Episode 16: Wellbeing with Nicole stephens

~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 0:01

Okay Rina, you seem stressed what's going on?

Rina Teslica 0:05

Do you ever feel that parenting disabled child is chaos like absolute paperwork chaos? There's just so much admin. On top of caring for your kids. It's like, I'm my frickin daughter's PA.

Lauren Fenton 0:20

Ah, yes, you should try the new Hibi app.

Rina Teslica 0:25

An app?

Lauren Fenton 0:26

Not just any app, it's disabled parenting mega organisation, so you can schedule appointments, have reminders for your medication. Have all of their medical notes and letters in just one place?

Rina Teslica 0:40

Hang on. spell this out to me again?

Lauren Fenton 0:42

Hibi, H I B I. It's a Disabled Parenting organisation app. I wish I'd had it when Bea was younger. It gives me a sense of control over well, the uncontrollable

Rina Teslica 0:55

Sounds intriguing. Who doesn't want to organise Disabled Parenting chaos? One notification at a time?

Lauren Fenton 1:01

Haha. Yes. It's my new sidekick... side kicking the shit out of disabled parenting organisation.

Rina Teslica 1:08

That's the least catchy strapline I've ever heard Lauren. Yeah.

Lauren Fenton 1:12

Okay, fair enough. They won't want it. But if you, like Rina, and I, want to give it a go, you can download hibi for free on the app store now.

Lauren Fenton 1:28

In this episode of fucking normal we talked with Nicole Stevens all about wellbeing.

Rina Teslica 1:33

Oh, that was such an lovely episode. I really enjoyed talking to her.

Lauren Fenton 1:37

Yeah, she was gorgeous, and had such great ideas and insights and tips on how to look after yourself as a SEN parent. Um, definitely learnt something.

Rina Teslica 1:49

100% I think I also learned what I have been doing wrong.

Lauren Fenton 1:53

What have you been doing wrong? nutritionist by qualification? Really? What have you been doing wrong?

Rina Teslica 1:59

Eating my feelings....

Rina Teslica 2:03

No, I think I've realised that I when I have a bad day, I like a slice of cake. If I leave the house, I need a treat. Because I've made it through the day. But then it becomes a routine is when it becomes a problem.

Lauren Fenton 2:17

Oh my god, you're making me hungry. I like really want to go and get a babybell out the fridge now.

Rina Teslica 2:25

I've got some babybel too actually

Lauren Fenton 2:27

It's a treat for me... like what can I find in the fridge that's just like a treat... because I deserve it. Yeah, I definitely have that too.

Rina Teslica 2:34

Oh, no, that's terrible. But I am slowly getting better not to say you don't have cake every other day. But still

Lauren Fenton 2:41

let them eat cake. That's a really naff joke. The thing I am getting better at is leaving my phone like away from me. At first you get that panic. But then actually, I find in the evenings if I just leave it charging somewhere else. It's quite nice. It's quite freeing, and clearly good for you. So that's something I'm trying to do that's in my self care bucket if I can put it like that.

Rina Teslica 3:09

Oh, that's such a good idea. I don't think I have the willpower to not have my phone next to me. But that's a good idea. We see we need to take home what Nicole has been telling us.

Lauren Fenton 3:21

It's not me first. It's me too. Yes.

Rina Teslica 3:25

So so lovely. I love that. And I have to remember to think like that, because I think lots of people think that self care is so selfish. When actually, it really isn't especially when you have a second kid like how are you expected to look after your child with all these additional needs? If you aren't looking after yourself?

Lauren Fenton 3:43

Yeah, I really hope everybody enjoys the episode.

Lauren Fenton 4:03

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

Rina Teslica 4:11

I'm Rina,

Lauren Fenton 4:12

and I'm Lauren.

Rina Teslica 4:13

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 4:27

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. Because

Rina Teslica 4:47

really what the fuck is normal anyway?

Lauren Fenton 5:02

Welcome back to the fucking normal Podcast. I'm Lauren.

Rina Teslica 5:06

And I'm Rina.

Lauren Fenton 5:07

Our guest today is Nicole Stevens. Nicole is mum to 11 year old Amber and six year old Skye. She lives in West London with the girls and her husband Tyrone. Amber has a genetic condition called DDX3X syndrome. Gosh just rolls off the tongue. The syndrome mainly affects girls who typically present with learning disabilities, low muscle tone, and feeding and speech and language difficulties. Some also have ADHD or are autistic. It was first identified in 2015 and Amber was diagnosed not long after in 2017. These days the biggest impact for Amber of DDX3X is on her speech and communication. And she has severe learning difficulties. Nicole works in health and nutrition and has worked in the NHS for over 21 years. Welcome, Nicole. It's so lovely to talk to you. Just to kick it off. Can you tell us a bit more about Amber, tell us a bit more about your family as a whole.

Nicole Stephens 6:09

Yeah, sure. Hi. Nice to be here really excited but also equally nervous?

Rina Teslica 6:16

No need.

Nicole Stephens 6:19

So I like you said I'm Nicole. I am mum to Amber. Amber is 11. And she has got that Yeah, super catchy genetic condition called DDX3X syndrome. Which means that she has got severe learning disabilities, mostly affecting her speech and language communication now, but this is over, you know, this is where we are today at 11. But you know, it had significant impact on her development when she was younger. And I became super familiar with terms like Global Developmental Delay, which I had no knowledge of prior to having Amber. And yet genuinely disabilities aside, the kid is amazing. Like, honestly, I am biased. But I literally be because everybody agrees with me. All the time, that she is just like Joy personified. I pick her up from school, she's at secondary school now. And I pick her up every day. It's almost like she hasn't seen me in the morning. She runs out to give me a big massive hug like we have not seen each other for years.

Lauren Fenton 7:32

Oh my gosh. that's gorgeous.

Nicole Stephens 7:37

She is full of love full of joy, and a really, really happy, a really, really happy being. She's just a happy kid. so Skye is six, sky is equally gorgeous and wonderful. She has no disabilities and is typically developing. So I suppose my parenting experience with both of them has been really quite different. And then also the addedness of parenting to children sort of increased the chaos and madness at home. But yeah, she's She is amazing. She's in year two. She's gorgeous. I remember, I remember being pregnant with Skye. And we found out the gender of our kids. Husband was desperate for a boy. I don't know. It's not like we're not in in the 1930 anymore. But he really he really wanted a boy. So missed first time round, obviously, because we got Amber Missed second time round because I was pregnant with Skye. And he didn't he wasn't with me when we had that that sort of gender scan when whenever it was and I think I found out earlier as well with Skye, because there was had been these issues with Amber and I was super anxious. Do we have a boy or a girl? And I was like, we have a girl and he was kind of like audibly like disappointed

Lauren Fenton 8:58

Oh, no, that's awful.

Nicole Stephens 9:01

Oh, oh, oh, okay. Oh, and then kind of I could hear almost like his internal monologue going and then he sort of went "Do you know what? We needed to have another girl for Amber? Because she is going to she is going to be the person that will look at not look after Amber in that sense, but in a way that sisters do." That kind of reflection from Tyrone at the time did kind of make me realise as well that gosh, yeah, you know, spies going to kind of look up look out for Amber in a way that sisters do generally. Anyway. It was just a nice sort of package that, you know, he sort of reminded us that it was it you know, girl, because I said I'm ready. I'm doing too and I'd like to find somebody else, i'm not doing it again.

Rina Teslica 9:49

Oh my god, that's so sweet. Um, what about you? Give us the deets. What? What was your career pre babies post babies.

Nicole Stephens 9:58

So I am 42, nearly 43. West London born and bred. I love old school r&b And Garriage. Like I am a proper I was an old school raver. Still in my mind, I still feel like that is me. No, that is not you. So, you know, I can probably manage a day party or a brunch, maybe once or twice a year. Which I still love which I still love. And my parents from the Caribbean. They are currently there now. I will be

Rina Teslica 10:37

Lucky. lucky them.

Nicole Stephens 10:38

I was speaking with my mom last night - I was like "it's minus four". There'll be there for the next four or five months. That is like half my support network gone. I am married to Tyrone. We've been together for 22 years, I think. I studied nutrition and health at university. So when I listened to a previous podcast, and I was like, oh, like we've got this shared thing, you did you did nutrition, right?

Rina Teslica 11:11

I did Human Nutrition at uni before it was a thing before I even knew what it was.

Nicole Stephens 11:16

Yeah. Same. Well, I did. I did nutrition and health many moons ago. And I think, you know, growing up when I was younger, I was always really, really interested in food. And I was I then became really interested in food from a healing and wellness perspective. I like eating it by also just, you know, it's such it's so powerful. Anyway, so I did Nutrition and Health at University many, many moons ago, and then went into working in NHS and I've been there. It's 21 years, and I think it's almost probably pretty much to the day.

Rina Teslica 11:16

Oh, wow, happy anniversary work aversary.

Nicole Stephens 11:57

And I've always worked within the field of public health nutrition or health improvement or health promotion in the NHS, and I currently kind of oversee one of the Children's Services in West London.

Lauren Fenton 12:13

With that kind of health Well, being NHS, I guess background, one might think that you were well positioned to not that anyone can be really positioned for, you know, the the less typical parent journey when you're not expecting it, but how did you pay when kind of Amber got her diagnosis?

Nicole Stephens 12:34

I got pregnant with Amber a couple of years after being married. And we were super excited. We had those first scans, it's at 12 weeks, right? And the hospital that I was at, somehow managed to mix up my bloods or something went a little bit wrong. So I had to, they had to, I had to go back and have them done again. And those bloods came back, indicating that there was a high risk of having a baby with Down Syndrome. So we decided we were going to have the procedure. Amniocentesis. It came back that we weren't. We came back clear. So progressed with the pregnancy. As usual. When I look back now they had I did have extra scans. But the pregnancy was normal. I think Rina you mentioned like having a gut feeling.

I remember being before the 12 week scan, I remember waking up one night, almost inconsolable, I was chest my chest was struck with this panic that something wasn't right, that something that there was something wrong and remember, Tyrone saying, you know, what's the matter why, you know, it was like early hours in the morning and I was crying and he said, you know, what's the matter? And I was like, I just feel like there's something wrong there's something wrong and he was like nothing's you know, there's nothing wrong that you... you know, do you feel like you're feeling okay, and I was like, I feel fine, but I just feel like there's something wrong and he was like, you know, like, let's not call that sort of thing in like, you know if there's nothing wrong, just go back to sleep and I couldn't I got up and I sat in the living room. But that feeling it was it was as quickly as it came on. It disappeared and for the rest of my pregnancy, it was easy breezy. I loved being pregnant.

Amber was massively overdue. She was a super colicky baby like she and you know she wouldn't settle she didn't settle very easily so I am super versed in sleep deprivation. They will be some time I remember I think I've probably been up 24/48 hours with her on occasion what became apparent later on down the line is that she was it was more than like she was slightly aspirating throughout that time and we just didn't we just didn't know. So Lauren, you you asked whether or not I suppose my background in in the NHS and health kind of equipped me for it didn't. And when I look back on that time, as a new mum, although I had no measure, none of my friends at the time had babies, I was the first one in my group. And I obviously I didn't have any of the children. I didn't really, I didn't really know, what was normal or what wasn't normal. And, you know, I was going to some of these groups, and yeah, she probably wasn't doing all the things that the other babies were doing at that time. And so it wasn't until she told me about three, four months that we started to see that there were some sort of, there were delays, there were milestones that were being missed, right. And then that was that just then became a flurry of appointments, investigations. And at the time, I remember again, being really, really anxious and just Googling the shit out of any and everything, you know, I will put into google, my baby doesn't sit up, my baby doesn't roll over. You know, what does this mean? And, you know, things will come up and I had a list of query query, you know, medical conditions that I thought that maybe Amber would have and I remember speaking to my health visitor, and she said, You know what, we're going to refer you to the hospital to have the paediatrician kind of look at Amber and I went in with my list. And he took one look at me and was just like, this is an neurotic mum and neurotic first time mum, and he went, he used these words, her development adequate. And I thought, oh, okay, adequate. Sounds good to me. Okay.

And it was really funny because that same week, my health visited also made a referral to the community, paediatrics department, and I got a phone call, I think my appointment at the hospital a bit on the Monday and a phone call on the Wednesday from the community service. And they said, or do you want to come in? You know, we've had a referral, we've got an appointment on Friday. Can you come in this Friday? And I said, Oh, no, I've seen the hospital doctor and he said that you know, and that's fine. And she went, you know what, just come in anyway, there's no harm in us also taking a look. Okay, for sure. So off I popped in, and by this time, I'm was about six months old, and she asked me those questions she observed and there was also a physiotherapist in the assessment as well. They did an assessment which took about an hour, an hour and a half. And at the end of that, the paediatrician said, you know, Amber's development is probably half a chronological age, she she's got developmental stage of a three month old and at this point, she was six months, right, we are going to run a whole host of tests. And immediately I went into, Oh, my goodness, like panic mode. She had brain scan, she had blood tests. And we were at Great Ormond Street Hospital, and I thought she was going to die. That's what I thought that whatever they were going to find meant that my amble wasn't going to be with me forever. And I think that that stayed with me for a long, long time.

Lauren Fenton 18:15

Did you voice that to anyone? No.

Nicole Stephens 18:19

No, I didn't. I also carried with me that I've done something wrong. Which is like inter... I'd internalised that there must have been something I'd done during my pregnancy. Maybe I didn't take my vitamins in time. Maybe it was that like small glass of wine that I had before I knew I was pregnant, maybe it was the blue cheese, I ate on some cheese. It was all of these things that I just was like, I've done something that's fucked up. Basically,

Lauren Fenton 18:46

I think every I mean, it's Rina and I are nodding furiously here, because I can't speak for everybody. But I've certainly heard from an awful lot of parent carers that and especially mothers, that they go through that. I remember having a dinner with my husband, like, in the early days, like, on a rare occasion that we'd got out where we actually, I sort of confessed to him. It was my fault. I've done something and then he said he thought it was his fault. And then we had like, this little blobbing moment in a in a restaurant where we confessed this to each other.

Rina Teslica 19:20

Did you because it's like hearing myself talk. So thank you. For me, I felt exactly the same but I also because I also thought she was gonna die like any given time plus, because she wasn't breathing and she was on machines bla bla bla bla added to that pressure but also that self preservation for me kicked in where I just wouldn't allow myself to get too attached to her because I didn't actually know how long she was going to be around for. So then I didn't actually realise that I was doing it until much later, where like, she came home. I think it was like, two three years after I'd given birth to her that I felt attached to my child because for that long, I was like, if she dies, and I've fallen madly in love with you, and I will be absolutely heartbroken. So I would rather keep you at arm's length. I mean, you're my daughter, and you're my kid, of course, I love you. But it's, I didn't want to create that form of attachment, because I just didn't know did you do that? Or were you like, just head over heels or

Nicole Stephens 20:30

I think that listening to you II? You know, it's an experience. Like, I've heard it loads and loads that I was completely opposite. I was, I was like, why I'm going to she is going to be my everything from now on, just in case. And she, she was also very clingy baby. I would, I wore, you know, I carried her a lot. I went completely the opposite. I was just like, right? I you know, she, our nobody had ever said that she was gonna die. I just

Rina Teslica 21:05

No, no, no, no, no one said she was gonna die to me either but

Nicole Stephens 21:08

I just made. It was this thing in my head? And I was like, right, you know? And she just in case, I'm going to, you know, she, I'm just going to make the most of how, yeah. So I was completely the opposite. And I think that that was also a little bit of an added pressure added pressure on myself to be this amazing mum, this super caring mum, I didn't really let anybody else look after her really, you know, like, I just really took that responsibility on I took her to all the appointments, partly because, you know, also my husband's job didn't really allow for just, you know, they are my job is more flexible. And I say flexible. I use that term loosely. I'm relieved, you know, to take it to these appointments.

Rina Teslica 21:59

Also you're expected to because you're the woman and you're the mum, so

Nicole Stephens 22:04

100% that it was all of these appointments. And yeah, it was it was it was a hard few years. And I can't remember if I said this already, but I just feel like I survived. I was I was in survival mode. Yeah. I mean, there was moments of absolutely, joy and pleasure, I loved being a mum. And it was amazing. But I was also very much just surviving and getting through all these appointments and looking after her and then, you know, you're not just mum, but then you know, physio give you all of these exercises that you've got to apply. And I was doing those at home as well. I was making sure that nursery were doing them when she started nursery I was doing speech, you know, all these interventions, I was trying to get results to get you know, it was just extra there's all these extra things that I was doing to help support her development or her progress or Yeah, it was tough going in.

Lauren Fenton 23:01

Did it change when she got did that way of coping change at all, after she got her diagnosis or

Nicole Stephens 23:08

so we spent a long time umming and arring about whether or not we would have another child based on the fact that up until you know, 2017, we didn't have a diagnosis for Amber. The paediatrician said right, we can actually enter you into this into one of two really large studies that may or may not bring a diagnosis for Amber. And we discussed it. And again, Tyrone was kind of like, we should do it. But, you know, ultimately, it doesn't change Amber. A diagnosis doesn't change who she is, it doesn't change anything. And also, all the health professionals had said that it's unlikely that this is a hereditary condition that would be passed on to any other children. And by then, we decided that we weren't going to try for another baby. I had Skye in 2017. We got a letter A few months after Skye was born to say that we think we may have found the cause of Amber's delays, do you want to you know, there's an appointment for you. And that appointment was something like three months away? Saying to my friend, you know, we've got this letter, they think they found out the cause of Amber's Global Developmental Delay, and she was, oh my god, like, when's when's your appointment? We were pregnant at the same time. That's how I met her. She's like, when's your appointment? I told her, it was, like, February of 2018. It was like, she was like, February. Oh, my God, like, how are you going to wait that long? And I was like, to be honest, like, it makes no difference. We've been waiting all of these years anyway, like waiting a few more months. It's neither here nor there to me.

We got the diagnosis. I remember sitting in that geneticists room, and I burst into tears and she said, What's the matter? You know, what's the matter? Why are you crying? And I said, I just thought this was my fault. And that's the first time I'd said those words. I just thought it was me and he was like, you didn't say anything. Anyway, so in that consultation, the paediatrician gave us a, you know, there was very little known about the condition, there is still relatively little information about the condition. She gave us this leaflet that an organisation called Rare, Rare had produced, which had findings or sort of insights from this small collection of parents whose girls had been diagnosed with this condition. And I read through that, and I was like, Oh, my days, this is, Amber. This is literally all of these girls are Amber. The girls are all generally happy and joyful by nature. Sleep, they will never able to self settle. That was something we had battled with for years.

And I hope my mum won't mind me saying this. She's you know, she raised us in the early 80s. And cry it out was the way that you taught your children to self settle. And so that's what she knew when she was like, you've just got to leave. It's a crime. She'll set herself because she doesn't fit. And it was heartbreaking. And it was hard. And I remember one occasion, we moved back into this barn before we moved to where we live. Now we live with my mum and dad for a little bit. And my mom looked after her. Tyrone and I had gone to a wedding. And they came back and said, Oh, how was Amber? Did she sleep ok? I think oh now that's it..., I think I'd asked my sister to come over to help look after Amber. And they said, Oh, yes, she took a little while to settle down. And I said, Well, what do you mean? And they said, Well, we left her in the cot, she was crying for about 45 minutes or an hour. We don't do that, because that's not what we do. my mum was like, well, she's not going to learn to sleep if you know if you don't do it. And so sort of reading that really sort of helped to validate some of my experiences that I'd had with Amber, that I just suppose didn't realise had been part and parcel of her condition had been part of part and parcel of making some of the parenting more challenging. And I had probably just thought it was me not doing it right.

Rina Teslica 27:14

How was your like? Because obviously being a first time mum, like there's all that, like sleep deprivation and all of that, how did then you've got the added pressure of like, now having a child with a disability? How were you feeling in that? In that time? Because it's one side, like, being a new mum has all of its hormonal things going on, but then adding this to the pat? What was going through your head? How were you surviving? Did you have help? I also I struggled personally with like, accepting the disability and then having my wider circle, who are quite traditional and have a backwards way of looking at disability, which then impacted how I saw it. So that added to the mix. What was it like for you?

Nicole Stephens 28:11

So I had I had very little knowledge or understanding or experience of parenting. Like I said, I was the first one out of my friends. To have a kid, let alone a kid with a disability. I didn't know anybody with a disability. I didn't. I never none of the groups I went to there weren't any kids like Amber there. I suppose my family just we all just, you know, Amber's just Amber. She was accepted. She kind of, you know, I have had comments, not off my immediate family, but I have had comments like, oh, you know, she'll grow out, you know, she'll grow out of it, that sort of thing. I have been told not again, by my family, but like, people in my extended network, you know, I'm on a Caribbean background and culturally, you know, and, you know, there's a strong emphasis on sometimes like, church and prayer, and, you know, maybe you didn't pray enough and I was like, No, that's not how this works. At least I don't think it is. So, you know, that was it was that was really challenging, but I'm really grateful that that that didn't come from my family. So you know, my family just were really supportive and helped as much as they could in in the way that they thought they could. Yeah, but I just you know, painted on this facade of everything's fine. It's fine. Yeah, yes. Amber has these disabilities will be delayed or they will just delayed you know, it's global developmental delays at the time, but oh, you know, it's easy breasy. I'm amazing. I'm breezing through this.

Rina Teslica 30:03

But really what was your well being like, in that moment, exhausted,

Nicole Stephens 30:06

I was overwhelmed, I was surviving on the full fat Coca Cola, and coffee. I I was always back at work, I was tired, I was really, really tired. And there will be some times where, you know, I would have two or three appointments in the same week. And now understand that I was having to relieve that traumatic experience of having to retell my story over and over again. And there will be some times I would come home and that, you know, at this point, you know, I, sometimes I'd come home and I'd sit on the sofa, and I would just be like, nobody, nobody fucking talk to me for 20 minutes, you know, are you okay, what can we do? And I'd be like, I just don't want to talk. And, you know, it was that that was the only way that I could, I suppose process, some of the stuff that I'd had to have gone through in those, you know, in a short period of time, if I'd had back to back appointments. And then just sort of, I would just sort of bounce back and just go back to being like, everything's fine. I've spoken to friends now who have got children with disabilities, and they have spoken about, almost like a grieving a grieving process of grieving the child that they thought that they would have. And I must admit that that is not something that I feel like, happened with me. And I wonder whether it's because I just went into this, you know, maybe it might come later, but I just threw myself into, everything's fine. And we'll just keep going. And

Lauren Fenton 31:52

how would you define your well being at the time, then?

Nicole Stephens 31:56

I didn't think about it to be honest. And at the time, when I looked back on it, again, I was very much in survival mode. And I was the coping strategies I had, were probably probably, they were having a detrimental impact on my physical health. Which I can come on to a little bit later, but I just I didn't even think about my well being at that time. It wasn't a priority. It wasn't something that I acknowledged was it was a priority wasn't a priority. wasn't a priority. Yeah, it was just trying to get through all of these appointments. Get to work, keep the kid alive. And let everybody you know, present the image of, of being fine and coping and coping.

Rina Teslica 32:54

Was there like a turning point?

Nicole Stephens 32:57

Yeah, there's been a few times because I default back into perfectionism, like it is it's a curse, right? And I call myself a recovering perfectionist because of that.

Nicole Stephens 33:13

And I need constant reminders. And those reminders are sometimes quite brutal. I genuinely can go for quite a long time, just with my head in the sand and just carrying on like normal and to be honest with you, I did that with Amber for years. And I was almost wearing that. I was exhausted. And I was probably wearing that exhaustion is about a badge of honour. Look at me, I'm so tired.

Lauren Fenton 33:50

Why do we do that?

Nicole Stephens 33:52

All of these things. look at me, aren't i great? Nothing to see here. Yeah, I am coping with me why you know, disabled child, which is fine, you don't need to pity us look, do i look like I'm struggling. It was that it was just this image that I was portraying that everything was okay. And everything was fine. And like I said, there's been a couple of of times more recently over the last few years that have had real moments where I've sort of been really forced to look at my wellbeing and take stock of that bad habit of trying to be perfect all of the time. The first one that I can really talk to is after I had Skye so like I said it was quite a you know, Amber was for nearly five when I had Skye so I'd been doing this for five years as a mum. Had Skye and wasn't getting that much sleep. So again, just went into sort of that default lots of caffeine that actually it was If it wasn't even caffeine anymore, I'd upgraded to lots of wine.

Rina Teslica 35:05

I love that!

Nicole Stephens 35:07

At this time times, also working on it on a on a Saturday. DJ-ing, so he would come home like really, really late. And I would think of that time was me time. I thought this was me time I thought this was me, looking after myself and doing self care, I would sit in this spot on the sofa, the table that I've got my laptop, on now was my little wine and snacks table. And once the kids have gone down, I was like, right, I'm gonna have two or three glasses of wine, I was drinking very little water, I was getting very little sleep. And I was doing nothing in terms of physical activity. And I did that was self care for about a year or two after Skye for about a year after Skye was born. And then I started to get episodes where I just felt very unwell. And like I felt tied to my bones in a way that I had never felt tired before. And I was I kept getting ill like chest infections, colds. And I remember going to the doctor and saying, I just don't feel that well. And she was like, Oh, that, you know, let's run some bloods came back pre diabetic. And that was like a wake up call for me that actually, I'm not looking after myself. And if I do not look after myself, then this is now going to be I'm on a downward trajectory.

Rina Teslica 36:35

Yeah.

Lauren Fenton 36:37

Did anybody around you at the time kind of signalled to you that they felt that you weren't looking after yourself? Or that you needed more rest or anything? Or was that were you kind of just oblivious to that.

Nicole Stephens 36:48

My mum does all of the time she was doing it at the time, she still does it now. And I just ignore her.

Lauren Fenton 36:54

It is really hard to hear from other people. And I think what we do sometimes hear from other people, though, is the stuff that reinforces it. So, you know, earlier you were talking about you know, as women, as parents, as mothers, we often just go into that, like, I'm going to be amazing at this and the best at this. And just so I can handle everything more, more more. And I do think I find that sometimes you get this kind of negative reinforcement that is people saying like "oh I don't know how you do it. You're doing another thing? Ahhh you're managing all of these things, and it's like this, you sort of command this respect for being, like tired to the bone, as you put it by managing all these things. And it's, it's, it's really, it's really destructive? Why do we do that to each other and to kind of give that respect, and not that we shouldn't respect each other, but kind of Yeah, validating that that's the way that you should be doing. And when actually, as you've described, you need to look after yourself.

Nicole Stephens 37:51

That was like the first real kind of wake up call that I needed to, to be better at looking after myself.

Rina Teslica 38:01

So what did you change? Like? So what were the steps that you took to then change your lifestyle change the way that you were doing things, making time for yourself?

Lauren Fenton 38:12

Help!

Nicole Stephens 38:16

I'm still not winning it. So my advice is, is only coming from a place of these are the things I've tried. And these are the things that work worked for me i at the time, I was like, right, I'm going to I started doing my local park run on a Saturday morning. So I would leave the kids with Tyrone, I would go into my 5k and think I was going to die at any moment in time around the 5k course. And I did that for a long time. I just started making sure I was drinking more water. Just really basic things that I knew that I should have been doing my professional background.

Rina Teslica 39:00

That was what I was gonna say did you go did you revert to your professional hat and be like, if this was a client? This is what I would tell her to do.

Nicole Stephens 39:07

Yeah, exactly. And also just from a, like a behaviour change perspective, I you know, I was really realistic in what I could manage around my family and my situation. So that's not me signing up to a gym that I probably will never ever go to just because I have to do it when somebody else can look after the kids. I can't just call a babysitter and say oo could you pop over in the car to the kids for a few hours while I go to the gym. It really has to be something that works within us and like I think I said earlier you know, I was really up until again fairly recently. You know, I wouldn't let other people look after Amber really. My mum and my dad and my siblings, my brother, my sister, that's it you know outside of our immediate home so it just made things like that. It just made well being practices that It involves me being outside of the home or outside of the home for extended periods of time, more challenging.

Rina Teslica 40:07

So what does your wellbeing bucket look like now? What are the things that you do to get you to a place where you're feeling good, and you're able to be there for Skye and Amber and Tyrone and just live your life to the best of your ability?

Nicole Stephens 40:24

I one of the.... you asked me earlier, you know, if there was anybody who had kind of been saying, you know, slow down, you know, take a minute, you know, what's going on? My mum has always done that. But in 2020 pandemic year, again, I got into almost breaking point. And Amazon man came to my house and Tyrone was have you ordered something again, I thought, did I order something again, I know I order lots of stuff. And I can’t remembver. have i ordered something. And my gorgeous best friend had sent me a copy of this book called "Tender", the imperfect art of caring, it's by a lady called Penny Wincer.

And I read this book, and it really sort of changed my whole understanding of parenting a child with a disability and being a carer, there's a chapter in there on self care. And again, that was really transformational for me reading through that chapter. And I draw on a lot of the, the insights from she, you know, she talks to a lot of people who were, who were carers, whether it be parent carers, or caring for elderly parents are caring for partners. And one of the people that she spoke to in the book is a lady called Susie Reading, and now follow her on Instagram, and I bought probably all of her books. And her favourite, my favourite one, this little book of self care. And the reason why I love this one is because I don't have the energy, the time this the brain space to have these elaborate self care practices. And this book has got things in there that I draw all the time, and that I can fit realistically into my day.

So when you asked me like, the things that are in my bucket, erm I build in things, you know, I think in the book, she refers to them as, as micro moments, I refer to them as like micro moments of joy and calm. And they are things that I can squeeze into my day in the matter of maybe five or 10 minutes, that just allow me to sit, maybe I sometimes I do this in my garden, I go and sit in the garden with a cup of tea or leave my phone and laptop, wherever I pause from work, I sit in the garden and I do nothing. I think that the inner thoughts pop into my head, I just let them go by I'm not going to think oh god, like that thing that I needed to do, I'm just not going to do it. And I try and do that for 10 10/15 minutes. It just gives me that, that time and space away to kind of be stilland breath. And what I when I started to do that, what it also enabled me to do in that stillness is really listen to my body and think actually, do you not I am tired. And I'm going to instead of responding to that by drinking more coffee, I'm going to respond to that by having tried to have some more rest or get some early nights in. And, you know, there's loads of things that I've, I've now sort of learnt and understand more from a wellbeing perspective. outs even outside of my you know, background in nutrition and health, just really practical things like the importance of sleep. And sometimes my sleep is broken Amber gets up in the night, probably four times a week. So my sleep is always going to be broken, I can't control that. But what I can do is make sure that when I can, I'll try and catch up so sleep I didn't, I didn't know this right, rest has an accumulative effect. So the benefits of sleep and rest build up over time. So even if you can't even if you're not getting whatever it is that you know that eight hours of sleep per night, if you can get rest where you can that's, that's readdressing that that sleep deprivation, it's topping that it's redressing that imbalance. And sometimes that just looks like me resting on the sofa. And I do yoga nidra

Lauren Fenton 44:27

I love yoga nidra oh my god, it's amazing. Do you want to explain what it is?

Rina Teslica 44:33

Yes, I've never heard

Nicole Stephens 44:34

In the pandemic when everything moved on to do one of our local organisations, contacted family in the borough that I live in set up these yoga nidra sessions, virtual sessions and I was like, aww i do like a bit of yoga I'm gonna do this was on a Wednesday night. I've got my yoga mat out and then logged on to the Zoom. And the wonderful teacher took us through what I can only describe as a have a deep relaxation practice. So there was no, I was like ready to do stretches and positions and poses. No, she said, lie down and get yourself comfortable. And she used to say, this is the practice yoga nidra is the practice of doing nothing. And she would take you through this beautiful guided meditation where she almost kind of encourages you to do this sort of body scan and relax every single part of your body. I must admit, though, Lauren, when you know, I did the zoom call, it takes me off to sleep. So I probably only heard about 5,10 minutes.

Lauren Fenton 45:40

I have to set an alarm. Yeah, I just fall asleep. So I do on YouTube, I basically just if I tired in the day, and you know, when you just feel that like total exhaustion. And if I've got a moment, I think, well, I can't go and have a nap. Because I just don't, I don't nap in the daytime, it's just not going to work. And you know, I've got time for a whole nap. But if I can find 10/15 minutes, and I'll go and I'll lie down, put a YouTube thing on of yoga nidra and set an alarm because I will fall asleep because it just puts you into such a deep relaxation. But then when that alarm goes off, and I kind of rise out of it. It's so different for me and I'm sure you know, everyone's experiences are different. So it won't be the same for everybody. But I feel rejuvenated and refreshed after doing that rather than that kind of like sluggish. Oh, do I really have to. I fell asleep and now i need to get up.

So yeah, I really like it as a little hack of something you can drive for like 10/15 minutes to really just rejuvenate you and your day. But I was I was also going to ask how did you feel physically then with this change from kind of being on the precipice of a diabetes diagnosis to making these small changes in your life? How do you feel physically now?

Nicole Stephens 46:54

Like, I've got new life like that sounds really dramatic. But at the time like you know, I said I was feeling like bone tired like I was feeling bone I was having like joint aches and I just thought is this is this what it's going to be like for the you know for the rest of my life now like that's, that's gone like I don't have I don't wake up bone tired. I don't wake up with aches and pains. I have more energy like I'm more energised. Sometimes I am tired. We're all tired very often. And that's probably never gonna go away. But I I feel more energised. But not just physically I suppose. But mentally and emotionally. Like I feel like I'm much more able to parent better. I'm a nicer Mum, I'm a nicer wife. Yeah. It just makes me a nicer person when I can, when I have prioritised myself, and my wellbeing and my self care. And I've taken time out to do that for myself. It just brings me back to being a nicer person.

I wrote something down from the book. And it said that taking care of yourself doesn't mean me first. It just means me too. And I was like, it's that it's not, I'm not, you know, I'm not saying, oh, you know, my well being and I, you know, my timeout is it's me and me only, it's just me too, like everybody deserves to have a little bit of timeout for themselves. And that that can be really, really difficult when you're parenting a child with disabilities. But what helps that is being open to and accepting of any help and support that you can access. And that might be within your, you know, your immediate support networks calling on those. So for me, that's my parents massively. So when they're not here for four or five months of the year, that's really, really hard. But I recently, you know, I just messaged my brother the other day, and I said, look, there are some dates that I would really, really like, for you to be able to have the girl so me and Taryn can kind of go and do some stuff together. Would you be able to do these dates? Text back straightaway? Yeah, no problem. It was just that and Oh, Nicole, perhaps would have just been like, oh, well, I just won't do it. And I would just push through. And been really struggling and probably resenting the fact that nobody's nobody's asked me, nobody's asked me if I need any help.

Lauren Fenton 49:22

But they don't know. Because it's really hard, isn't it to ask for help. I especially if your coping mechanism is to just do it all and but you but for me, it's also about control, I find it quite hard to relinquish control. So feels like you're, you're not perfect after all. And it's just so important to like, dispel that and ask for help. It's interesting you just spoke about a physical reaction to not looking after your wellness and I suspect there was potentially you know, there was an emotional contribution to that physical not feeling so well as well.

And well, I've always had back problems and I think back problems are quite common and people are now around my age early 40s women in particular, but particularly with kids, and kids with disabilities, I think it's like one of the number one complaints physically of carers and I've always kind of just dealt with it in them when when when my back's gone, and then like got over it, but three months ago, they went again, you know, got a bulging disc, and it wouldn't clear with all the normal things. So I'm actually having a steroid injection on Monday to like a nerve blocker to try and reset get over the pain and it it's just really like, I feel like that's been a little wake up, like your way back. Getting your diabetes scare. I feel like that's been a wake up for me in terms of my physical wellness of this thing has always been niggling in the background, but I haven't fully addressed it. I've always been like, Oh, it's okay now and just cracking on and it's, it's really difficult to flip that and say, Actually, I really need to do something fundamental and change my lifestyle and change the way that I approach lifting Bea and managing kind of my back and my pain in a different way. So yeah, it's, it's really useful to hear this because this is going to spur me on this conversation with you, Nicole is going to actually spur me on.

Rina Teslica 51:20

Yeah, and I think are important. And having read those, you know, that book tendering and just kind of been delving more into, you know, listen to other mums that I'm in contact with, and just Yeah, being more interested in that part of caring being a carer and that the impact that they can have on your, on your health and your well being. And again, I was kind of looking back at some of the stuff that I remember kind of reading through in those in those books a few years back, and in the UK, there's something like 5 million unpaid carers in the UK, like official figures, but actually, unofficially, they think it's more like over 10 million. Right. And the majority of them, as we've discussed, it's going to be us women, out of that, you know, the majority, like 60% have got long term health conditions or, or health conditions that they're, they're battling with themselves. And what we know is that, you know, as as, as parents who are caring for children who have got additional needs, we are going through stress, whether that be really noticeable stress, or just underlying stress that just ticks over every day, it's just there in the background. And we just get used to living with that level of stress has a really, really negative impact. Takes a toll on our bodies. So yeah, you're talking about your back Lauren, like, you know, that middle there is, is letting you know, that, hey, you're doing too much. And want you to slow down. Hey, we need to look at something.

Lauren Fenton 53:01

Yeah. Yeah. It's it. That that physical toil that the I guess pain and kind of physical manifestation in people as well, I think it's really important as well to say it's not, that's not like the fault of the child. in our cases. It's not that the child has done that to you what is done that to you is kind of, I guess what you said again, the majority of these carers are women, it's almost like the default position of the society and people that assume that you will just like devote yourself to raising this child and doing everything you can of course you're doing those things, but you it's not without cost. If you don't also do the "and me bit", you need to look after yourself, too. So yeah, I think it's, I know you have like toyed in with sort of side hustles around well being outside of the NHS, but in your day to day work. Do you come into contact with parents with children with disabilities? And do you see a lot of what we've been talking about?

Nicole Stephens 54:03

Yeah, so in my day to day, you know, many of the children that book access to service that one of the services that, that that my team, run, many of them will have additional needs or disabilities. And many of those parents, you know, sometimes having conversations with them. They struggle with a lot of the things that I've talked about and things that I've struggled with. And being able to have those conversations with parents in a sort of professional capacity, even though they're sort of opportunistic contact, you know, they may not have come they've not come for me giving them advice about their wellbeing they can't because their child needs to access the service that that my team are providing, but it's being able to have those conversations and say, hey, you know, you're here and this is great that you're doing this for your child, but actually, you know, what else are you doing? What are you doing for you, because this is really hard. This is really hard. And it's really important to one acknowledge that, you know, one of the things that is really important and that I've, I've learned over the last few years is this is having self compassion, this is really hard. And like you said, Lauren it's not the child's fault at all. But it but it's hard, and it's okay to feel that it's hard. Acknowledging that and kind of being gentle and kind to yourself, and, and taking away those feelings of guilt and shame around those feelings. And then kind of channelling that into it being okay for you to also take time out for yourself.

Lauren Fenton 55:47

And, and say, Help.

Nicole Stephens 55:50

Asking for help. And being honest about how hard you're finding it can open you up to being able to access support. I asked for help from social services, I referred our family for Children and Family assessment. It meant that a social worker had to come to our house, which in many families is going to be like a big thing. But definitely within the West Indian household. We don't we don't talk about you know, things like that private things we don't people come in and asking personal questions. It's just not the don't the done thing at all. But we had about Child and Family assessment done. And you know, they were able to offer and provide us with respite care for Amber. So she goes to a childcare setting after school a couple of days a week. And during the summer holidays, it means that I have childcare, which you know, she can't access a typical or mainstream childcare setting. So it means that I have access to that childcare. And that childcare then allows or affords me the ability to work or spend time with Skye or spend time doing something for myself, I have been known to put them both into the childcare and just take myself off for the few hours. Just to have some time for myself. And that might again, that might be me just sitting quietly, somewhere with a cup of coffee and drinking that really mindfully, it might be me getting my Pilates mat out and doing some Pilates and moving my body. I also found that that really helps I didn't get on with the 5k By the way, I don't do that anymore. That was

Rina Teslica 57:38

You're my kind of woman, I can't see myself runninf.

Lauren Fenton 57:42

So I'm a runner. And I haven't been I haven't been able to run for three months because of my bag, which is the longest I haven't run for a long, long time. And the mental toll that has taken on me is it's horrible. It's really horrible. So I'm learning to like, enjoy walking until I can run again. But yeah, movement, I think is so key. But I think as well it's easy to put pressure on ourselves, even in the wellness game to go, Oh, I'm gonna do pilates and I'm gonna be all mindful. And I'm gonna do this and I'm gonna do that when actually, you know some of the things that you've mentioned, right, at the start drink bit more water in you, they have 5-10 minutes where you don't have your phone next to you or, you know, it can be really simple things I like I love some of those suggestions that you made and I'm gonna look at that book with the some of those hacks because it's just it is it is just small things where you can that will make you feel that you're better able to parent better able to look after yourself and better able to look at everyone around you. If it's not too big a question, can I just ask about Amber's transition into secondary school? And obviously, that comes with a whole kind of new phase. I have a daughter similar age to, to Amber who's neurotypical. But that secondary school phase is a big, big change. How has that been? And has that stirred up some of the emotions around kind of going into those default mechanisms of cope cope cope. How has it been for you?

Nicole Stephens 59:15

I feel her transition is I feel better equipped this time around. So when she was starting primary school, it was chest like a completely you know, she attended a mainstream nursery. So going into a special school, stared at all of these sort of emotional feelings about her not attended. You know, again, it's these things that you think about when you're you're about to have a child or having a child that they're going to go to this school and dar dar dar. Also meant I didn't know anybody that was going to the special primary school that she was going into. It was complete. It was an unknown, whereas with high school, it's been an easier transition I would say so she's going into a high school with loads of the kids will have primary school So she's already familiar with with, she has a lot of friends that are going up already.

I think in terms of the transition, Amber probably handled it way better than me. Already over the summer, I just knew that there were certain things that as a local authority, were going to be withdrawn from us. And we lost things like transport, which just logistically made things easier to get Amber to to the school, which she went to before, which was further away from our home also meant that my husband could go to get to work on time, I could get to work on time, I could get Skye to school on time, that all went out the window, we just had to like, rethink about how we do that logistically. And old Nicole would have fallen back into like panic mode, okay, you know, got to push, push, push. But instead, you know, I asked, I spoke to work and I said, Look, this is my situation. What, how are you going to, you know, what can we do? And my manager was wonderful and went right. What we need to do to support you is to dur dur dur, can we make it more flexible? Do you need to work from home on the day that you need to pick up Amber? It just, I was just able on the corner, just power through it when it said anything to anybody, I just tried to get on with it. But you know, being able to ask for help. Accept the help and be flexible around that gestures meant that that transition has been easier. So far, I am getting a little bit of I call it preteen attitude from Amber though.

Lauren Fenton 1:01:29

I love a bit of that though. I mean, I don't know that for my own daughter. Yeah, that's hard. It's hard to handle

Nicole Stephens 1:01:37

100%. Like I said before her she has got a lot of Speech Communication. difficulties, I say speech difficulties. Her communication is fine. She likes her. Keys. Yeah, so she let us know, when she has an issue with things. Now a lot of things are nos, they are big nos. So that that kind of next level of parenting and what that will bring in terms of puberty and adolescence, Adolescence is again, it's an unknown, but I just feel like, whatever. Besides really, like, dreamy, this is the dream, whatever life is gonna throw at me now like, I just feel like today, I can sit here and say, I can just feel like I know that I have got things in my toolkit that I can draw on, I'm not going to default on into caffeine and the wine anymore. Even though I do still drink the wine and the caffeine, it's just not in the same copious amounts I was before I can choose, I know that I can cope I know that I can manage and when I when I can't, and when it is really hard. Like I can say, hey, this is really hard, I'm going to need some help. And as a family, we're also getting really good at recognising that in each other. So you know by if I'm feeling really overwhelmed, because you know, there's the dishes are piling up the laundry piling up, I've had to work I've had to cook meals. And then it just feels like the world. Nobody wants to go to sleep at bedtime. So I can sit on the sofa and do nothing. My husband gets in at like 8/8.30 and then some you know, sometimes he's really good at he'll go to go to like Skye. I think Mummy needs a hug.

Lauren Fenton 1:03:22

Oh, sweet.

Nicole Stephens 1:03:24

It's really nice then because last night again, it was it was it was one of these moments. And Skye went to me. I think you need a hug. Do you need a hug mommy? And I was like, Yeah, actually I do. And that, you know, she seen her dad do that. And she now you know, he's just a really nice, a really nice thing and you know, not to go back to like wellbeing and self care, like touching and human touch is one of those things that actually helps to raise our oxytocin levels. And they have really, really positive benefits on our mood and how we feel but actually also have got really, really positive physical benefits as well.

Lauren Fenton 1:04:10

Beautiful. Teaching them all that compassion and it sounds like you're raising two beautiful kids who are going to be as sorted as you in terms of when when one needs a hug and to look after oneself, but you know, they know what to do. Oh, that's a lovely way to end it. So thank you so much Nicole for coming on the fucking normal. It's I feel like I've learned a lot from you. And I've already started reading Penny Wincer's book since you mentioned it when we spoke recently so lovely to chat.

Rina Teslica 1:04:41

A beautiful conversation and you've been so eye opening and has given us some really good advice. So thank you greatly appreciate it. But to finish, would you mind telling us your fucking normal?

Nicole Stephens 1:04:55

So thank you for having me. It's been lovely. I've enjoyed it and My fucking normal is the fact that I drop the balls all the time now. In terms of the juggling, I'm okay with that. And my because I'm being greedy my second fucking normal is taking time out for myself and drawing on my self care practices that is fucking normal for me now whereas before it just it wasn't.

Rina Teslica 1:05:26

I love that. Oh,

Lauren Fenton 1:05:29

yay. Amazing.

Rina Teslica 1:05:31

Oh, it was so lovely to talk to you. Oh my god, I could talk to you like for hours. Thank you.

Lauren Fenton 1:05:39

Thank you so much for listening to the fucking normal podcast. We love making this podcast. Yes, we do. We're 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 1:06:00

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 fkingnormal_podcast. You can get all the links and more information in the show notes below.

Lauren Fenton 1:06:23

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

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