mix, and the decision to have more children. I'm the mother of one, the lovely Lua and having more children is definitely on my mind at the moment. So, I'm especially excited to listen to our lovely guests and Lauren's perspectives on having more than one child.

Lauren Fenton  01:36

And for those who have not listened to the f**king normal before or have forgotten. I have two children Bea who is six with special needs, and Olivia who is eight. And I am absolutely delighted to have not just one guest today but two guests joining us to talk about this topic. We've got Gemma and Jess. Gemma Sherlock is an interior designer and mum to two boys. Jasper who's six and Spike who's three. And she's a really good friend of mine. We actually met at a physio class that both Jasper and Bea went to. Jasper has cerebral palsy and drug resistant epilepsy. He also has hydrocephalus I think I said that right.  And Gemma is a wonderful mum and a great drinking buddy to boot. I'm also really excited to have the lovely Jess joining us. Jess Honeyball, best surname ever, is a TV producer and director. She's done lots of fantastic TV. The one I want to talk to her about the most though is First Dates. She's also a mum to three boys, including twins. Oh my god! The twins: Dylan and Freddie are four, nearly five, and her littlest Leo is two. Welcome Gemma and Jess.

Rina Teslica  02:49

Hi, how is everybody? When I came in, you were both saying that you're very tired today. So what's going on with that?

Gemma Sherlock  02:56

Urrgh, it's just having children isn't it. It's just completely exhausting. Yes, my night was broken. I know Jess' night was horrific because Leo was vomiting most of the night.

Jess Honeyball  03:08

Yip the whole night and then woke up at four wanting some milk which I foolishly gave him because I was you know, it was four in the morning, and then he very promptly turned around and just 'puke' - it just all came out again.  Yeah - so two bits of sleep - I'll not go into that.

Lauren Fenton  03:29

Thank you for coming. Oh my gosh, especially after that night!  I mean, why don't you kick us off Gemma and tell us a bit about yours and Jasper's story.

Gemma Sherlock  03:38

Yeah, I mean, as you said, Lauren, we've known each other for most of Bea and Jasper's lives now. And I think when we met,  they were still quite little because they weren't walking yet, they were just learning to walk. So I think you and I were still in the kind of aftermath of the hurricane of understanding, you know, that we had children that had complex needs, and we we didn't know where they're going to walk and what life was going to be. So we've definitely been on this journey together. And the same was true with Jess and I because we've known each other for years and years and our decision to have children.  Obviously, we didn't have our children together but our decision, we talked about (laughing) but you know, we were there in those times together. So, for me personally, Jasper was born in 2015. And we'd spent a good few years trying to get pregnant with him. So he was a long awaited, joyful, much wanted little person.  And yeah, we'd had lots of rounds of IVF, including miscarriage, and yeah, we couldn't wait for him to be born. And when he was born, it was a normal birth. It was a little bit delayed, but unfortunately for reasons that we'll probably never know he suffered a massive brain haemorrhage. Probably a few hours after he was born, and was rushed immediately to Great Ormond Street and had his first brain surgery there in the early hours. And we were there, sort of on and off, for - well we were there for the first three months and then on and off for six months. And he underwent lots and lots of surgery in that time. You know, probably at least 10 surgeries but most of them on his brain.  But today, he would walk in here now and you may not even notice that he had a disability he's got mild cerebral palsy on one side, which is probably due to scarring on his brain from the from the initial bleed or possibly surgery afterwards. And his biggest struggle in life is his epilepsy, which is a kind of drug resistant epilepsy. So, that is just something that we have to manage all the time. So lots of hospital visits and night seizures and not much sleep. And shortly after his birth he was fitted with shunts that drain water from his brain because he has a condition called hydrocephalus which is water on the brain which happens when you if you have something like a stroke or a bleed in the brain. You get blockages which stop the water flowing through your head into your spine. So he has shunts which allow that water to flow into his stomach and yeah. So, the decision to have him was very much like a positive decision and the trauma of afterwards probably put us off having another one for some time. That's in a nutshell how Jasper came to be yeah.

Rina Teslica  07:06

Wow, wow.

Jess Honeyball  07:08

Truly emotional still hearing you talk about it. He was so little having those surgeries.

Gemma Sherlock  07:12

It was insane when you look back at the videos of him I mean and also blows my mind that anyone is able to do brain surgery on a little baby over and over again,

Lauren Fenton  07:20

And don't underestimate yourself as well. When you're going through that, you are just going through it, you're like, you're in it - but, I always find when I think back to traumatic times in Bea's little life visualising myself in that situation is quite hard as well like how did you get through it? How do you know it's really hard?

Gemma Sherlock  07:39

I don't know because I, obviously, and we'll talk about this I'm sure, because second time around with Spike I remember the midwife, ahh not the midwife - the health visitor who comes to see you remember they do that surprise visit and they turn up I think she thought I was some sort of deranged mother possibly needing like to be shipped away because I was just grinning and smiling and like: everything is just so amazing!! She was like: "Is everything okay with you and the baby?" and I'm like "yeah, I'm in my own bed, I'm breastfeeding him, I've got my boob out, I don't have to like weigh a nappy. Like - my loo is there". You know, I went from giving birth, to being in parent accommodation running across the road wondering 'Is he going to make it for the next five, please let him make it for 10 more minutes, please make it tomorrow and then into surgery, out of surgery, into surgery out of surgery and the trauma after the surgery. Nevermind like what's going on after you give birth with your body and all of that stuff, but anyone that's had a baby it's . . . and then all the stuff that's on top of that. And you also expected in hospital to just, most of the nurses working there, when I was there, were quite young. I mean, they were proficient but a lot of them hadn't had children. So there's an assumption that you're the mother, you must know what you're doing. Well this is my first child, like I didn't know how to change nappies or hold them or you know, any of that stuff I was like,

Rina Teslica  09:00

Yeah let alone and you know when they're connected to all the bits . .

Gemma Sherlock  09:01

yeah and all the tubes and the beeps and it's all going off, all night people coming in. So it was six months of Yeah, insane, insane trauma when you look back on it. But hopefully that's my trauma not so much his.  I mean,  obviously it is but he doesn't know any different. So. We definitely made a decision I think about a year after he was born, Rowan, Rowan's his dad, my husband, and we just said we are not having any more children. Like we just couldn't do it to Jasper. Can you imagine if it happened again? There's no way we can do that . . . sure, sure enough . . . times moved on . . .

Jess Honeyball  09:20

We also had an IVF journey to fall pregnant and I had recently been diagnosed as celiac. So anyway, for that's just not worth getting into but my body hadn't quite healed. So I just wasn't able to get pregnant. They couldn't find out a reason why, but I think that's probably why.  And the first round was, they didn't even get to putting any eggs back because all the eggs had stopped developing when they fertilised they didn't know whether that was a lab error or an egg issue or a sperm issue or what so when it came to the second time round, "we got a good egg haul again, you know, but we don't know if the same thing is going to happen". So even though, how old, I would have been 35, They were "I wouldn't normally recommend you put two back in but why not? This might be the only chance you get because there was sort of no explanation for what had happened before". So we did put two back in and then they both were viable you know they were growing so I got really massive, two babies, two placentas . . And you still looked amazing! . .  I'm not sure my tummy now would agree with you, but had a normal, like on the face of it, a normal pregnancy and had scans every two weeks after certain amount of time. But it was a shock so that when when the twins were born, Freddy was the first out and I was you know, in a kind of very different place having pushed for I think, an hour or something and then hadn't begun, this isn't about the birth but it was pretty horrific and then had an episiotomy and then by I mean hearing Dan describe what actually happened when they use the forceps to get the babies out. He's sort of imagined, this sort of delicate, like pop, and it was you know, he said it was like mediaeval, like feet up, like three or four doctors hanging on the back of this obstetrician.  Gorry times, so she, yeah, so when Freddie came out, I was like: ones out, right I'll just kind of regroup. And Dan was like . . Yes, that to. But he was "hang on. I think there is, is there something wrong with Freddie's arm?" and sort of went over to were Freddie was, I mean, he had sort of come on my chest for a bit. But you know, I was just like, so wobbly from all the drugs. So "I don't feel like I can hold him" like, "I think maybe just take him away for a minute. And I'll just get pushing again."  And they noticed that, yeah, his arms stopped below the elbow. He didn't have a forearm or a right hand.  And I don't know if they noticed at the time but he had a fixed elbow, so he sort of can't - It's a real shame in terms of any prosthetics for now, because it's quite limited. The use of prosthetics for him or, you know, at the moment anyway.  Amm, and then I pushed out Dylan, still like 45 minutes later, which is a really long time for twins. So that was all pretty difficult. And then I remember so vividly, even though it's in a kind of,  you know, on a different planet. Dan saying to me in recovery, you know, listen, we need to tell you something about Freddie.  God, I'm going to well up . . . So, that, that was a big shock.  But you know, he's really healthy otherwise.

Gemma Sherlock  13:22

And, can I just say also as his godmother, he's just the most charming, handsome little boy, I mean, they both are, all three of your kids are, but Freddie - he's just, he's just got the 'je ne sais quoi', he's just dreamy. And he's just he isn't held back by his arm. Well of course he is, but not in a way that he would know or that would that he's just happiness. He really is . .

Jess Honeyball  13:46

Thanks, he is - He's an asshole to his brother! - The younger one.  But but very competitive, which is probably why, yeah, as a twin or whatever. He's certainly most competitive of all the boys.

Gemma Sherlock  14:03

But can I ask you is that, is missing something like that on, on prenatal scans? Is that quite common with twins? Or . .

Rina Teslica  14:12

Did they pick it up even in the scans? Or

Jess Honeyball  14:14

No it was never picked up, so it was a total surprise, total shock, which is kind of odd when you have two weekly scans? Yeah. So and then there was a kind of investigation? Well, the lady who's sort of the head, who does, I can't think of what her her title is. But she came in and was like, obviously, slightly kind of trying to manage and we wouldn't have done. A friend, good friend of mines consultant, and she said, you know, you could sue and that wasn't in our interests, but it would have helped to have known perhaps to prepare a bit. I don't think it would have changed our decision to go ahead, you know, of course not, but it Yeah, it would have helped those early weeks, which are so hard anyway. And you know, I just had lost all control of my bladder for months! And so just dealing with twins and your own body, as you say, and then sort of, almost like as the secondary thing, oh, and actually I have a baby who's got a disability and kind of realising that his life will be full of challenges that yours didn't have, or childhood anyway will be full of challenges that you didn't have,

Rina Teslica  15:05

or that you even understand because,

Lauren Fenton  15:31

exactly, I think our experience of disability, certainly my experience of disability up until my Bea was born, was very, very little. And you've been kind of, unfortunately, socialised in such a way, and brought up in such a way that you probably do have these awful preconceptions, and fears - yeah

Jess Honeyball  15:55

Just not much exposure, no, to anybody with disability, and a few of my friends that one of my friends, Will, said, "I went to school with somebody with one hand, he was the best football player on the team". And, you know, some people have, you know, one person perhaps, or certainly with this kind of physical disability, and I just hadn't met anybody, I was like, what this is, anyway. 

 Gemma Sherlock  16:20

So, yeah, along that line, I mean, at primary school, I just went to my local primary school we had kids with, with all sorts of disabilities and challenges, and that was totally normal. And then going off, I went off to like, to private school where you're selected based on your academic credentials, and nobody who's like,  got the money and, and like, selection process to get to that point, then they're not ever looking for anybody that's, that's got difference, or, you know, challenges in that way. So the segregation happened for me quite early on. And that's so that's just so terribly sad. And I really, I don't know how to change that for for our children that you know, in any, and even now, in the state system, there's still a massive segregation. And anyone with any complex needs, probably at some point will end up going to a really specialised school.  Because there just isn't the care and money to, to keep them in mainstream system,  to save,

Rina Teslica  17:19

but then your children will have that sort of extra little thing because they're used to a sibling, that's got a disability, so that's gonna just change the way that they perceive the world. Totally from other children, you know, so I mean, I've asked you about Olivia, and how she talks about Bea with her school friends and how she introduces Bea and it's, you know, so much more worldly than her peers.

Lauren Fenton  17:41

Yeah, I think that is a real benefit to the siblings of a child with a disability that they have had a very early exposure to differences within that family. I mean, you could choose to have other things as well, if you've got a parent with a disability.  There are definitely advantages in terms of how her, for Olivia anyway, in terms of how her world views been shaped, and how she how kind of matter of fact, she is about everything. So because Olivia was there before Bea, she was nearly two when Bea was born. And we we, you talked Gemma, about wanting to put off having another child for for a long time. I'm not gonna say Olivia was like a super easy baby. But she was she was pretty straightforward. So we kind of wanted to get on it again. We weren't getting any younger. So we tried to get pregnant again quite soon after Olivia. So Olivia was 21 months when Bea was born. And so there's quite a small age gap. And I think the the trauma that you kind of described in those early months, we definitely went through that with Bea in terms of, you know, she was in hospital for a long time, we just kept getting more information and more diagnosis and lots of uncertainty about what 18 q deletion syndrome was what does that mean? What's her future look like? But we had this additional factor in that we had already had a child who was one and like she was staying with my mum when I was in hospital with Bea and then I just didn't come home. And then Bea didn't come home for quite a while. And kind of managing that at that time was obviously an additional kind of worrying concern. I don't know what, when she was so little Oh, she was so little then that now. She doesn't remember a time pre Bea and you know, she's always been in her life and they're just wonderful together. But I think all those early days of hospital appointments and Bea didn't look the same as other babies. She had this huge kind of black hearing aid with wires. She had her feet in either plaster cast or like sort of orthopaedic shoes and she was fed from like special bottles and you know there was lots of different kinds of things different accessories of your like that she she had and Olivia just really took it as well you know that's my baby sister you know she didn't know any different and she became very matter of fact so it's just no yeah really normal like normalised it and was great at telling other kids. I remember once going into a friend's house and it was just after Bea had got her boots so she had like little boots and bar that kept her feet in a certain position. And they were like this big metal bar in between them. And then like strapped on bits, which just was a total pain to joining the shoe. Yeah, to keep her feet in turn out. Yeah, like, and the girl who my daughter's friend was, 'that is so cool'.  Cuz she sort of saw it as like some sort of like a skateboarder or whatever. They looked a bit like that. She was just so mesmerised by her boots. And it was the nicest thing she could have said. Yeah, and then yeah, exactly. Olivia Big Sister, even though she was about two at the time was like super proud. Yeah. Yeah, like 'those are her boots'. You know.  I just love that I love that kids can be so yeah unfazed by these things, because they don't come with this baggage and preconceptions, and they just take the world as it is around them. They take on face value.

Gemma Sherlock  21:36

What? Because Jasper's got a half brother and sister who are quite a lot older. And Jim is his older brother, and Georgia, his big sister. And we had a quick conversation about how Jasper's disability had sort of had, it had an impact on their on their life or how they felt about things. And Jim was quite heartfelt about it. He, he obviously grew up in a similar background to me, like quite privileged, middle class, everyone's the same, everyone looks the same. And then along came Jasper. And he just said it opened his eyes to the fact that disability is normal, you know, and that he was quite shocked by the reaction of some of the people around him who had just had no concept what it is to have a family member or friend with a disability. And they both adore Jasper but it had a, retrospectively, a big impact on them as young people in their late teens, early 20s. For the better, you know, what an incredible thing to have come into your life when you haven't really been exposed to different. It's really moving. He won't mind me saying because he was I know it's a bit mushy, but he's such a sweetheart and I just, I just adore him. I think he's incredible. And yeah, he's they don't see they don't act strangely around him. And they don't see it as different in the same way that Olivia feels about Bea but it but it is different to them because they don't have any experience of it. But yeah, it's open their minds and their eyes.

Lauren Fenton  23:16

That's so lovely to hear. Oh, gosh.

Gemma Sherlock  23:19

Yes but he sent me a message last night because I'd asked him this very question. And he said 'the main way in which it has impacted my life is that these things can happen to anyone . . aww Jim . . I'm going to cry . . 'These things can happen to anyone. And thatmush. it's so important to have the support and care from a strong family. I've also noticed the ignorance of many people who have never had a disabled person or family member close to them, which is totally infuriating. But you can't blame them as you just don't get it until you're faced with it. I understand so much more about his disability and I don't even see it as a disability more as a superpower. He might experience life in a slightly different way to us, but it will develop him in a way that we won't understand. It's made me research and understand a lot more about challenges faced by others. Sorry, that's a bit mush.  But he's just opened my heart so much and I love him to absoulute bits.

Lauren Fenton  24:14

Aww

Gemma Sherlock  24:15

Aww and I know that Georgia will feel exactly the same.

Lauren Fenton  24:19

Yeah, and actually, that's a genuine point maybe for a future episode, it would be great to have somebody on that is an actual sibling, we're just talking

Gemma Sherlock  24:29

what it means to have another child.

Rina Teslica  24:31

Yeah, I mean, for me, the reason we wanted to discuss this is because I'm at that stage so like it's been six years nearly since Lua was born. She was my first she massive trauma with her. We spent several months in hospital kind of touch and go for ages. She has a lot of "accessories", with the tracheotomy and the ventilation and all of the amazing clothes (all agree) I mean we try. We try . . . Thank you, thank you. And my partner and I are kind of at that stage, like, we're not getting any younger, we do want more children. I've always been brought up, when we've discussed it with family members, it's always been there, you either have to or you have none - sort of thing, because it's, you always think, Oh, they're going to be so lonely being alone. Why not give them a sibling? But then obviously, when you've had such trauma with a child, it's like, well, will I put myself through this again, what if having another child impacts the way that I am with my previous child? You know, they require so much attention and all of the hospital admissions and all of the sicknesses. Can I, as a parent, give as much to another one? So I'm very interested to kind of hear your decisions to have more children. And what were the pros and cons? Essentially?  Yes, go - Jess - what about you?

Gemma Sherlock  25:52

I think you, I mean, you were already having to deal with many of those things without a choice, because you had twins. So you already had two and you already had somebody fighting against it and trying to give to both? I don't know if that's relevant. Not necessarily the decision to have another child. But . .

Jess Honeyball  26:12

it's weird, because in our minds, think in my head, I'd always wanted three kids. And then when it was just taking a while, and then when we started IVF, yeah, this is never gonna happen. It's too late. And then having had twins. I mean, it wasn't that the first time around was so great. And we were like, Yeah, let's have another one. So it was, I think, in many ways, and this sounds so selfish, that it was like I was robbed. Oh, that like, wonder, you know, that kind of baby bubble? The magic? Yeah, the one. Like you have with Olivia, the, that felt like, you had that proper bonding experience. Of course, I bonded with both the twins. But it was like firefighting for so long, and getting routines and blah, blah, blah, and also - So Dan, and I were like, well, you know, we do have other eggs in the freezer. IVF wise. You know, let's just not go there. Why don't we just see if this happens naturally. And I really, I really didn't believe it would happen naturally. And then I guess just, I had not eaten gluten, you know, since my diagnosis, and I think my body was just ready was healthier for whatever reasons. So then 38, so the boys were nearly three, when Leo was born and conceived naturally, and but they're so I remember I was really, I was denied of lots of things when I was pregnant with twins, like, I don't know why when I went to Hypno birthing class, they just laughed, like you can't have twins and do Hypno birthing. When I when I was at the hospital, the consultant was like, 'ha ha' when I said I would like to take the birthing suite. Okay. So with Leo, I was like, I really want to do those things. And they said, Oh, hang on a minute. When you when you had your last pregnancy, Freddie was born with, so the diagnosis, he has been given his Poland syndrome, which is that wasn't just his right hand that was missing. He also has some muscular differences. So he was born without his right peck, without his bicep and only one of the tricep heads. So and lots of Poland syndrome doesn't affect the rest of your body. But you do have this absence of the right peck muscle. So anyway, he's had a muscle transfer surgery three months ago, which has all gone really well to move the lap to here. But because of this diagnosis that took ages to get and nobody at the hospital knew anything about this, and it was very unusual, I gather. So they said, Oh, well, you know, it's like you might have this again, I don't think you can go into the birthing centre. This is rubbish. It makes no impact on the birth. It's just a purely physical thing. If even this were to happen, there's no sort of other condition that would Yeah, that would impact the aftercare being in the birthing suite rather than the ward. So I had to get letters from Great Ormond Street. And so that was all sort of a fight.

Gemma Sherlock  29:11

So did that add a fear of the birth?

Jess Honeyball  29:14

Yeah. Well, and also it's, we had lots of tests and there's nothing genetic in Dan or I, It's just a developmental thing, like seven or eight weeks, the arm didn't develop. And, you know, there were these differences on his right side. But it's so random. It's sort of one in 20,000 live births, I think have a similar sort of developmental difference. Limb difference. So yeah, lots of letters saying this. I was likely to have this again as that person over there, you know, it's not sort of me related. But anyway, the decision to have another child other than wanting to go to baby cinema again, because frankly, that's enough reason to have another child.

Lauren Fenton  30:00

Oh that's why you should have another child!

Rina Teslica  30:02

Yeah? yeah -Okay, that's it, hey, I'm leaving and I'm going to go procreate!

Lauren Fenton  30:06

Also for anyone who doesn't know baby cinema is basically like they show films in the day that you can take your baby to, and just boobs out if you're breastfeeding . .

Jess Honeyball  30:18

Also you get a slice of cake with your ticket! and a cup of tea or coffee . .

Rina Teslica  30:23

I mean, which things are big, big things that I just never experienced! You know, why not have another child just to go to baby cinema?

Jess Honeyball  30:33

Exactly - I could only go with another person, because I had two f**king babies. Other than the fact I wanted to go to baby cinema, I mean, genuinely, that was probably 80% of the reason I had another child . .

Lauren Fenton  30:44

I might have another one for the same reason . .

Rina Teslica  30:46

OK let's do it together, be pregnant at the same time, so that we can go to the cinema together! (laughing)

Jess Honeyball  30:53

It was about having that experience. And I really I don't know if I even want to say this. I think somewhere buried in me was that I think I sort of wanted to know that I could have a typical baby.

Rina Teslica  31:07

oh - Amen! That's that's the big, big, big thing for me. Oh, 100%. Yeah. Because when you have a child with a disability it might, when she was born, my initial, immediate reaction was, what is wrong with me? Why did I Why did my body yeah, create this being has all these issues? And then it's always been back in my mind. Can I do it again? I've had a miscarriage. So then it's again, another thing of like, Oh, crap, it's me. It's me. So I do. Yeah, I need to prove to myself that I can have a healthy, typical child. And I feel like it would be kind of really relaxing to my mental health to just like, calm me down and think actually, no, you are fine. It's fine. It was just a thing that happened. So I totally understand what that what you were saying was that, it's crazy. . .

Jess Honeyball  31:12

yeah - It doesn't feel good to say. But yeah, to sort of think I can have a non disabled child and have that experience. And I think everybody feels that way who's gone through something similar, so you're not speaking,  like it's not new to our ears. I think we all feel that way. hmm, I don't know that it's been amazing for Freddie, I have to say, having another child. I mean, hopefully it will do in later life. But he, I do feel quite bad, because it all happened in such a short space of time.

Lauren Fenton  32:31

So just to clarify on that. So you had you had three boys under three? Yeah.

Jess Honeyball  32:36

Yeah

Rina Teslica  32:36

Oh my god - Can we give you a medal? Twins. Oh God.

Jess Honeyball  32:42

So I do feel like and whilst we were trying for Leo but we genuinely didn't think thought we'd do it naturally. And I do feel a bit guilty about the fact there's only two of us. And there's three of them and not really being able to give them as much as I'd like in terms of one on one time, and that Freddie's disabled and we, you know, we had this operation in Leeds this muscle transfer, and I was up there for a few days with him. And not with you know, Leo was only just one at that point, no 18 months. So there is a bit of me that in an ideal world I wouldn't have planned it this way,

Lauren Fenton  33:20

That's mum guilt though.

Jess Honeyball  33:21

Yeah, constantly. Yeah we all carry that mum guilt, please don't like find other ways of piling guilt onto yourself. It just my mother in law has a saying, which I'm sure she wouldn't mind me sharing that 'don't feel guilt. It's just a waste of energy'. Just don't feel it and try and just abandon it. We all feel it. And there's three of them and two of us, but then think about how many relationships you've created. Okay, if you have one child, that's a relationship - this is my maths bit. Between you and that child and your partner and that child. You have two children. There's an extra relationship. There's only one extra relationship but you have three children you created more than one extra relationship - that's amazing. Yeah, I mean, Freddie hates Leo (laughter). . . at the moment . .

Rina Teslica  34:11

he wouldn't mind you saying this?

Jess Honeyball  34:13

Not sure about that relationship.

Lauren Fenton  34:22

What about you Gemma - that decision to have a child?

Gemma Sherlock  34:25

I definitely don't think there was any part of me that wanted to do like having the baby bit again or like having a normal baby bit because I was just absolutely terrified. The pregnancy with Jasper was really great. Like it was I loved being pregnant, I loved to just mooching around and being pregnant and but the birth was really traumatic and then obviously afterwards was just you know, brutal. And so I didn't I think I was just terrified. To have of anything happen again, or even just going near a hospital again, because we're just in and out of hospital. So I think the decision was really more about Jasper having a sibling because I have a sister, our mum passed away. So our relationship is, you know, is crucial. I think I wouldn't feel anchored unless I had her. In my life, obviously, I've got amazing friends, but and our relationship hasn't always been straightforward. Like we we used to argue we're very different in many ways, but that fact that she is my sister will never go away will never change. And I think I really wanted that for Jasper. But I also was terrified that what how was he going to manage it, because his seizures at moment are quite good. Touchwood. But, you know, he, at that point in time, damn I shouldn't have said that, at that point in time, it was it was awful. Like we're in and out hospital, you know, we have two monitors all through the night, and he's having seizures in the night that you can't really see. So sleep is fraught, because if you drop to sleep, and he may have a seizure, you you haven't noticed, and he needs to get his medication quite quickly, otherwise, they didn't stop. So I wasn't sure how we were going to manage it. But I just felt like it's something we had to do. And I think Ro felt the same way at the same time. And it was also a financial decision. We did have lots of frozen embryos. So that also is like blows my mind that Spike my youngest and Jasper, honestly made, essentially because they were harvested and fertilised at the same time. And then they were in the freezer. So spike was just sitting in the freezer waiting to hear this. Yeah, so they're actually in a cellular level the same age - twins - which Yeah, yeah. But then we decided to go for it. And I think we said let's just try a couple of rounds. And I think we were both really of the mind that because it is brutal going through IVF. Like it's It's hardcore. It's, you know, they make you go through, essentially, the menopause. And then you're like pump drugs, and you're injecting every day. And it takes a long time, and you're spending money all the time they're trying to make you have the drugs. So we said, look, let's just see what happens in one or two rounds. And if it doesn't, then c'est la vie. We've got this amazing child and it didn't happen the first time and then we were on it. So like we got to try again. Then we tried again. And we got pregnant with Spike. And I can't tell you like he he's just a wonderful addition to our family like he's he's absolutely he's just a bundle of frenetic physical energy totally different from Jasper who's sweet kind of mild and Spike is, he just came out roaring, he's alpha to the core, and coping with him was difficult when when Jasper was little because obviously I wanted to be there for Jasper, Jasper had all these you know, he still, he was walking but he was still very wobbly, couldn't do stairs he still needs help with all his clothes still to this day needs a lot of extra help. And then we were in and up hospital. So I think I probably didn't give Spike enough full-on you know, I didn't really have that time of like glorious motherhood that you think you're going to have because actually it was like, Jasper Jasper Jasper, Spike Spike Spike and and then I was like, am I giving enough to Spike oh my god, he knows that I'm not, I'm focusing on Jasper and Jasper was really needy and that was all rocky it was rocky it was difficult. I'm not gonna say it's easy. But that's like that is families anyway and Spike's so full on like he was walking at nine months and he was climbing and just like all beating and  pushing and shoving so loud.

Rina Teslica  38:45

So he's like the typical second child basically . . ?

Gemma Sherlock  38:48

Yeah - on steroids!  Jasper would cover his ears and say mummy he's so loud and I don't know what to do with this child. But as time has gone on, what a therapy for Jasper, because he, Jasper never really crawled he he wasn't strong enough and eventually learned to walk so he missed developmental parts which you know, the neurologically those pathways just didn't form.  But Spike did all that really quickly and Jasper would copy him to this day he copies him so he's gone back and done those things over again. And Spike will climb a tree, Jasper was like oh my god, no, I couldn't climb a tree and then he's doing it. There's a Spike leads the way Jasper follows Jasper can't really initiate his own imaginative play, Spike does that naturally because that's what apparently that's what kids do, in a normal life. Who knew? And then well Jasper will join in and so now as they get was just moving into a phase where it's like, I can actually leave them for five minutes without it. You know, somebody's being thrown down the stairs Jasper being thrown down the stairs. It's it's definitely Spike, and they're playing together and they have their own dynamic which is sometimes feisty and sometimes upsetting. But mostly love. Aww so glad we did it you know. It's made our family. It's been really hard it's been really exhausting, but we feel like it's made our family stronger and richer. Yeah, yeah. So I would say do it, and about the fear of that first bit like, that's real, that's not gonna go like, I just had to take ownership of it. And I said, I'm having a caesarean. Nobody's gonna f**king stop me. I'm going on the NHS, I'm gonna have a caesarean. I need to take control of this. And they were like 'why' and I was, 'no, no, no, no, no, you're gonna give me a caesarean. And I want it'. I don't want to go at the same hospital. So I went down to like, what's it called Chelsea and Westminster which is very very nice, and I didn't want to be in the hospital that he was born in or all the hospitals that were in and out of all the time. So . .

Jess Honeyball  40:46

So you new your triggers - you were very strong about that. Yes determined . . very impressive.

Gemma Sherlock  40:50

Yes determined to do it differently.  Yes and on the day he was born, I was like, just a wreck like shaking could physically couldn't stop shaking. And I was just 'get him out. I don't want to know anything. I don't you could have just put me to sleep for three days. I didn't want to know any I don't want any of the birth thing or Hypno birthing or anything. I was like, get this baby out of me safely. And then I want to wake up in my own bed with a child that is healthy. And yeah, so I couldn't get out of there fast enough. And then I found myself in bed with the health visitor being like 'you alright love?' Me being - 'Gosh oh gosh this is so dreamy".

Rina Teslica  41:20

So so crazy, because I have the thing in my head. So Lua was born at St. Thomas's. And it's a lovely hospital. And like the birthing suites where you give birth, the windows are massive. I'll never forget and like you see parliament and Big Ben and it's beautiful and Lambeth, bridge, love, love, love. But like having given birth, and then like my dad and my mum came and gave like flowers because you know, you've just given birth even though the baby's f**king in ICU. But what Yeah, so I have this picture of like red roses, and the view of just like London, and it's beautiful. And I have a thing in my mind where I'm like, I want to go back there and redo it. Because it, it was wonderful. Otherwise, I want to do it the same way but just have a different outcome. That's like kind of thing my head and we spoke about it this morning, because I had a dream last night about hospitals. And I was like, you know, 'Arbs like, I think I want to if when we do have another baby eventually, I think I want to go back to St. Thomas's'. And he's like, 'F**k, no. No way. Am I walking through there' - Yeah, like even because we spent like several months then there was an AMT coffee shop, that we had lunch all the time. Every time every time I see an AMT, like randomly like there's one in Richmond underground station, I will take a picture. And I'm like, Look AMT, you'd like? and he's like f**k off? Don't show me it. I don't want to know I don't want to see it. I don't want to like just anything to do it a f**king massive trauma. So we're in like that mind. And I was like, Where would you give birth? He's I don't know, UCL or any other hospital just not that one. So we're in two minds.

Lauren Fenton  42:59

Well, if it happens when it happens? You're the one giving birth, so I think you get to veto that decision.

Rina Teslica  43:05

Exactly! But another thing I wanted to get into is, for example, like Lua will always need help, and she's never gonna leave my side. And selfishly, I want to give her a sibling that will be there when I'm not. Have you guys thought about this?

Gemma Sherlock  43:21

100%? Yeah, that's I think that was like the biggest shock for us when Jasper was doing so well. When he was little we couldn't believe I where he'd come from the moment he was born. They said his head, it's just black. We scanned him, it's just black. I was like this what does that mean, is he going to survive? And they're like, I'm sorry, I don't know. Like he'll He'll either make it the next five minutes, or he'll walk out of here in a year's time. And we were like, and he was doing so well. And then we went to see his neurosurgeon who I mean, the neurosurgeon is incredible, kudos to him, but they're not known for their bedside manners. And he was pushing for him to have epilepsy surgery where they disconnect half the brain. And it would mean he would definitely be wheelchair bound. And various other you know, there were there could be many risks, but they said potentially he would have like 50% chance of less seizures, which to me does sound a bit bonkers but that's by the by, by that point, he was like, You do realise that this kind of epilepsy, he's not going to be able to live an independent life. And you're, you know, we're potentially giving him the opportunity to do so it just hit me like a tonne of bricks because he was doing so well because he looked so great. It started to think yeah, how do you live independently if you can't be alone because you're having seizures.  Equally, that might change that? You don't know, but that got me thinking about all those things and it gives me the fear in the shower. You know, it's the fear and the nighttime like, what happens if something happens to me what happens? Can my sister look after them and I think I put a little bit of pressure on Jim and Georgia when they were little because they have such a great bond as siblings and equally is he's not their responsibility at all. And it's complex having a you know, a newborn baby from your dad with his new wife and you know, that's complex for them. I know that but I put a little bit of pressure on them like 'you love him as a brother', and they were like 'shit man - calm down a bit'  I Yeah, it was like who, who's here for him who's here him, and still now to Spike and like, he's your brother. He's gonna be your brother forever. I read them books about it. And I do feel that like, not, you know, Spike may not be able to look after him it's such a pressure, but at least it's another bond. It's another tie, it's another connection. So yeah.

Rina Teslica  45:44

I'm not alone. And it's great. It's a crazy, crazy way to think about it. And it's sometimes it feels so selfish. Like, I want another baby to be around when I'm dead. Like, it's so f**ked, but I feel like she needs she's also at that stage where like, children are so amazing to her. Like, she'll stop in the middle the street and like chase after kids, and they're a bit like 'what the hell is this? You know? What, and she's just obsessed. And I can sense now, which is why we're doing this podcast, that she's lonely. And she she needs to have that. Yeah. She's very sociable, very so engaging. Yeah, and like, adores children. So it's like, I now need to like suck it up, basically, and make that decision and give her something that will be so beneficial for her. So you've you've got you guys have all prompted me.

Gemma Sherlock  46:36

the fear is that, you know, it doesn't go to plan, anything can happen. Like it may not be anything like this happened to Lua it, you just you just don't know. It's gonna be a leap of faith, isn't it, you go into it with an open heart and hope that the outcome is what you want it to be.

Jess Honeyball  46:53

And possibly the pregnancy won't be the worry free time you have first time that you both said you have that lovely walking around. Yes, you're loving being pregnant, because you might have all those anxieties. I certainly did in terms of the digit scan and blah, blah, blah, but but there's every chance that then that newborn baby bit is just very different.

Gemma Sherlock  47:16

. . and also Lua's now that bit a little bit older. So you really are like on top of managing, well now she can manage her own trachy, now she just pulls that out, puts it back in, she can take care of herself. But she you're at she's at a point where you're a little bit more like in control of, of what you know about her? Oh, yeah, he's when they're really little. It's still like, what is this?

Rina Teslica  47:44

Oh my God yeah - for the first three years, You're like, what is this person? Like? How am I going to deal with you for the rest of your life?

Gemma Sherlock  47:51

Yeah well I think that's the same with a normal normal one, those you know, non disabled, non disabled. You know, as a mother, you get sent home with a living being and you have no idea what you're doing. So for us, it's just like, triple fold for you, like, even more so because there's so many things coming in. Yeah.

Rina Teslica  48:00

And it's nuts because she was in hospital for seven months. So really, like, I had the help like the nurses were doing everything I could just sit back and like Let them wash her. Let them change her nappy feed her do all the bits. Oh, I didn't really do

Gemma Sherlock  48:23

Oh really I did that - oh maybe that was once he was out of ICU.

Rina Teslica  48:25

Oh, no, I was quite, like with the trachy. So I was like, very frightened and a bit like, Oh my God. And then when we did get home when she was like, seven, eight months, I was just in total like shock because partners gone away. You're left at home alone with this child who is like attached to bits and whatever. And it is now fully your responsibility. I was like, Oh my God. I had carers in the night as well which I still do but like so I didn't have like the newborn baby staying up all night doing that three hourly feed nothing so I'm also petrified of how that's gonna be. Once I do - tough Yeah. And it's like Am I ready? (LF: You'll Love it) you think?

Gemma Sherlock  49:13

When I said I was like delirious with happiness, because like at the point where most people are like really stressed I always thought that it'll be fine. I'll Find a way

Lauren Fenton  49:23

I think I want to have a third. I mean, that whole thing you were talking about - you know Spike being there for Jasper we've talked about having a third and one of the things that comes into our decision rightly or wrongly and somewhat unfairly I think is: it's a lot on Olivia you know, she's already even though she's eight and Bea is six it feels like a lot larger age difference and she really does look after Bea and help her and she knows more about physio, OT & speech therapy than most adults.

Gemma Sherlock  49:58

She always knows what Bea is saying even when Bea was really little she would know what she was saying.

Lauren Fenton  50:03

Yeah they could communicate and even though Bea can't really communicate. Olivia understands and interprets for her which is sometimes been not so good because it's not encouraging Bea to try and find the articulation. But yeah, that is amazing. But yeah, sort of thing that is a lot on Olivia for the rest of her life. Absolutely. Like you're in the shower. I'm absolutely terrified I won't be there. It's like maybe we should make another human to help.

Gemma Sherlock  50:31

I have that with us too because Spike and Jasper share a room. So since he was little, he's, you know, being woken up in the night to find I'm calling an ambulance. And I'm like all on Jasper, Jasper is having a seizure and and we're like all Jasper and he's in the middle of this like trauma and the ambulance people come into the room and the lights are on and then they take us away. And he's had that over and over again. Since he's (been little) right. He doesn't know any different. So for him that's normal.

Lauren Fenton  50:57

On that how do you talk to Spike about Jasper? And similarly, Jess, do you talk to Freddie's siblings about having a sibling with a disability?

Gemma Sherlock  51:09

Well, Jasper seizures are so subtle that I am constantly asking him 'Are you okay? Are you having seizure?' And so that is just a language that is around Spike from day dot.  So he will ask Jasper 'are you okay? Are you having a seizure?' Even though Yeah, and now they're getting a little bit older and Jasper's seizures are (god I keep saying things (poss jinx)) been quite good for a few weeks. His independence is growing a little bit. So for example, they'll play upstairs on their own, I might go downstairs which I would never have done before. And I know that Spike is with him. . .

Rina Teslica  51:43

So he already has the responsibility? . . Love it always looking at the positives!!

Gemma Sherlock  51:45

He already has it, which maybe isn't fair, but c'est la vie. So Spike says to him, 'are you okay? Jasper' - and Jasper is meant to say to him I'm having a seizure and Spike's meant to come and run and tell me which I think he would and he has been in a scenario where we're driving to Cornwall and in the back of the car Jasper has had a long seizure we've had to pull over on the motorway and the police have come the ambulance have come and we're trying to deal with that seizure and Spike is just sat in his seat like an absolute sweetheart and this is a child who cannot sit still. He understands the gravity and the seriousness of it. And that's you know, that's that's okay, that's all right. And so we talk about it all the time. He doesn't really, Jasper doesn't really have a scooby do what epilepsy is or what it means but occasionally he'll ask me a question - he asked me the other day 'what is cerebral palsy?' and then we had a really nice conversation about it and then the end he was like 'So does that mean 'I can go in a mini bus?' (laughing)  I hadn't got a clue what he was talking about, then he was like - "On Mr tumble - the kid in a wheelchair goes on a mini bus I'd really like to do that". I was like oh okay, so you've got no interest in cerebral palsy 'we could go on a mini bus not just becuase of cerebral palsy'

Lauren Fenton  52:58

Just love that with children . .

Gemma Sherlock  53:02

Yeah - All our worry about 'oh god are we f**king them up – f**king them up? course we're f**king them up - that's our job as parents!

Jess Honeyball  53:09

Yes - just rent a mini bus. Yes we could put them all in a mini bus I like that.  So what about you Jess? So when when the twins were learning to walk, Dylan started walking at about 11-12 months and then Freddie didn't walk until about 16-17 months. And he, I mean as well as every attempt being accompanied by this like raucous laugher, he's got this real like Sir James chuckle - hilarious - so that we'd be at soft play and people were like 'you've got to get this kid on YouTube'. It's really - ha ha ha - hilarious, really filthy. So but you know, he was pretty wobbly. And he I mean at one point I think we're in a&e three times in a week with - because he would just - if there was one sharp corner in a room he would find it with his head and you know get a major egg because particularly, you know, if he fell to the right side he couldn't break his fall, or and I think in some way he wanted to avoid putting weight on his right arm because he doesn't have the flex in his elbow. So I think that would damage his arm. So now he's kind of learned to tumble in the right way. But I never forget the first time you know, he was sort of cruising around the car as I was getting Dylan in and it was a real kind of mum fail, I should have had him bah - I don't know, somewhere else, in the buggy or whatever. And he kind of went round and went off the curb and just went 'clunk' and I just howled and yelled like because I just saw this enormous like bubbly, uh you know - yeah, like egg you know bowl of eggs and it was just horrendous. And by the end it happens so much, you know, I just kind of knew what the right things to look for where and I don't think we need to go to A&E, I mean generally if it pops out it's a good thing. And if they scream, then they stop. You know, they react. Anyway. So that happened for so long. Like on and off the first three years, it was so difficult and I, the stuff I'm anticipating being difficult is the psychological, the kind of realisation that he's very different, which is sort of happening now, especially with the surgery, but particularly at seven when there's that sort of consciousness about how you appear to your peers, and how you are different. And so that's sort of what I was anticipating being difficult. But all this early stuff was like, not what I was expecting at all. It wasn't expecting the physical, the hurt and the injury. So I was worried that that sort of the impact on Dylan, because I had a terrible reaction, I sort of, can't, I need to contain it better, and probably do now. But early on, I just be like, oh, you know, appalled because it looked so bad. And I was so worried that I was loading that onto Dylan. And in a way he was quite risk averse for the beginning of life in playgrounds and stuff. And I'm sure that's because he saw Freddie just tumble and give himself black eyes and noses and faces. So we, we've talked about that a bit. We talked about his muscle surgery that had muscle transfer surgery that happened four months ago. And Freddie calls his smaller arm he calls it his baby arm, which is just, you know. Leo has started saying 'my baby arm my baby arm'. We're like, Leo, you didn't have a baby arm. You've got two arms. He's like no, no baby arm and quite a lot of Freddie's friends say they have a baby arm as well. So we Yeah,

Lauren Fenton  56:48

I think that's a really interesting actually, um, who knows, you're probably more of a psychologist than me and understanding things. But that feels like actually, there's something in Freddie that people want to emulate . .

Rina Teslica  57:00

. . it's a positive thing . .

Lauren Fenton  57:02

that they see him saying something they want to see it say it and habit to that. I think that's, that's really interesting.

Jess Honeyball  57:08

Yeah. Well, particularly at this age, I think, I think I think that'll probably change. But so we talked to Freddie very much about his story. He's a bit reticent to talk about it, actually.

Gemma Sherlock  57:19

hmm So's Jasper . . won't have anything to do with it

Lauren Fenton  57:23

. . they're so little,

Jess Honeyball  57:24

but it's interesting at this age of kind of consciousness about their bodies, and that there is a reticence.

Gemma Sherlock  57:29

But they're both very sunny, positive people.  I don't know if this is at play, but I from my instinct is Jasper is just like, I don't want to talk about that it's negative. That's it he doesn't want it. If he goes into hospital, on his birthday once, he had to go in by ambulance in the middle of his birthday party. And then the next day at school, everyone was like, how was your birthday? And he's like, yeah, it was great. That's it.

Lauren Fenton  57:33

I think that's very typical of a child, actually. Because they don't want that difference. And they don't want it. I mean, I found that even with Olivia, sometimes she would be overly positive and optimistic. I mean, she's a little older. Now. She's like eight, Yeah, she's just took Bea as being Bea. But certainly in the last couple of years, and particularly in the last year, we have had so many conversations about why it is that Bea has this or why, even to the point of talking about genes and stuff.

Gemma Sherlock  58:12

And has she instigated those conversations?

Lauren Fenton  58:25

Well, partly because we've been reading quite a lot of books. And it's been sometimes instigated by her because she has to, she's surrounded by eight and nine year olds, and they have questions and they have a certain level of maturity where they talk about these things. So she needs explanations for her friends at school or when they come over to our house. But then also we've been reading books and looking at lots of things like together that I think have prompted her to ask questions like this Sinead Burke book, we were talking about this earlier before we were recording. Brilliant book - Sinead Burke - it's wonderful. It's all, it's a children's book about being different and being you and it's just lots of life affirming tips and support for for anybody regardless of who they are. People who don't know Sinead Burke so, little person and the advocate for disability rights and she's also been a teacher and she has an amazing TED talk that's worth listening to but she she just puts things so eloquently about why people noticing differences is okay and how actually we should talk about it but the you just need to be you and if people have a problem with that, that's their problem. And yeah, Olivia loves that book and it's prompted her to be very, and I always remember she was, I think in year two, she had to do a project at school where they were designing, designing like a city or something. And she very proudly told me when she came home that she had, how she designed it. And then that she'd made sure that there was a lot of disabled parking in the car park to design the whole car park. And of course no other Seven year old or six year old had thought about that . . .

Gemma Sherlock  1:00:14

. . . it would never come into their consciousness, would it? of course while you're driving around trying to find somewhere to park

Lauren Fenton  1:00:18

. . so yeah, I think she can educate them and talk about these things with her friends at school and class, yes, that's fantastic.

Jess Honeyball  1:00:27

And do you think you'd have she would have been ready to talk about difference any earlier than now? Because I think there's there is an age,

Lauren Fenton  1:00:35

I think it's been, we've always been really honest about Bea has all these extra challenges. And you know, it's been kind of obvious because Bea's been in hospital for surgeries. And when she was little, Olivia would say things like, 'Why can't Bea go to my school? or Bea can't talk yet but she will talk?' and I would just be like, 'well, you know, she'll, she'll Bea will do what's right for Bea in Bea time', you know, trying to not give her kind of this expectation that Bea was going to do something but just a little bit later. And then now, yeah, she's now she's ready for a fuller conversation. And I think to your point about the minibus, so it was a bit like that with Olivia, like, you would try and say, oh, okay, let me tell you about Bea and the fact that she has this challenge. And then she just be like, no, like, what I just want to know what colour glasses she's gonna get next, you know, something trivial. But that's how kids think.

Gemma Sherlock  1:01:36

I find with Spike, he will say something like, 'I'm wobbly too Mummy', or 'I've had a seizure'. Because he's desperate. You know, there's so much attention going on with the other child or he'll like push Jasper out of the way, and I'm like, 'you can't do that'. Just try and remember he's wobbly and then he'll come out later on like 'mummy I'm feeling a bit wobbly, I've just had a seizure'.

Jess Honeyball  1:01:59

Hmm Yeah Dylan, he'll sort of put his hand in his sleeve and say, Mummy, look, I don't have a hand either. There was quite a lot of that, at like three. Because, he didn't get so much more attention Freddie, but just by the nature of it . .

Gemma Sherlock  1:02:16

. .  maybe help dressing and things like that.

Jess Honeyball  1:02:18

Oh my god, I love that thought - how amazing. Yeah, we offer different prosthetics and he never wants to use them. But yeah, it's a little bit more attention on Freddie, I guess. But we haven't really had - we talked to them both really - about how he - about Freddie's story and how he just how he grew inside me and his arm just didn't grow and that's how he was made inside my tummy but every now and again. Dylan will ask things like 'are his fingers inside his arm?' Yeah I wonder if it comes because they've just started school. Yeah, and other kids are asking them kind of what you're saying about Olivia to about sort of explanations for their friends. And I think it's a bit there's a bit of it, that comes down to that

Gemma Sherlock  1:03:03

Starting to see something, see his brother through other people's eyes rather than . .

Jess Honeyball  1:03:08

. . Has it always just been, just the way it is. Yeah.

Rina Teslica  1:03:11

This leads quite nicely into like, how you parent between them. So obviously like how your parent Spike and how that changes and how that kind of goes around with Jasper's disability and whether one will get away with more or less. Because I was thinking about this with my parents, obviously, their parenting style was the same between my brother and I. But our personalities are different. So like I was the big rebel, even though their parenting was the same, the way that we reacted to both the parenting style it was just different. He was a lot more docile while I would rebel massively and . .

Jess Honeyball  1:03:46

Where you the younger?

Rina Teslica  1:03:47

I'm the older. yeah. Which is crazy. Right? And it's interesting that when you put a disability in the mix, and then how that will change how you parent siblings, so yeah, - Gemma, What do you think?

Gemma Sherlock  1:04:03

I don't know.

Lauren Fenton  1:04:08

I think it's a real challenge for all parents anyway because all children are different and they will need different things at different times. And you try and be fair and you try and be consistent. But depending on your mood depending on the circumstances you can find yourself not being there.

Gemma Sherlock  1:04:24

. . and there's just so much like guilt because already Jasper takes so much more has, you know, since he was little and then he's really really placid and will do what you tell him to do and will sit at the table and eat because that's part of his condition partly because he's really medicated partly just his personality like your brother. And spike is the total opposite although obviously he's just a kid like that's all normal stuff but so he's always got the like, the harder side of me. And I had I kind of made a conscious decision. And actually Jess and I talked about this because we were both struggling with like, our two most rebellious children, which was Spike and Dylan. And I just had to say to myself, like, he is just a tiny human being, like, he's not doing any of this. He doesn't know anything he's doing nothing is he's doing it intentionally. And I was finding myself getting really cross and angry and like irritated in the moment, he was taking the brunt of that. And I just had to kind of tell myself, like, every time you feel that way, just remind yourself that he's just a tiny little human being and come to him with kindness. So when he was being mental, I'd be like, come to him with kindness . . .come to him with kindness.

Jess Honeyball  1:05:46

Repeat that mantra! It's a tiny person, it's a tiny person . .

Gemma Sherlock  1:05:50

It's been reciprocal. So the more that I meet him at his level and come to me with kindness and like, try to narrate what's happening rather than just like shout and shit all over them. I can see that this is typical. Gentle parenting, even though it doesn't quite often just snap into like, That's IT!! and Jasper said to me, other day like 'mummy, I tell you all the time, I love you because I'm so frightened you're gonna get angry' and I'm like 'oh no - but I'm not angry, am I angry, but I thought you love me, you tell me you love me all the time?' Because of what?? What did you say!!??' it was suddenly aware that like, he's, he's the one that's constantly, like who it's just Spike, it's okay, it's okay. It's okay. Yeah placating because I'm like, Oh, God, I can't deal with this, why have you thrown that down the stairs today? Or whatever it is, you know? So yeah, I have to consciously make an effort to parent differently than my natural instinct would be. Yeah.

Jess Honeyball  1:06:55

It tends to be the same. I have to say maybe. Although, you know that bit in the Crown, where the Queen and Phillip say 'who's your favourite? Who's your favourite?' So at the beginning, I was like, you know Dan and I would be like, "who's your favourite?!" Appalling I know. He's like "I think Dylan and I are similar", and I was like, 'yeah, you are and yeah . .  and probably Freddie's my favourite'. I mean, like, with a pinch of salt, as parents only joking, but obviously not. And Freddie was just, he just loved the joy in life, but was obviously a little bit more vulnerable. So if Dylan was, you know, quite often Freddie, doesn't want to roll his sleeves back. So we'll just be hanging. Dylan still now really irritates me he pulls him by the sleeve and kind of kind of pull him around. He's less stable. But you know, he's got good stability. And he's got an amazing core, because it all comes from here. So he's just got this muscular centre. But you know, he's obviously going to wobble. And so I come down quite hard on Dylan for things like that, that are kind of specific. But generally, I think I'm pretty much the same. But I wonder if with a physical disability, it is a bit different. Because the cognitive needs are the same really . .

Rina Teslica  1:08:38

so they understand the barriers

Jess Honeyball  1:08:40

Yeah - so actually, that remains kind of similar. And the same with Leo.

Lauren Fenton  1:08:45

I think that's yeah, that's the challenge. I think with Bea, well, twofold, I guess it's communication and kind of related to that behaviour. So when Bea doesn't understand something, or won't do something, or has a complete f**king meltdown, you know, when we need to get out of the house or something like that. Sometimes Olivia finds that hard. But of course, we all find that hard, but I don't react with anger and disciplining Bea in the same way that if Olivia had had a hissy fit about something I would, because she's reacting like that and behaving like that for a different reason. And maybe fundamentally, it's the same reason but I can actually talk it through with Olivia and rationalise it in a way that I can't at times with Bea. So she's very accommodating with that, and I'm very aware of it, but it's it is hard. And it's hard to distinguish between when it is something where Bea's crossed a red line, and she knows she's crossing a red line and she's literally just misbehaving and acting up in a way that is I need to clamp down on and we need to put her from green to amber to red on the chart or whatever - versus something where it's a genuine frustration that she can't communicate a need or want to or something. So, I find that balance really hard to strike at times. And I know that I don't always get it right. But I also, I'm quite honest with Olivia about that now I can be I can sort of, she'll say, 'Hey, Bea pushed me and you know, you didn't you didn't shout at Bea being, you shouted at me. You shouted at me for that before and you didn't shout a Bea'. She calls me out on it when I do it, which is good and bad. You know, we have a lot of conversations around. Actually, you're right, that doesn't seem fair. I can see why you'd be frustrated by that. Let me explain to you why I did that in that moment. And you know what, okay, I don't always come to it with such clarity and good explanation. Sometimes it is. 'You're right, sorry. Bea don't do that again, you know, whatever, whatever it might be. So it's really hard. And I just don't want her to ever feel resentment. But she will she will feel resentment in moments and she probably feels resentment in moments now. It's, it's, it's really tricky balance to tread.

Gemma Sherlock  1:11:03

. . and Spike's, really, he's, he's quite sort of like emotionally switched on. And he is now saying to me things like, I'm hurting too, or you didn't ask me or like, I'll say 'Jasper you okay, Jasper you okay?' and Spike's like 'I'm okay' Spikey. So now I'm consciously making an effort in the morning when they're putting their shoes on normally, like, get your shoes on Spike, and Jasper you know the processing of like, let alone physically doing it with one left hand that doesn't really do anything. And then physically trying to work out how to do that for him - it just takes a very long time. So I've learned so much patience with him, like we give all the time that he needs and Spike gets there's nothing. So now that Spike is able to sometimes put me back, you know, remind me I'm trying to be trying to give it the same amount of time because God How does that feel as a kid when the other one is getting so much calmness? And then he's getting my crazy mother, it is difficult.

Lauren Fenton  1:11:59

Do you think that Spike has more empathy because of his relationship? I mean, it's really impossible to say, isn't it?

Gemma Sherlock  1:12:04

I didn't, but obviously, what I see at home is them butting heads, but I just got a report from his nursery. And it was just, it was just so sweet. 'And spike is the sweetest child. He's so kind. He's so he's got so many friends. He's so empathetic, he looks after all the kids in the class, he always asks is everyone okay?' . . .

Rina Teslica  1:12:22

Wonder where he got that from? . .

Gemma Sherlock  1:12:26

Yes and he's really . . and this little girl came up to me and said 'it was Spikey who looked after me when I was crying' - She probably had a Teddy - so yes, he does that - I don't always see that. But yeah, he does.

Lauren Fenton  1:12:37

That's wonderful. So now we've reached that time in the podcast that we want to ask you guys for #awkward. And that was awkward in itself.

Rina Teslica  1:12:59

I mean it is #awkward we got to make it a bit awkward.

Lauren Fenton  1:13:01

so just to remind what that is. We ask all our guests and we also share some ourselves for our #awkward moment. Basically, it's that unsolicited but often well meaning advice that you get or comment that you get from either a friend or family member or stranger in the street. Lovely stranger that comes up to you in the street. So Jess, have you got #awkward that you'd like to share with us?

Jess Honeyball  1:13:29

Yeah, God - how did you bite your tongue? Did you literally Bite your tongue? Yes. Unfortunately, a family member when the twins were first born, well, they were probably about four or five months old. And we took them to my husband's grandfather, who was 99 at the time. So he did meet them, which was lovely, but he did study Freddie for some time, disapprovingly. And it's like, oh, and looked at Dylan his twin and 'Oh but that one, this one's perfect' and sort of put Freddie down and which was really difficult. Yeah, no, really did, eyes watering . .

Gemma Sherlock  1:14:21

Did you have to forgive him because of his age?

Jess Honeyball  1:14:24

Well, pah - and you know, and I spoke to Dan's mom about it. And, you know, it is a generational thing. Sure. And we're lucky that actually, in terms of disabled disability being visible, it's it's we're probably a generation that has been exposed to it even though we're saying not enough. Yeah. But more so than them more so than them. And so I think as you say you can forgive the ignorance, you can understand it, but it's pretty hard to hear somebody else say that your baby's not perfect. Yeah, yeah.

Lauren Fenton  1:14:59

Oh, Gemma, anything you want to share? I feel like this is a confessional. It's other people's confessions. Really isn't it?

Gemma Sherlock  1:15:09

I think. I think because Jasper's disability is not particularly obvious. We haven't had that many scenarios I used to find it really grating at the swings for some reason, like passive aggressive mothers. Quite frequently it's happened more than once we've had it who tell their own children like how that boy's too big for that swing, because it's the baby swing. And when Jasper was just having the time of his life like in the baby swing - because he was he's wobbly on one side like he is he's it affects his whole left side. So sitting on a big boys swing and holding on with two hands he's just mastered and he's over the moon. But he loves to go in the swings now wonderful for me that I can actually plunk him in there and swing him but then you'd get some others making a comment about it and I just thought, Who does that benefit and what are they even getting out of that. Other than, are they, it must come from a place of competition essentially, like my kid by that age is going to be able to use a big swing . .

Jess Honeyball  1:16:11

And they're not just speaking to you. It's like a way of you hearing but sort of really . .

Rina Teslica  1:16:16

. . .so passive aggressive, aggressive.

Lauren Fenton  1:16:19

And what about the children, their children that are hearing that? . .

Gemma Sherlock  1:16:22

. . then they start commenting 'he's really big to be in the swing!' Because you've just said it. I mean, it's bizarre. And I tried to let it go over your my head, but you know, it does seem awful. But that's it.

Lauren Fenton  1:16:33

Yeah. I mean, I guess with Bea she's really young looking. So she wouldn't get that sort of comment. But she'd been getting babied a lot. So and she still does. We went to a Halloween party this year. And she was uh, one of the parents that I didn't know I think she was a bit weird to be honest. And she was just all over Bea like couchee couchee coo, kind of cheeks and all this kind of stuff. And she I know she meant it well, but she was like, she wants to give me a kiss and cuddle her and was like treating her like a sort of six month old. - infant child - Yeah, completely. And she gets in the playground as well. I know she does all the year six girls know her because they want to come and baby her.  And that's hard to stomach sometimes. But it's just what can you do other than teach her to not like to stand up for yourself and be like I'm here I'm Bea How old are you Bea? 'iX - she'll say, and just Yeah, I think it's people's perceptions is a real hard one.  I know you get that with Lua sometimes as well. Don't you cause she's so . . . . . she's little as well. I've had a funny one in a playground. Actually. I just remembered like Lua's tiny like she's six nearly but she looks maybe two ish. So I was on like, I don't know if it was the swing it was awhile ago. And anyway, she was on some sort of apparatus in a playground. And this little girl, little she was maybe 10 ran over and was like, 'why is your baby so fat?'

Gemma Sherlock  1:18:15

My god, where does that come from?

Rina Teslica  1:18:18

I know . . her parents were like, the guy was like dressed in a suit and the mother very well dressed and like in Primrose Hills. And they must have immediately knew like, oh, shit, our daughter's gonna do something they ran up to like, 'what did she ask? - I'm so sorry.' And I was like, no, no, she was just asking why my baby's fat. Because they worried - well Lua is obviously disabled. Like she, you know, she looks different to other children. So I think they assumed that their daughter had said something horrible. And were very embarrassed. I was like, 'no, no, it's just why she's fat'. And then I turned to the girl and said 'She's fat because she eats a lot. And she likes all the yummy food, which I'm sure you do, too'. She's like, 'Yeah', and then like ran off, and her parents were just mortified. mortified. Yeah. So that's . .

Gemma Sherlock  1:19:04

how did you feel? Did you feel . .

Rina Teslica  1:19:06

I burst out laughing? I just thought it was hilarious. Like, of all the things that you could ask. It was that and it's just that naivity from a child, like, what's the thing that they noticed? chubbiness and double chins' . .

Jess Honeyball  1:19:18

. . name drop name drop . . I find that quite refreshing from kids because often, you know, it feels like people are noticing something and no one's saying it, whereas kids will just give you that face value response 'where's his hand? . Whereas, you know, you can see that some parents are just sort of desperately trying to scramble around in their head for something to say that's not related to their disability, because they don't want to offend and it's well meant, but it's f**king irritating. I just want to probably feel different now. But certainly when they were babies, I was like, why are you asking me? Why this is sort of a weird sick thing. But . . other than Geri Halliwell . . of course who just came straight out, it was at a baby group that we were at. You know when you see someone looking so glossy and gorgeous and you think 'I know you, like did I go to school with you sort of know someone and then I was like, oh my god, it's Geri Halliwell with her baby who was a similar age to Freddie and Dylan. And Geri and Freddie had a real connection during class, and she came up afterwards and was like 'where is his hand?' I said 'oh well that's just the way he was born. And in where I was, then I was like, Thank f**k, somebody's just come out and ask me rather than going, 'oh his smile's amazing. he's got gorgeous eyes'. Yeah. But she was lovely, really nice. And we had like a 10-15 minute chat at the end of the class where she was sharing stories. She'd just been on a yacht with this - The captain had one hand and he'd just was basically managing this incredible 20 foot yacht. That, you know, she was just very encouraging. And just said, you know, he's the biggest presence in this room about Freddie and how amazing - yeah it was just lovely, a nice encounter.

Gemma Sherlock  1:21:14

Like that's from somebody who obviously is used to talking to people in the public eye, but also you must, she must feel looked at. You know, people are doing the same thing to her especially with history. 'there's Geri Halliwell Don't look at her. Don't talk to her. Talk about her vibe. so how refreshing that she actually came to the point, and said what she wanted to say, Yeah,

Jess Honeyball  1:21:34

I'm disappointed you know she didn't give me her number . . so we could go on some sort of play date with Monty - still waiting. Was the first thing Dan said - did you get her number, if i'd started following her - be a bit creepy.

Lauren Fenton  1:21:54

So I think we've run out of time, unfortunately, today, thank you so much.

Jess Honeyball  1:21:59

Thanks for having us. It's been brilliant

Gemma Sherlock  1:22:01

Yes it's been so refreshing to talk about everything

Rina Teslica  1:22:04

Yeah,  And you've given me, definitely, food for thought. So thank you very much for that.

Gemma Sherlock  1:22:08

You'll have to let us know if and when it happens,

Rina Teslica  1:22:10

. . it will be because of you two . . Thanks guys

Jess Honeyball  1:22:19

. . pleasure anytime,

Rina Teslica  1:22:20

. . anyway we can chat now.  Done - woo hoo!

Lauren Fenton  1:22:38

Thank you so much for listening to the f**king normal podcast. We love making this podcast.

Rina Teslica  1:22:44

Yes, we do. ha ha . .

Lauren Fenton  1:22:46

We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.

Rina Teslica  1:22:59

So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at f**king normal podcast.com That's fkingnormalpodcast.com you can join us on Facebook and on Instagram at fking normal _podcast. That's fkingnormal_podcast. You can get all the links and more information in the show notes below.

Lauren Fenton  1:23:23

So thanks so much for listening all the way to the end. We'll see you next time.

~Music continues “wake me up, loud as clouds, all my love for you”