Epiosde 9; undiagnosed, unseen & unheard
~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 0:16
This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children. I'm Rina, and I'm Lauren. And we're both mothers to daughters with special needs.
Rina Teslica 0:29
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 0:40
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 the disabled child or adult. So expect bad language, and quite frankly, some brutal honesty. Because really, what the fuck is normal anyway?
Rina Teslica 1:14
Welcome to another episode of the fucking normal podcast. I'm your host, Rina.
Lauren Fenton 2:24
And I'm Lauren.
Rina Teslica 1:22
Most of us have special needs parents have been in rooms speaking to professionals and not had the answers we were hoping for. It's happened countless times we're short. But have you had a discussion where you've been told the concerns you have are the direct result of your actions as a parent? How do you listen to, let alone trust your instincts when everyone around you is telling you it's all in your head? It's incredulous to think but this seems to be particularly prevailing in the early years of a child's life. And most frequently as first time parents where there are no points of reference, and you tend to not have the confidence in what you're doing. Our guest today details her experience as a new mum at 24, who's gut instincts were telling her something wasn't right with her son. Yet those surrounding her weren't accepting of what she was seeing, and that maybe she was to blame for his delays. Our discussion today is all about the most difficult time in our journey as parents when our children are undiagnosed, we're unseen and our concerns are unheard. We also just want to flag that this episode does touch on suicide, which some of you may find triggering. And if that's not something, you're ready to listen to them, please skip this one and listen to one of our other episodes.
Lauren Fenton 2:26
Before we begin, I just wanted to acknowledge here that we're all coming to this conversation from a position of relative privilege. There are often factors such as race, ethnicity, disability, gender, etc. That can have an impact on how you are treated by institutions or professionals. We are coming to this discussion with our experience our reference point and fully acknowledge that we don't have some of these factors impacting on how people treat us.
Lauren Fenton 3:12
And I guest today is Jasmine Manley or Jazz to her friends and now to the fucking normal podcast. Jaz is 28 years old and lives in Cheshire with her partner Ryan and her five year old son Max. Max is suspected to have a rare as yet undiagnosed underlying genetic condition, the symptoms of which include hypermobility, low muscle tone, febrile convulsions, microcephaly, dyspraxia and global development delay. He also has an autism diagnosis. Jazz herself is autistic having been diagnosed at the age of 24, shortly after Max was born. She has her own blog, auttiemum and Max, where she has candidly and beautifully shared her experiences, as a parent of a child who has special needs. It's fair to say it has been a difficult journey. And as Rina has hinted part of this has been about not being believed. And the toll that that took on Jazz's mental health, leading her to a very dark place. We're so unbelievably grateful that jazz has agreed to share her story with the fucking normal listeners. I'm sure that you're all going to absolutely fall in love with her like Rina and I already have. Welcome to the podcast, Jazz.
Rina Teslica 4:32
Welcome, welcome, welcome.
Lauren Fenton 4:34
How are you today?
Jazz Manley 4:35
Yeah, good. I'm excited.
Lauren Fenton 4:37
Let's start with a bit of background. So tell us a bit about when you had Max and how were those How was the birth of those early days?
Jazz Manley 4:46
Okay, well, he wasn't a planned pregnancy. I never wanted kids just because I Oh, I didn't know I was autistic. But I was really anxious, a really anxious person. And children just never seemed to gel in my brain. I was like, Well, I know I'm not good with other humans. So I'm not going to be good with a little human. And so yeah, he was a massive surprise. And I had hyperemesis gravidarum. If that's how you say it when I was pregnant. Yeah. So that is it's like severe morning sickness. But it's the point where, like, I was vomiting over 20 times a day. It was like having a sickness bug, but for the whole pregnancy, so I couldn't keep anything down. I couldn't keep water down. So I was dehydrated. I kept going to hospital, because I didn't have the I couldn't stand up because I was so dehydrated. And they kept saying, try these anti sickness tablets. Try these anti sickness tablets. And it was awful. And I hated being pregnant. I hated every single thing about being pregnant. It was it was absolutely horrible.
But yeah, there was there wasn't any concerns in the pregnancy at all. They kept measuring the bump, and they said, Oh, it's a bit small. So we'll send you for growth scans. And the due date kept changing based on his size, but it was there was no like concerns or anything really during pregnancy. And I went to full term. And I started, this might be too much information, but I started to like lose fluid. And I thought I was just weeing myself. I didn't think anything of it. I said oh, you know? One of those things!
Lauren Fenton 6:46
We've all been there! I mean, some of us more than others.
Jazz Manley 6:50
Yeah, trampolines. I'm not allowed on trampolines any more.
Rina Teslica 6:54
Running for the bus, it's not happening.
Jazz Manley 6:59
Yeah, so I thought I'd just leave in fluid. And we went for a scan. Because I was I was only a couple of days overdue, but they were like, let's do a growth scan. And we'll see if he's okay. We didn't know the sex of Max either at the time. And they were like, Oh, he's, he doesn't look like he's got any fluid. And I was like, oh, yeah, well, I thought I'm just weeing myself. And they were like, Oh, see, you've been losing fluid. I was like, yeah. And then they were like, how long have you been losing fluid? As a few days? I didn't think anything of it. So they were like right yeah, we're booking you in tomorrow morning to be induced? Wow.
So that wasn't, that wasn't fun, because I thought, right, I'm gonna have a water birth, I'm gonna have it really relaxing, and I'm gonna have music and mood lighting. And it was a right you hooked up to a drip, we're gonna break your as we're gonna give you an epidural, because his heart rate kept dropping. And it had been a few hours and they said, Oh, you're not progressing at all. We'll break your water. So they broke my waters.
And the contractions started comeing. But then 12 hours later, the epidural had totally worn off. And he was still like, nowhere to be seen. So I'm panicking because I'm like, This is my first baby, his heart rate keeps dropping, I haven't got a clue what's going on. I was terrified. And the midwives were arguing in the room with me about whether I needed another epidural, or whether it would end up in an emergency section. And I'm just sat there thinking what the fuck is going on? Like, can you just get this thing out of me? Because I'm done. I'm so done. And, yeah, it was really hard. And I cried a lot. And I remember thinking, I can't I can't do this that just cut it out of me because I can't do this anymore. And they didn't.
And then it wasn't until 24 hours after my water broke and the contractions started. And they said, right, this is now when you need to push and I'm like, I've had contractions for 24 hours. They didn't give me another epidural. But, I couldn't have the gas and air because it made me pass out. So I couldn't have anything. I was in a lot of pain. And I was just really like traumatised and they said right you're gonna have to you're gonna have to push now because he said he's not coping, and I was like he's not coping. What the fuck. I'm not coping! I was really selfish. What do you mean? So yeah, they they sort of scared me into getting my act together and they're like, just get on with it now stop mard-arsing and so I was pushing and they weren't happy with his heart rate. So they said right on the next contraction, we're going to give you an episiotomy. I had no idea what that was. She was like, so on that contraction, you won't feel it. But that's what we're going to do. So you're going to see blood. I was like okay, so the next contraction they did episiotomy.
Rina Teslica 10:23
What is an episiotomy?
Jazz Manley 10:25
So it's basically where they make a cut. So they're worried that you might tear.
Rina Teslica 10:30
Ah, so they pre cut.
Jazz Manley 10:32
So they did that, and there was blood. And he still wasn't coming in. So eventually, they were like, Oh, I can see his head. And they couldn't, they couldn't see his head. Ryan told me afterwards, they couldn't see his head. But she was like, you know, I spoke to her afterwards. And she said, if we didn't get him out, his heart was gonna stop and they were panicking. So we had to tell you, we could see his head. So you would push and not give up.
Lauren Fenton 10:57
Motivate you gosh,
Jazz Manley 10:58
yeah, yeah. Which I totally, totally get. And then eventually, they just, I felt would just pulling and they just pulled him out. And he was just blue and like, floppy and not breathing. But at the time, they pulled him out, and I instantly started bleeding, a lot of blood. So I was like, oh, what's going on? I went really dizzy. And I just remember seeing like, a little blue foot. And I was like, I'm sure that's not supposed to be that colour. And he wasn't crying. And I was like, oh, okay, God, I'm, I'm bleeding everywhere. They stab a needle in my leg, and then pull and pull the placenta out. And then when that comes out, blood goes all up the walls and the midwives face, which obviously wasn't good. So I didn't know what was happening, but I was losing a lot of blood. But I didn't know at the same time, they were trying to get max to breathe. So it was quite good thing that I was bleeding because I wasn't paying attention to him. And it wasn't that long. It was literally a few minutes where he wasn't breathing, because eventually they got him breathing and he didn't need any intervention. He just, he just needed to like be rubbed, and sort of shaken a bit. And eventually he did start breathing, and they put him on my chest. And that was it. It all. Like we thought, okay, he's done. Everything's, everything's fine. But it was horrible.
Lauren Fenton 12:28
What a traumatic birth. You know, well, maybe we'll come on to it when we talk more about your story. But I'm interested to know as well, what you talked about in terms of the professionals arguing in front of you, and the way that you were misled or misinformed at times. With how that may have led you to feel about the professionals and that trust and belief or that you had in them? I don't know. Do you reflect on that at all, post birth?
Jazz Manley 12:57
Yeah, that that had a massive impact on me, I think from the moment that I was pregnant, of course, their priority is mum and baby. So when, obviously, because the labour wasn't how I planned it. So I was already like, you know, knocked off keel. And then when his heart rate was dropping, and it was a doctor, I assume like an obstetrician or something came in and said, We need to put this on his head. And she tried to do it without any pain relief. And I screamed because it was excruciating. And she said, she literally said, how have you got pregnant if you can't deal with that? And I was like, Yeah, honest to God. She just said that.
And I was like, Oh, my God. So she said to the midwife, get her an epidural. And I'll come back to she left, and I just broke down in tears. And I was like, I can't do this. She's right. She's totally right. If I can't deal with her putting a little monitor on his head, to make sure his heart rate's okay, how the hell am I going to get him out of my body? So, straightaway, before the labour even started, I had that defeatist mentality of, I can't do this. This is another thing that everyone else can do by me. And I cried my eyes out, and the midwife I had was insane. She was so good. And she was like, you can do it, and you've got no choice, because he's coming out of you. So come on, It's okay. She, I remember her like she looked at me as if she wanted to say that doctor's a twat, but she couldn't say that. But she looked at me she was like, I know. I know it. You can do it.
Yeah, but it did from that point on and then she, because it took me so long to give birth. She went home halfway through my labour. And then I had another midwife and that was the one that was arguing with the head midwife. So like that was more professionals that I was like, they didn't really care about me because they're trying to get the baby out. And it was just a totally different bedside manner than what I needed. And Ryan, at one point, offered to give me something to eat. And they were like, no, no, she can't have that. And he was like, Well, why not? She's been in labour for hours. She's exhausted, just let her have a chocolate bar for God's sake. And the midwife was adamant. Like, no. And obviously, she was the one that thought it might end up in a C-section. So I assume that's why she didn't want me to eat anything. But it was just I felt like I was doing something wrong. Like I was at school. And it was a teacher that was like, No, you're not having that. You need to pull yourself together.
So yeah, from that point on, it made me really weary of like medical professionals.
Lauren Fenton 15:58
Not surprised. No one was explaining stuff to you. It was just you will do this. You won't do this. How can you do this? Yeah, horrific. I'm so sorry you went through that. But then max, max recovered in terms of his breathing episode. And can you tell us a bit about the early days of Max?
Jazz Manley 16:18
So yeah, so he recovered. He was born with white hair. Like, I mean, Gandolf white.
I remember when, when, when he was born, and made stitch me up and everything the midwives just, like just took him and went. I was like, where's my child? Where's he gone? And she came back and went, sorry, I was just showing him off to everyone because he was hair. And I was like, I haven't even seen his hair. Yeah. I was too busy getting stitched up.
Lauren Fenton 16:50
That's outragous!
Jazz Manley 16:51
Yeah. But people were obsessed with his hair, like, people would stop in the street just to stroke his head. And I'm like, Get off my newborn please you, germ robot. Go away!
But yeah, he was in. He was a very unhappy baby. And we didn't like know why. So I breastfed for the first six weeks. And I was adamant. Again with it with the labour I was like, my labour didn't go the way I wanted it to go. So if it kills me, I will breastfeed this child, because that is what society says a good mum does. And that's what I want to be so I was like,
Rina Teslica 17:31
And you want to control something as well. I had the same thing. So I totally get what you breastfeed.
Jazz Manley 17:39
Yeah, honest. And like when it doesn't work out, it's the end of the world. Like, we so he was really unhappy baby. He wasn't. He wasn't putting weight on, but he wasn't losing it. And yeah, he was just really, really unhappy and just screamed all the time. And the health visitor said to me, well, that's probably colic. And I said, Okay, well, how do I fix that? You know, what? And she said, Well, what you need to do is try this thing you can buy from the supermarket some drops and it helps, and I said okay, I'll try that didn't didn't work. And this point, he would scream nonstop for about four hours to the point where he just stopped breathing. And I would have to, like, not shake, shake, but like, just come on, come on. And then he would come back and start breathing. And I was like, something's not right. And the health visitor said "Okay, it's the breastfeeding is not working, it needs to go on comfort formula."
So I was like what, what why? So I then was like, okay, my breastfeeding has caused my baby to be unhappy. So I stopped breastfeeding. And I stopped like, straightaway, cold turkey which is never good. That's how you get like mastitis and everything. So I was in a lot of pain, went out and got this comfort milk. But mentally I was on the floor. I was so like, I already was struggling anyway, the fact that he was an unhappy baby, he didn't sleep. He just didn't do anything apart from cry, which meant I couldn't go I couldn't take him to Tesco to get a roast chicken because he just screamed the place down or his throw up or it stopped breathing. So I had not left the house. And I was like, You can't do anything right. You are a shit mum, you can't like your baby needs special formula, because your body hasn't worked. So that was shit. And it turned out that it wasn't even colic it was reflux.
So he went through a year I think it was about a year maybe just less than a year of. He would stop breathing. And it turned out it was because the milk was coming up and just sitting and blocking his airway. I didn't know that. So we kept going to hospital. He wasn't keeping any seeds down. He was screaming all the time. And I kept getting that "you're just anymore. You're just worrying over nothing. He's fine. He's a baby". You know what I got told - "Babies cry".
I was like, I know that! Like, I'm not a total idiot. I didn't know that babies cry. But it's not normal for them to cry this lot, and all the time and not breathe and vomit all the time. Like, and yeah. And I even went with my mum at one stage. So I said, Mum, can you come with me? Because he's not well, I know this upsets me. I know if I go. They'll just say, "You're paranoid. You don't know what you're talking about. You're young first time on, take him home." And I was like, I got to the point where I was like, I can't deal with this constant screaming this unhappy baby. Because at that point, I was like, he hates me. He fucking hates me because Ryan was working. Bless him as much as he could just, you know, for the money because I wasn't working. I was on maternity. So it was me it was just me that had to sit and listen to hours and hours of screaming. And your motherly instincts tell you when your child cries, you feed them, you change them, you cuddle them, you do something. And it was getting to the point where I was like, he hates you. It's it's you he doesn't like, because you know, he doesn't do this with anyone else. But that's because no one else was there. So he couldn't.
So yeah, I asked my mum to come with me. And the doctor spent the entire time talking to my mum and not me. Even though I was the parent, she would look at my mum and she'd go, "Okay, well, it could be a lot of things. But babies do cry, but we'll keep him in and we'll keep an eye on him." And then he had an explosive nappy. And she said, that was it. That's the reason why now you can go home.
And we were back in the hospital not even two hours later, because he'd stopped breathing. But he stopped breathing for long enough that I rang. I didn't ring an ambulance. Because, you know, you know, and you just question yourself and you're like, do I ring an ambulance, or is it all in my head because they keep saying that he's fine. So I rang my sister, and I was like, "He's not breathing. And normally, it lasts two seconds. And then he's breathing again. And he's not breathing now." And she was like, "my partner's coming straight over".
And by the time he'd got to me, Max had vomited, and his airway was clear. But he said, Let's just take him to A&E Anyway, because this isn't normal. And it's not. It's not right. So we went to A&E. And because we'd been in a few hours earlier, they admitted us straight to the ward. And we were seen by a doctor and he just said, "Has anyone ever mentioned reflux?" And I was like, "no, what, what's that?" And he was like, "Well, you know, he can't keep his feeds down. And it's because he's got reflux, like his oesophagus is just too floppy or something." So I don't know. And he said, "he just needs this medication. You need to sit him up after you fed him and stop giving him the colic drops because they make reflux worse."
Lauren Fenton 23:38
Do you feel like when your mum, maybe not the way you described it, when your mum was there, but then also your? Was it your brother in law? Yeah. Do you feel like you've got a different reaction or that you were seen and heard more than when you had previously been?
Jazz Manley 23:54
Yeah, I think because all the other times had been either just me, or me and Ryan, we were both young and we just got fobbed off. Whereas when my mum came, the doctor spent one, she spent a lot more time with us than anyone had ever spent with us in the room. And she thoroughly checked him over and she said, "listen, we'll just keep him in on the ward for a bit and we'll just keep an eye on him." And it wasn't until he had the explosive nappy and then she said to my mum, "Oh, that'll be the reason" why my mum agreed she was like "Oh yeah, I bet it was that" and I was just totally ignored. But that was still I still got treated better than when I didn't have you know, an older person with me even though I mean I personally don't feel like age impacts your ability to parent I think your ability to parent affects your ability to parent and but yeah, and my brother in law was he's three or four years older than me.
Rina Teslica 24:53
Does he have children?
Jazz Manley 24:55
Yeah, he does now but he didn't at the time, but he was a teacher. And he had like a beard. So he looked like a parent, if you know what I mean? So yeah, and we and he just knows how to speak to people. Whereas I get very flustered and I stutter. And again, they spoke to him, and not me. And yeah, we we did get treated a lot better when we had sort of like other people with us and it wasn't just just me, which, you know, was kind of the story of my life
Lauren Fenton 25:33
Makes me so angry.
Rina Teslica 25:35
I can't even there are no words to describe how annoying this is to hear like, but has that changed how you interact with like, now you've got a lot of experience, especially with Max and his disabilities? Are you able to now communicate better? Are you do professionals treat you differently now to then?
Jazz Manley 26:01
erm so annoying no. Like, I still get treated as the over worrying over anxious mother. And I have to take Ryan with me to appointments because he is known as like the sensible one. So if he asks a question, it gets an answer. If I ask a question I get the you're just worrying though, like there's no point in asking these questions. Because you know, what Max is on his own path? And we don't know. So but I'm like, what, that doesn't make me bad for asking the question
Lauren Fenton 26:37
It doesn't invalidate the question.
Jazz Manley 26:39
No,
Lauren Fenton 26:39
What it does is invalidate your feelings or your your concerns, which, which is completely, it's just awful not being heard or engaged with.
Jazz Manley 26:54
So I have to be a little bit, a bit more, I have to stand my ground a little bit now, especially with doctors, because because Max is complex, he has the same doctors from when he was younger. And so like they they know, me and Ryan. And so like, they they know that I'm anxious, because it's obvious when I'm in an appointment. Or if we're admitted to the ward, I'm the one that stays with him. And I you know, I'm anxious. That's, that's nothing. That's not my fault. And it's nothing that should be held against me. But it does get held against me because the doctor is the one that sees him on the ward. And she's his paediatrician. So she'll come and she'll go, "oh, are you here again?" Now, she'll always say like, "I know, you get anxious. So if you do worry, you can always bring him in." And I'm like, but then I bring him in, he gets admitted to the ward. And then I get to feel like I'm wasting a bet, or I'm wasting someone's time. Whereas Ryan doesn't get he never ever gets those comments ever. And it really pisses me off. And we're the same age, but he looks older than me.
Lauren Fenton 28:07
I don't want to be the one to say it. But also, gender may be a factor.
Jazz Manley 28:13
I agree.
Lauren Fenton 28:15
Yeah, I mean, I definitely like I am quite a lot older than you. But I look quite young. And I definitely feel like I sometimes get a different reaction to my husband, even like, I wasn't a first time parent would be but I would ask lots of questions and be like, Wow, and almost get them out before somebody interrupted me or changed the subject or told me I had to leave the room because our time was up. Whereas Patrick, my husband, is and was very good at just taking the space and the time to maybe play back what the consultant has said. And then calmly I mean, he has this kind of manner and his approach to most things anyway, but then calmly ask a question, and you could hear a pin drop, because everybody in the room is like focused on him and ready for the question. So I think I haven't had an experience like the one that you described in terms of that level of not being heard. And we'll go on to more of that in a second. But I see examples of it, even now. And certainly when we were looking for answers or in those early days with Bea a difference in response, which is just ridiculous in this day and age that that level of bias should be impacting on how professionals talk to you and deal with you and listen, listen or not listen to you. It's really upsetting.
Rina Teslica 29:41
It's crazy because I was I was having this chat with Arbs yesterday, actually. I was 26 when I had lower and I also look super young. So but the thing with us were that we were so unaccepting of the situation so we didn't make a big deal out of anything. We were like, my pregnancy that was red flags like flying all over the shop. And we were like, "nah it's fine. It's okay. It will be fine once she's born." But then because when Lua was born facially she presented as a syndrome something going on. So it was the other way round where doctors would be like, oh, we need to check this. And we need to check this. And they were very much on the ball. Arbs and I were like, "she looks fine. I mean, I don't know what you're talking about." No. So it's very interesting to hear that like the the flip side of it. Where we were so relaxed, and they were so much more on the let's test for this. Let's do this. Check her heart, check her eyes check her ears, check this. Her head. Do an MRI, so much stuff? And we were like, why?We can't see anything. Yeah, we were like, kind of shocked with all the testing, because we just didn't think that there was anything going on.
Lauren Fenton 30:59
Do you think that judgement about your age came into the way that they handled that as well Rina like in a kind of flipside to Jazz's story, which is, you know, she's asking the question, then poo pooing and saying nothing's going "oh don't worry your little head about it." But um, was it more like, "Rina, come on. Now there is something you're gonna have to find out."
Rina Teslica 31:21
And yeah yeah, I will never forget, there was one point where they were like this one doctor was like, "I think she's going to need a tracheostomy, and ventilation," it's like coming in, I was floored, I was like, what is it that bad like, and I was so upset with him, that I complained to like the department head of the NICU, because it was outside of my remit of what I thought was going on with Lua. And I understood what a tracheostomy meant. And it was something I did not want to happen. So when he kind of took me to the side and was like, "you need to prepare like this is going to happen at some point in the next couple of months." And I was like, "How dare you?" And I kind of had a massive go at him, and then everybody else. So yeah, there were many times where they were like, Guys, guys, your kid is, you know, yeah, not what you think she is. So, yeah,
Lauren Fenton 32:19
Jazz, you described the process of getting clarity around the reflux and some of those early days with the crying How did things progress in terms of your search for it, because you were shouting and not in the arena needing to be like woken up to the fact that something might be going on with you when you are awake to it.
Tell us about your kind of search for a diagnosis. And you know, when did you first feel like there may be some sort of underlying condition for Max?
Jazz Manley 32:50
The health visitor in the end, she was amazing. But Max was her first additional needs child. And so she didn't know what to do or what to say or how to say things. And so, you know, she'd already said like, oh well he's failed his check. And then we had nursery because Max was still not going into nursery still had put in the floor still in the baby room when he was two and a half. And nursery were saying he's lazy because you spoil him. He's not talking because he knows you will get him whatever, whatever he wants. I mean, honest to god, this is this is like verbatim what she said. And at this point, he was communicating by just taking your hand to what he wanted, because he just couldn't communicate any other way. So if you wanted to go outside, he'd grab his shoes, or we take you to the door.
Lauren Fenton 33:42
That's excellent communication.
Jazz Manley 33:43
But we we didn't know that and like that was never celebrated. It was just, well, he's choosing not to use words. He's choosing not to point, because you spoil him. She said it to me. She said you spoil him and his dad was in the room with me. But she looked at me and said, "You spoil him. That's why he's not talking. He's not eating because you are giving him his favourite foods. What you need to do is stop giving him those foods because no child will starve themselves." Oh, those those were the words right?
Rina Teslica 34:23
How did you react? What do you even say? I feel like I would just be dumbstruck.
Jazz Manley 34:29
Yeah. Yeah, I was I I was just speechless. I actually my eyes so that were tears because I was like, I'm screwing my child up and I'm not even doing it on purpose. Like, I'm really really trying and I'm just getting it all wrong. And this little human is now being impacted massively. So I I stopped speaking in that appointment in that meeting. I couldn't form any words because my brain was just going into overdrive at how shit of a parent I was and I was much very much a she's a SENCo and she said that a child will never starve themselves. So she's right and I'm wrong. So I need to not give my child his safe foods because he won't starve themselves. He'll eat the pasta that I've made. And he didn't. And he starved for two days, and literally, literally starved for two days. And it was, it was the hardest, he didn't sleep at night because he was starving. And the tea time was the second day, I broke down to Ryan and I was like, "she's wrong, he's starving. And I'm not listening to her anymore." And we went out and we got him a happy meal. And he ate it. And he slept. And I was like, I am never listening to someone else, again, about my child, because I know him. And he's not a spoiled brat. And he's not naughty, He just struggles. But then the mum guilt kicked him that will you let your child starve for two days, because you listened to that woman. So even though I'd managed to not listen to her and feed him, I was then getting pounded with mum-guilt. So my mental state at that point was just through the floor, because we were still waiting for all these appointments to tell us if anything, was the matter, while still getting told from nursery that it was my fault. And then having the mum guilt of trying to do what this person is telling me, but then he's unhappy. And I just can't please everyone. I just I just couldn't do it. And that, at that point was when I had my first mental breakdown.
Rina Teslica 36:43
I mean, I'm not surprised at you been through the shitter. Basically. Yeah. Oh, my gosh,
Lauren Fenton 36:52
Are you comfortable with describing what happened? And what happened next Jazz?
Jazz Manley 36:57
Yeah, yeah. So we were all waiting for appointments and things. And this was, this was this was even before COVID. So this was before, like, you know, all the appointments got cancelled and everything. This was just on being on waiting lists. And Max was really hard, because he couldn't communicate with me. And he was having meltdowns. I couldn't take him out on my own, because I couldn't keep him safe, Ryan was working.
And yeah, it got to a point where more and more I was feeling like, he deserves a better mum. The reason why he is delayed is you. I didn't know I was autistic at the time. But my brain was like, if he's autistic, that's your fault, because you made him. So that's another thing that you've done wrong. And, yeah, it my brain, for some reason is my worst enemy. And Ryan worked evenings. So I was spending a lot of time on my own. Max would be in bed, and I was just sat on my own. You know, because I think at the time, I was working in the day, and Ryan was working in the evenings. So we never saw each other. We never slept, we didn't really eat. And, you know, I was would come home from working a full day because I was working full time, and just have this child who's got so many needs, who I thought hated me, you know, I'd have to make him a meal that he wasn't going to eat, he would just throw at me, eventually give him the food that I'm told I'm not supposed to give him then trying to get him to sleep in a car that's too small for him. But he can't have a bed because he just head butt the walls.
And one night I was just sat on the sofa and my brain was like he he'd be so much better without you. Because Ryan could find another another girlfriend or someone that could be a good mum to max and she will come along and she'll connect with him and she'll parent him and be a good mum. And he'll be fine. And Ryan will be fine. You're the issue like that's what my brain was telling me. It was saying You're the problem and you should just kill yourself and that normally went away but that night it didn't it just I was just sat on the sofa and my brain was going just kill yourself. Just kill yourself. That's that's what you need to do to make Max better to make Ryan's life better. It would make everyone else happy. So I took an overdose of tablets and ended up in hospital which, you know, like wasn't ideal, but what upsets me the most is that I was on my own with Max, he was asleep in bed like he was totally fine. But that led to a social services referral because I was his main carer. And I had selfishly, you know, taken this overdose, and I left him vulnerable. Ryan came home and found me and we all went to hospital and I got discharged very quickly without any sort of mental health treatment or anything.
Lauren Fenton 40:35
What? Nothing?
Jazz Manley 40:37
No, I had an assessment and they said, "You need to see your GP to go on antidepressants." That's it. So I was like, okay, that's fine.
So that's, that's what I did. But it like it didn't help, because we were still in the same situation. So it was actually Ryan bless him. Bless his heart. That man had to keep me alive for months. I couldn't shower on my own, he wouldn't leave me on my own. If he went to work, we would have someone else come and sit with me just to make sure I was safe. Because that was the only way we could guarantee that it wouldn't happen again. Because sometimes I was fine. But then sometimes when these thoughts would come in, they were so so overwhelming and strong. They were just as strong as that voice that tells you I love my child. Do you know that that feeling? It was just as strong as that? And so when it when it is that strong? You can't reason with it. And that rational part of your brain isn't there. So that is what you believe wholeheartedly. There's there's nothing else there? So yeah, it was, it was really, really shit.
Rina Teslica 42:00
Wow,
Lauren Fenton 42:01
Jazz, thank you feeling comfortable to do that, and sharing that with us in the audience?
Rina Teslica 42:07
What help did you then get to get you to a place where you were in a better place mentally? How did that what were the steps that were taken?
Jazz Manley 42:18
So I wasn't given any sort of like mental health treatment or support, I had antidepressant tried a few different ones. And they didn't really help. They made me feel like numb, so I couldn't feel happiness. And it got to a Christmas and I was like, it's it's Christmas time. And I love Christmas. And I'm not happy, like I don't care. I don't care that it's Christmas. I don't care if Max likes his presents. And I was like, I don't want to feel like I don't care. Because I didn't feel anything. Like I didn't feel like love for Ryan or love for Max. I didn't feel anything. So I was like, Well, that's a load of bollocks. And in the end, Ryan was like, listen, I think what we need to do is just talk like, we just need to talk to each other. Every day, we will sit down and they will talk and you say you tell me what your brain is telling you. And I've never done that before. Because other people don't want to hear that you want to die. Like it's not, you know, it's not when he a good conversation starter. Especially someone that loves you. Like if Ryan told me that, it would break my heart. I could not cope with that.
But he was like, listen, I want to know what your brain is telling you every single day. Because then we can talk it through. And we can rationalise. So we did. We did that for months. And at the same time, appointments started trickling through for Max. So, you know, speech and language. He had an appointment with them. And they were amazing. They they listened to me and they said, "We totally agree with you. It's you're doing amazing. You can't do any more than you're already doing."
Lauren Fenton 44:06
Wow, that was long overdue.
Jazz Manley 44:08
Yeah, that was the first the first appointment where I was like, Oh my gosh, I it's not all in my head. I'm not crazy. I have not screwed my child up. It was amazing. And it's so funny because any other parent go into that appointment, like because she said to me, yeah, "I think he's autistic and he is very delayed and he's not making eye contact. And he's not communicating at all, apart from with objects." You know, other parents might be like, Oh, my God, like, my kid is only communicating with objects. And he's three. He can't talk. He can't do this. And I was like, yes, someone else can see.
Yeah, I was right. I was thrilled!
Lauren Fenton 44:49
Validation of everything that you've been saying and feeling and so that it wasn't just in your head and it wasn't and suddenly somebody's actually listening and caring and wanting to support you on a way forward, god.
Rina Teslica 45:02
Did this all kind of happen at the same sort of time? So it was all like serendipity where you were kind of getting a hold of your mental health, but also you were getting validation from what you had seen for three years, I'm assuming. Yeah, it was all kind of the jigsaw puzzles were all combining to show this picture. So it must have been, like a relief, sort of.
Jazz Manley 45:27
Yeah, it was a massive relief. And I mean, Paul Ryan, I never once asked him how he was feeling. For a guy who always thought his child was fine to come with me to these appointments, where he's told his child's not fine. And I was so happy because I was being listened to. And I just like, I always just wonder how he must have felt because he was going through this as well. But no one was really asking him how he felt. Well, I wasn't anyway. Because, yeah, but it all did just start to feel like it was finally coming together. The speech and language report got sent to the nursery. So then they started to believe me that he's not a naughty child. It's not my parenting. And so then I was like, okay, we can we can do this. And then COVID happens.
Rina Teslica 46:19
Good old COVID
Jazz Manley 46:20
Yeah, we we love it? I mean, I can't imagine what it must have been like for a parent of a medically complex child, because at the time, Max was perfectly healthy. We just thought he was autistic. And that was it. So to us, COVID was just like an absolute inconvenience, because I was like, Okay, well, that paediatrics appointment that we've waited a year for it's been cancelled, and the physio has been cancelled. And all of these appointments that were sort of our beacon of hope for finding out what, you know, what was happening, had all been cancelled nursery got closed, we were being told, you can't go out more than once for exercise. And I'm like, but this child, sometimes if he wants to get his shoes, and he wants to take me to the front door, then we're going for a walk or we're going out. I've been told by speech and language, if he communicates a want or a need with you, you must reward that because that's the only way she's going to understand that if I ask, I get. So I was like, how am I going to do that in these in these rules, and like McDonald's closed, and that was his safe his one meal, like an actual meal that he would eat and stuff like it was just awful. It was it was really, really bad.
But I, I struggled, I did struggle mentally. But I didn't get to the lowest point that I'd got to before because we talked every day, Ryan kicked up a little bit of a fuss and rang people because I can't do phone calls. And he was like, This isn't fair, it's not right, that his ehcp application should, you know should be stopped and things and that his appointments should be cancelled. And so we then got loads of phone appointments, which I couldn't do but Ryan did, and it meant that rather than feeling like I normally felt, which was 'This is hopeless. Everything's just gone to shit'. Was it okay, well, we'll just do it differently. It's still going to happen, but in a different way, rather than it's not going to happen at all. So yeah, and the first paediatric appointment was when he was three and a half, I think. I think he was about three and a half. And that was like the best and worst appointment of my entire life
Yeah, like, she was really thorough. And she listened to me and she sat down. And she just let me tell her everything about from when he was born until now, which was amazing. I mean, Max was headbutting the floor at this point, because he wanted to leave. So she said, I can't do a full physical examination, but I can see that his skull is too small. And I was like, "what? what do you mean?" she went his head's smaller than it should be. And so she got down and tried to measure it. And he was headbutting her. And she was like, "I've had to go a little bit bigger than I would like to, you know, because he was thrashing around, but that measurement is still too small, so while refer him for a brain MRI", and I was like, "Excuse me, I thought he was just autistic." I thought she'd go "Oh, yeah, he's autistic. See you later." But she was like, yeah, "and has anyone ever told you that he might have albinism?" and I was like, No,
No she went "because he's very got very, very white hair." And I was like, "Well, yeah, that's just Max, he just has white hair." All of these things, the white hair, and the Global Development delay, I was like, what? What's that? All of these things? I didn't know what they were. And the microcephally, which is this small skull, she was like, Yeah, "they just all like, they just don't don't really add up. I'm not really sure what's caused them. So we'll refer him for the brain MRI, and I'll see if we can get him an autism diagnosis in the meantime." So I was like alright, okay, she said to me, "it's obvious, you just have to take one look at him. And it's obvious. So it's not all in your head." And I was like, "oh, it's like you read my mind." I don't know how. But she just said that she is not all in your head. He's he's definitely autistic. But there are other things. So I'd gone from feeling like, ah yes, amazing. She can see it. He's gonna get his diagnosis, we'll be on our way. And that'll be fine. And then it was very much more why's he got a small skull? Why is he got white hair? She was like, Oh, he's got all the genetic markers. And as Oh, right. Okay. Don't really know what to do. What to do with that.
Lauren Fenton 51:23
How did you feel? Did that create a whole other series of doubts and worries and anxieties that led to you into? Not so great plays? Yeah. Or was was it just that? Yeah, you felt vindicated. But you also then had these concerns and all these new things to learn about which would sort of anybody would feel concerned about or anxious?
Jazz Manley 51:50
Yeah, I was in, in two places. So I was happy. And I felt listened to. But then, as soon as you said all these other things, my brain goes into over-drive. Like, what's that? I need to Google that? Why is he got that? Is that something that that happened in the womb? Is that your fault, whereas Ryan is like, Oh, microcephaly, right. Okay. That's it.
Lauren Fenton 52:19
Accepting,
Jazz Manley 52:20
Accepting. Let's move up. It doesn't change Max. Here he is. Whereas my brain was like, Well, what does that mean? What does that mean for the future? Like, I had so many questions. What, like, what causes microcephaly? What, what is the long term prognosis? I didn't even know what it was. And, like, Max didn't look any different to me. I was like, he doesn't look like he's got a small skull. He hasn't got genetic markers. He's fine. He just got a lot of curly white hair. But he like, he's totally fine. So I was like, having a battle internally, between being in denial from what she'd said about the other things, to then being like, well, she must know what she's on about because she's a doctor. And you don't because you're not a doctor. And if he has got all of these other things, then he only came from one place honey and that's you. And he was cooked in your little oven,
Lauren Fenton 53:17
You went back to your, your kind of process that spiralled into blame and doubt about yourself
Jazz Manley 53:25
Yeah, yeah. So it, I do struggle, like mentally with that. And that's something that I struggle with, like, up and down, I still struggle with it now. Especially when it comes to like, if he's got a new condition, a new diagnosis or a new symptom. We, me and Ryan still go around that process of he's the chilled out one and I'm the over worrier and the overthinker. And it does, like cause issues sometimes in our like relationship and things.
I got diagnosed with autism, not long before Max did. But I didn't see myself in max at all, because we're, we're very different. And so I saw the autism in him. But I didn't see it in me. And so I after I had my mental breakdown. And I was on that slow road to recovery and me and Ryan were I was telling him all the thoughts that were in my head every day. And he said to me, "do you think you're autistic?" And I was like, No, don't be ridiculous. Like, because in my head, I had the stereotypical max. So I was like, "Well, I didn't line things up. And I didn't. I'm not anything like Max. So no." And we were watching. I'm a celebrity and Anne Hegerty was on there. And he said, "everything that you're telling me is in your head is what she has been saying on I'm a celebrity." And I was like "oh right" so he said "Maybe we should just go to the GP and get get your referral and just see." And I was totally like, "Well that's ridiculous. That's, I'm fine. I'm not like Max." And the GP agreed with me, he was like, "You're way too talkative and social to be autistic." And Ryan had whipped out his phone, write, you know, a little list of all the things that make me autistic blessing. He was like, "well, actually, Doctor, this is the stuff she won't tell you. So she went wash dishes because she can't touch the gross stuff. And she's got a really, she's a really fussy eater, because she's really so sensitive to sensory things like taste and smell. And, you know, like, if, if a plan changes, she can't cope with it" and all of these things and I was like, you know, shit, when we're going live in this little dossier on me and bless them, and he had researched it. And he was like an "actually, autism presents differently in girls and women. And these are what she like, has." And the doctor said, "right, fill out this form. And we'll see." So I thought this questionnaire, and I gave it him back. And when "you've scored really highly, so I'm going to have to refer you for an autism assessment." He was really pissed off with himself.
Okay, and then we went, like three months later, we got the appointment, and we went, and Ryan came with me. Ryan did most of the talking. And he was like, "she she does this, and she does this. And she does this" all things that I like, "Yeah, I do them like privately, I don't do them in public. Like, I want people to know that I do these things or like, can't do these things. Like I struggle with certain things." And the doctor, the autism assessor was super lovely. And he was like, Yeah, you're definitely autistic. And then as soon as I had that diagnosis, I was like, that's how you need to start trusting your brain a bit more, rather than battling with it. Because you you're not weird. You're not crazy. You're you just have a different brain than everyone else. And that's okay. And like, you and Ryan together will make a really good team. So yes, he's relaxed and chilled out, and he doesn't get as outwardly upset as you about things. But you know, if you weren't there, Max would never have been referred in the first place. And the microcephaly, these things wouldn't have been picked up. So actually, together, you're a good team, you need both of if the balance sort of thing.
So now even though like we struggle with certain things, we balance each other out really, really well. Because I'm weird, and he's not.
Lauren Fenton 57:51
You're not weird. You are you, as you say, your brains just how your brain is. And yeah, it's really interesting that having not wanted to go and pursue or even explore the fact that that might be part of your identity, having it confirmed externally has helped you to feel like, okay, I understand my brain more, and I trust my brain more. Yeah, it sounds like it's a kind of natural part of the journey that you're on in terms of your own mental health and well-being,
Jazz Manley 58:26
yeah. Yeah, it is good. I feel like sometimes they Max's professionals use that against me as, oh, well, you're autistic. So you're gonna worry about things and you're gonna question things that Ryan won't question
Lauren Fenton 58:42
and look where that got you that hasn't helped at all in the past.
Jazz Manley 58:46
Exactly, exactly. So I have to like, I do have to put my foot down now. Because Because when I go into appointments, I forget I do what you do. So I just get all my questions out, because I don't want to forget them or someone changes the subject, and then we won't get back onto it. So what I do now is I take I write them down, and I take them in, and I force myself to calm down. Right. Okay. I have got some questions that I want to ask. And then I go through and I asked each question,
Max, started to develop febrile convulsions
Lauren Fenton 59:19
Just for the benefit of our listeners who maybe don't know what febrile convulsions are. So that's a fever induced seizure. Is that right?
Jazz Manley 59:26
Yes. Yeah. And we didn't sort of like know what a seizure was. The first time it happened. He was just in my arms and he was shaking. So we went hospital and they said, "It sounds like a febrile convulsion, but it's a one off, it's fine." He didn't have any anything else. But what he did keep having was a recurrent fever. He would get a fever every few weeks. But we didn't really think anything of it because kids get poorly. And so about a year ago, he started he had another febrile convulsion. We took him to hospital. And they were like, Oh, "we're not really sure. Like, why this has happened? Does he zone out?" And I was like, Well, "yeah, he sits and stares out the window all the time. But sometimes that's just Max like we don't." And she said, "Oh, well, it could be absent seizures." And I was like, what, why is this another thing?
But obviously, with seizures, you don't know if they're seizures unless you have an EEG, and you catch them. So it was very quickly Oh, we'll get him an EEG. And that'll tell us,
Max is autistic. He is not going to cope with people sticking stuff to his head, let me tell you, so that went down like a cup of cold sick. He. They like they referred him to a special Children's Hospital and they said, these guys are amazing that they've never not once got an EEG result from a child. And I was like, Okay, well, they haven't met my child. And we went and after half an hour, Max was like, headbutting, they put him in a chair and like, strapped him in. And he was headbutting the wooden chair. And they said, "we're not doing this. It's not safe." So then, we went back to the paediatrician, and she said, Okay, that's fine. We'll sedate him and do it. Brilliant. Back to the hospital, under sedation. No, as soon as they started touching his hair, because Max is very, very sensitive. I can't wash his hair, cut his hair, touch his hair at all. And he woke up and again, was headbutting the wall and they said, "No, we're not doing it. This is not safe." And so we have to be, oh, well, we don't know that. And because we can't do the EEG. We don't know if they're seizures. So they said, Keep a diary. So I kept a diary of every time Max just looked off into the distance, I couldn't get his attention, which was a lot, because doesn't live in like people or, you know, the outside world. And so we went back for another appointment. And I said, right, I've got all these videos, and I've got all of this. I've got this diary. And she said, "Oh, you are over worrying about this, aren't you?"
Lauren Fenton 1:02:20
Oh god! Back there again,
Jazz Manley 1:02:24
you asked me to, I thought I was doing a good job. And she was like, "absent seizures don't harm them anyway, they're fine. And you know, he only has febrile convulsions, he doesn't have full tonic clonic seizures. So he's fine. You need to stop worring."
Oh, and at that point, I was like, Oh, my God, this is this is gonna keep happening whenever he has a new symptom, or something that I'm not sure of, I can't ask for help, because they just think I'm an idiot. And it was, it was really, really and it's still, like, traumatic for me now. Like, I don't tell people like that Max may or may not have seizures because I don't know if they're seizures or not. And I don't feel like I can trust my gut with whether they are I will not because I'm not a doctor. And
Lauren Fenton 1:03:21
please trust your instincts.
Rina Teslica 1:03:24
Honestly, because you are incredible.
Lauren Fenton 1:03:26
That's awful. But there’s that very accurate phrase of ‘mother knows bes’t. You know, we all have those gut instincts. And actually do you know what? If they're not right? Nothing ventured nothing gained, it doesn't matter. Yeah. Do you trust your gut sometimes and push and continue to ask the questions because that's the most important thing that you can do to help get answers from Max. And everything you've described in everything you've done just speaks to what a wonderful mum you are, you know that you're a good mum now, right?
You must know you are, because you are and everything you've done is about getting answers and getting the support, you know, not being listened to all those times. It's no wonder that you feel the way that you do and it has you know that gaslighting effect of beginning to doubt doubt yourself, but hear from us and from our perspective as fellow Special Needs parents that you're doing a wonderful job and that everything you're doing is fantastic. I really hope that you are listened to going forward and that you do get more support and answers. Just wanted to step in and say that.
Rina Teslica 1:04:44
Amen I'm so glad you did. Because I feel exactly the same.
Lauren Fenton 1:04:47
so where are you on the you're doing the genome sequencing to the max to see what might be an underlying condition. Is that where we are today?
Jazz Manley 1:04:57
Yeah, so the geneticist was amazing. And she listened to us. And she said, it doesn't matter what anyone else thinks. But it sounds to me like what he has are some sort of seizure. And that added to his learning disabilities and his genetic markers and all of these things. I am 90% sure, that he's got a genetic disease. And, obviously, for us who at the start, we thought he was just autistic, Ryan didn't think there was anything to now being told, actually, he might have a rare disease. And she said disease, which I was like, Oh, "What? What do you mean a disease?" but like syndrome or you know, condition. So that was a bit of a punch in the gut. But at the same time, she was like, Yeah, I see all the things that you see, and I hear what you're saying. And we will, we'll do whole genome sequencing. I don't know what that is, I just know, it's like a genetic series of tests and things. And she said, and we'll just see what comes up. So we are still waiting for those results. And we really, really, really want an answer for
Lauren Fenton 1:06:21
But you do sound in such a better place?
Jazz Manley 1:06:25
Yeah, massively, massively like I now, I mean, obviously, as anyone that has mental health conditions will attest to, there are good days and bad days. And I have days where I'm like, oh, you know, like, if Max is having a really bad day, I'm on your shit mum. Or, you know, you can't sometimes if he's having a meltdown, and he is loud, I'm like, You know what, I need to go upstairs and have some quiet for five minutes. And Max doesn't he won't be left on his own one. One, he's not safe to be left on his own. But two he just he has to have an adult with him. He won't cope without one. He loves to have mummy or daddy next to him. So then the mum guilt from that is awful. But then I have to pull myself together and just be like, Do you know what? All parents need five minutes. Yeah. And your child has really hard work. And he's very loud. And even a non autistic parent would really struggle with him because Ryan's not autistic. And Ryan really struggles sometimes. And we don't all have the patience of a saint. I have more of a max than any other human being on this planet. But I don't have a lot of patience. So now I'm getting better at sort of giving myself a talking to and being like that, just ignore your brain because it's stupid. It doesn't. Like it doesn't live in this world that you live in. It lives in your brain. And I just give myself little pep talks, like just have five minutes, go downstairs and give him a cuddle because at that point, he would have calmed down, because you're not there winding him up by breathing? And, you know, honestly, so. So I do that now. So and I know I'm a good mum, because
Lauren Fenton 1:08:12
Amen!
Jazz Manley 1:08:15
sometimes, most of the time.
Lauren Fenton 1:08:16
Yes, no, don't qualify it. Don't quality it. I know I'm a good mum. Full stop.
Rina Teslica 1:08:21
Exactly. To kind of wrap up, what advice have you got for other parents who might be in a similar situation to you?
Jazz Manley 1:08:30
Erm, so I'm quite fortunate enough to have a friend who's going through the same journey, similar journey that we went through and she's at the start in the early years, and she's really, really struggling and what I always tell her, I tell her a few things. But I always say it does get easier. You learn coping mechanisms, your child will learn communication strategies, like it might not be speech, it might be Makaton like Max learn, I taught Max Makaton when he couldn't talk as like you will adapt and yes, it shit like don't be afraid to say this is really shit. This is not what I signed up for when I got pregnant. But it does get easier. And I tell her cuz she she says that she's a bad mum when he's really struggling. And I'm like, this is anyone would struggle with this. It doesn't make you a bad mum. But you just need to trust yourself and you know your child because they are half you and they were inside you like you made them and so no one on this planet. Obviously the dad is going to understand that child like you will and you are they're human. So you know as much as it is really hard and your brain will tell you things, that little human thinks you're their world. So you can think you're down here and you're a piece of shit on the floor, but they, they idolise you. And so you need to idolise yourself and see yourself how they see you. Because then that's, you know, that's how you can go through it. Because there's no other way of getting around.
Rina Teslica 1:10:18
That is beautifully said. Beautiful.
Lauren Fenton 1:10:21
I hope you hear yourself saying these things.
Rina Teslica 1:10:24
Yeah.
Jazz Manley 1:10:26
Cringe.
Rina Teslica 1:10:28
No. Not at all.
Lauren Fenton 1:10:30
Thank you so much, Jazz. It's been
Rina Teslica 1:10:34
fascinating and enlightening and beautiful listening to you.
Jazz Manley 1:10:39
Oh, thank you. I can't believe you've actually asked me on and let me just ramble to you guys
Lauren Fenton 1:10:45
We loved your ramble.We love to ramble! Obviously, as well, it's important that we say thank you for sharing, very honestly and openly one of the hardest parts of your life and your story. And thank you for feeling comfortable to do that, and sharing that with us and the audience. It's, it's important.
Jazz Manley 1:11:08
Yeah, it's really important because people, when you're like, in, when you're in that people can say to you, "It gets better. This won't last forever. This is temporary." But they're just words, and they don't resonate in your brain. So it's so so hard. And I wish I had someone that was further down the line on a podcast that I could have listened to who could have said, like, "Listen, I've been there. It's really, really shit, but it gets easier. My child went through that, and he's now really happy. And he's in a special school that I got him into. And I've made all these decisions. And he's flourishing because of, you know, because of my parenting. " And so like, if I can just make one other person who sat at home crying their eyes out, feeling really lonely. If I can just make them feel a bit less lonely, then then I'm happy.
Lauren Fenton 1:12:07
Can we end by asking you for what is your fucking normal?
Jazz Manley 1:12:13
Yeah, so I've got a few but the one I'm gonna choose is my fucking normal is when my child sits on the sofa and randomly comes out with Oh for Fucksake!. And I'm really happy that he's learned a new phrase
Rina Teslica 1:12:33
is the best fucking normal. Oh, yes.
Jazz Manley 1:12:35
He says it all the time now.
Rina Teslica 1:12:42
Love it. Love it. Oh, Jazz. Thank you so so much for being on the podcast once again.
Jazz Manley 1:12:47
Thank you for having me.
Rina Teslica 1:12:48
Really appreciate it. And you've been fabulous.
Lauren Fenton 1:12:51
Yeah, if I'm ever up in Cheshire, watch out. We're gonna come.
Jazz Manley 1:12:57
I mean, London scares me. But you know if I'm ever
Lauren Fenton 1:13:01
Yeah. yeah definitely!
Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. 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 1:13:28
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 fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 1:13:52
So thanks you so much for listening all the way to the end. We'll see you next time.
Rina Teslica 1:14:01
Byeee (kissing sound).
Transcribed by https://otter.ai
