Episode 162: Jo-Ann D’Costa-Manuel

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1:46Hello, I'm Sophia Lisbexter, and welcome to Spinning Plates, the podcast where I speak to busy working women who also happen to be mothers about how they make it work. I'm a singer and I've released seven albums in between having my five sons aged 16 months to 16 years, so I spin a few plates myself. Being a mother can be the most amazing thing, but it can also be hard to find time for yourself and your own ambitions. I want to be a bit nosy and see how other people balance everything. Welcome to Spinning Plates. Morning. It's Sunday morning, Sunday the 21st of September. I'm actually a bit tense because my brother who I'm starting a tour with tomorrow he's running the Berlin Marathon right now he's running so fast and there's this really clever app and I'm watching his number and it's honestly making me really nervous because he's on target to finish this is his second marathon he did the Copenhagen one before He ran it in three, I think it was either three hours, six minutes or eight minutes.

2:56No, it was six, three hours, six. I'm going to say that. He's now on target to finish Berlin at three hours and two minutes if he keeps up his pace. But he's still got like another hour and a bit to go. Anyway, it's just making me really tense. But also excited because he's doing really, really well. I hope you're well. thank you so much to all of you who i've met sung for signed things for done anything for uh or has in any way supported anything i've been doing with perry manor pop my album that was released just over a week ago what an incredible 10 days i've had doing all the promotion for it from in stores to the signings to um the beautiful little independent record shops I've visited to the largest HMV in Europe to performing on QVC, Women's Hour, Chat, The One Show, Lorraine.

3:59It's been so nice. And yeah, just thank you so, so much. It was a really packed schedule, but everybody gave me just the tonic that I needed to feel really pepped and excited and happy every single day. And I really do mean that. I've been smiling my way through it because it's been so nice and now the album charted number five which is absolutely awesome and I'm super proud so thank you very much but my achievements they do absolutely pale in comparison to my gorgeous guest this week Joanne de Costa Manuel she's a really incredible woman and incredible company and if you are at all aware of things like um if you there was actually a time in supermarkets called the quiet hour which helps people with any sort of sensory challenges but she was absolutely motivated by her autistic son and so now supermarkets up and down the country and actually even in other countries it's gone as far as australia have a quiet hour in their supermarket for anybody who appreciates being able to shop in what can be a very overstimulating environment in a way that will just take things a lot calmer for them.

5:20She's also worked alongside airlines and persuaded airlines to recognise any lanyard with a sunflower is a symbol that a family member or a member of that group has got a hidden disability. So that airlines can be more understanding and more supportive to people who have extra needs and find travelling like that challenging. And she will keep going. She works with a philanthropist called John Caldwell and helps him raise money for children and youth projects. And I think her horizon is very, very broad because I think she just sees lots of places she wants to get involved and help. And as I said, all motivated by her son.

5:59She's got two children. She has a daughter who's 19. And when we spoke, she was in Ayurveda having a great time with her mates. And she has a 16-year-old son. and I think when he was little and she first started to get to grips with his diagnosis and with mothering him and what made him you know what she needed to find life easier I think she just felt completely overwhelmed and that the whole world is just set up in such a straightforward way for people who are neurotypical and neurodiversity overall we've obviously got much better at dealing with and including within the fabric of everyday life but it really is pioneers like Joanne Tocosta-Emmanuel who have really spearheaded what these things are about and conversation and just making it part of everyday language that we're all aware they're all different and some of us find some things that we would regard as you know some of your neurotypical you'd regard it as something quite straightforward like going to the supermarket can present someone who's neuroatypical with all manner of stresses and challenges that actually don't need to be there in order for them to go and get their supermarket stuff and go home again.

7:10So it's incredible. But also what's incredible is, as you can probably imagine, and you'll hear, excuse me, from Joanne's talking, she's just incredibly energetic and focused and clear-minded and engaging. So when she speaks to you, you know, she's very good at getting her message across and communicating, as you will hear, but still very open and warm and smiley and all the good stuff. So yes, what an absolute joy. I will leave you with the conversation I have with Joanne. We recorded it just before the summer holidays, which was a really nice time to chat. And for what it's worth, I hope her daughter had a wicked time in Ironapa.

7:48All right, I'll see you on the other side. And thank you for coming to find me here again.

7:59johan it's so nice to meet you thank you so much for coming from sunny sussex to west london today um why don't we start with today what's how was your day today so far you've got both your both your kids living at home both of them yes so my daughter who's 19 um so we were in america we got back about 10 days ago and then she hopped on a plane to go to Ayanappa she kept saying I'm going away with my friends and I didn't know where she was going and then she disclosed the day before and I was like you're going to Ayanappa and she actually texted me yesterday and went mum it's overwhelming like it's crazy out here I said but you have gone to Ayanappa with the girls so it's a whole new phase now is that where she is right now?

8:43yeah has she sent you any pictures? Yeah, she has actually. I'm such a, I've always been, Sophie's such a protective mum, and I'm trying to learn to just let go a little bit, but it's so hard. So she sent me a picture. I think her friend was on the back of one of those big, you know, those... Oh, like a sort of moped type thing. Yeah. And I was like, be safe, tighten your helmet, like all the list of things. She's like, mum, chill, I'm fine. So yeah, she's doing that. And your boy has just finished his GCSEs, you said. Yeah, he has, similar to yours. So it's that long summer, isn't it? We're just trying to fill it with lots of different things and preparing for his next stage.

9:25Yes, exactly. And during the course of this podcast, I've spoken to some women where they are on a specific path and they have their babies and they just kind of scoop them up and almost put them on their back and keep going on that path. and then other people where their children have totally dictated what happens next and it's been a big life change and obviously having raising a family is a life change no matter what but when we rolled back so they're now 19 and 16 but what was going on when you first had your babies what were you working on then I honestly all I ever really wanted to do was be a mum like that was I did some amazing things.

10:07I worked in television and radio and met incredible people. And I've always felt like I've had access to things that other people haven't. And it's been such an amazing life in one way. And yet it's the basic, humble, simple things that light me up. And actually, having children was something that all I've really wanted to do was stay home. And although I'm fantasizing it here, it's like making cookies and going to the farm and doing all those things that really excited me and so life really stripped back when I had the children Sophie and I and I absolutely loved it I did you know as you grow older and you grow wiser and you look back at things and people say you know it should be life should be a balance with regards to your partner with regards to your hobby your friends I know that I very much put everything into the children and they became my almost my whole life um and I think now Sophie as they've got older even my son with his special needs they both don't need me as much they both are doing their own thing and I've definitely had moments where I felt um maybe a bit lonely and a little bit like not needed and I'm finding my place again um and is that something quite a recent thing I'd say maybe the last couple of years definitely um yeah so I've definitely embraced it I can't look back and go oh I wish I spent more time with them because now it's all changed I just I'm so happy for them growing and developing into young adults but as a mother it's hard as well it's hard to let go a little bit when you just want that last cuddle or you just want to drop them somewhere when they're happy to walk when you're finding every excuse of why you should take them so you get 10 minutes in the car so it's kind of unexpectedly made me feel a bit emotional actually because I think I feel like I'm still quite head in the sand about that future that's waiting for me one day I don't think I've really explored a lot of those emotions but when you put it that way I'm like oh yeah that will definitely be one day and I think I think if I'm honest I've kind of fooled myself that I'm such a busy person that them growing up would just be like another thing that happens a new chapter but the reality is like you I absolutely love what family life is about and how it anchors me and what it gives me and so I think one day yeah that I'll be phoning you up like Joanne how do I navigate this bit please um yeah but so when you had your your children so and forgive me if I'm putting it in a really oversimplified term but just from reading about um your experiences it would seem that for the first maybe five years of motherhood everything was following a fairly typical trajectory with your kids so when your daughter was three you have your little boy and then he gets to around two and that's when you start realizing you sort of start to fall into this outside of the typical of what happens is that is that a fair way of looking at it or do you just have now it's been you're so by space you're so far down the line with your children and where they're at now that it's hard to probably think back to those days I remember it really clearly Sophie um yeah no that like the first three years with Sienna absolutely amazing um and then yeah my my son was born and it felt complete one of each and I told you when we spoke before this I'd always had the number five like I've always wanted five children and I'm like that's it that's my number and um obviously after my son so I had two very very difficult births as you can see I'm quite tiny and um I remember after I'd given birth to my son I had an emergency c-section and she she came to me and she said your two babies are miracles because you are not designed for childbirth um and I just remember feeling so happy not thinking I'm not going to have the other three I wanted but thinking god you're saying that I've got two like I've got these two little miracles in the world and they are yeah she's right no absolutely and so when my son came along and but that then um my son was actually hitting his milestones a lot earlier than my daughter was um and I think with second child I'm a second child you're more out there a bit more boisterous and as a mother as well you let them do more things so he was doing really well and then I think I mentioned to you he uh he regressed and over about a five week period kind of lost a lot of his skills five weeks is that is cruel as an experience you to go through to see things shifting like that the only way I can really explain it is you know sometimes when someone has an accident and you think god one minute they were like this and the next minute you're told they're not going to be able to do this this this and this it was very traumatic I was going to say it's traumatic and it's still I it doesn't matter how many times I talk about it it still takes me back to a place of being really no I'm right there with you Joanne I can I mean I can't even begin to imagine how hard that must have been but also I suppose you've got your your instincts sorry I always catch I always catch you've got your instinct for noticing things and then people telling you oh it's very little it's fine and sometimes you just know in your gut that maybe you're not in that category actually and from in the conversations I've had with other parents who've maybe experienced similar the limbo as well between realizing something that's not quite where it was and actually getting a diagnosis is just an excruciatingly traumatic and lonely experience yeah just looking for your people that can support you and give you back your optimism because that's what we're so trained to do we want to it's all about those milestones it's all about the tomorrows and imagine when they're doing this and oh no they're doing that it's the parlance of new parenthood as well isn't it oh gosh absolutely but i really do salute mums because they have got this maternal instinct so people I just think they just spot things or they just know or they just have that feeling and you know my advice has always been if you have that move with that feeling because early intervention is such a game changer that act on it you know even if you've got other friends or family or partner that's thinking you'll you know chill out a little bit if you really feel it just move on it because the difference it makes to get diagnosed or start intervention early is is just so crucial um so yeah and so for your your sort of chronology within that sort of five weeks you and your son's dad are noticing these changes and how long was it before you received a diagnosis um so we didn't like with the nhs we were out in australia at the time like the nhs you're then put on a wait list and that wait list can take three four five years to actually be seen by multidisciplinary team um and what i'd learned about the infant brain is that the sooner they have intervention you know you have the chance of creating new neural pathways and really creating a different outcome every child obviously is very very different so we did it privately so was that in Australia?

17:42I didn't realise you were in Australia at the time was that where you were living at the time? yeah we went for a little stint over there and so he was seen quite quickly but I think the blessing in disguise Sophie as well was that because he had regressed it wasn't like a wait and see oh he hasn't hit a milestone let's see what happens in six months time come back it was he had skills he's lost them this is it's a term called regressive autism where you lose skills so I think that was the blessing in disguise that he then got diagnosed early and we started intervention immediately. And autism is something that I was reading up a bit that it's at least one in a hundred people, but they think it might be closer to one in 36.

18:24And so this is a fast growing awareness, research information. But back, where are we, 14 years ago, how much did you know about autism? them nothing I'd heard the term and I sort of knew that some children are late hitting certain milestones that was it I literally didn't know anything about it I was such a rookie um and I just Dr Google just became my best friend and I was literally I would put the kids to sleep and I'd literally stay up for hours and hours and end on just researching and reading and reading and calling and we ended up seeing a doc i read a book um by do you know jenny mccarthy i don't think i do um so she's she's an actress in america oh yes i don't know she's going out with jim carrey i thought of that person but i thought you must mean like a doctor or something no no uh she was she was very much on the sort of medical side of things but anyway she talked about this great doctor so i was there emailing this doctor and then setting up calls.

19:26Her doctor became my doctor and it was like I just pulled every stop out to try and just work with the best people to support. But in the day, I'd kind of suppress all my feelings and then I find at night is when I would work but also cry a lot and break down and just think I felt like I was in a different world, like a bubble, like one earth is going on, like this is someone else's life. So yeah, it was a really tough time. It was a tough time for the family, a tough time for the children. But certainly, you know, one day when my final days are up and I look back, Sophie, I just will never forget the time and the feelings that I experienced, feelings that I didn't even know existed maybe at that time.

20:17But what I also felt, I've often talked about a time where I had a really bad moment with something with my son and I went and was crying, splashing my face with water and I remember looking at myself in the mirror thinking, who the hell is staring back at me? I have lost myself and my family's breaking down and I'm struggling with the kids and who am I? I am meant to glue our family together and because I'm breaking, we're all breaking and I don't know what happened in that moment, Sophie, but something made me just shift and go, like no more like now it changes like you're not a victim to this story you get up you rise you roll your shoulders back and you go and kick ass basically and make life work for you not against you and that's a very pivotal moment in my life because I started to just shift the way I think I looked at myself more than anything I stopped feeling felt sorry for myself and just thought no well I suppose well my I'm sort of seeing this image of like almost like there's like a in case of emergency break glass and that moment was like break glass I get that last canister of like super energy that I need okay now's the time you know to like find that rocket pack of something just to shift the narrative and your experience it's it's so tough though because we've got such a hardwired desire as well to to fix things to be doing stuff and then sometimes when you're in a state where your family need you but you haven't got the answers you don't know which way's up you can have this feeling like you're just spinning around like a spinning top like all this energy is just going out and then you're like I'm not even getting anywhere um and you've got other children like I had my daughter as well so it's like you can't put all your focus in one area because that little person needs you as well and they give you great statistics like 88 of marriages end in the first year and and then suddenly you you're you're thinking actually every given moment i'm concentrating on this and actually we're not talking like we used to anymore and he's coping differently to how i was and you can see how it can have a real knock-on effect and how you have to really take and i think women i think you'll agree with this sophie even like i mean i can't you just look so flipping amazing i cannot believe you've had five children but um you know those moments when little one you've just given birth and they're crying and they're crying and crying and your body is literally so exhausted but you still have the energy to just get up and keep going for your child yeah you haven't got the there is no alternative we just we just pull on those reserves all the time because there are our our children and I think that is true but I suppose I'm also just I mean that was a lovely compliment my way but I'm sitting here thinking wow because I already know you know the end of the story up to this point obviously what's happening is still in the present tense but you know all the things that you have achieved but you know how you have shaped and reframed things for so many people um living alongside autism whether it be their diagnosis a family member a friend firstly there's awareness but also inclusivity and keeping doors open and so I know that that's what the result was but I do really appreciate you taking me back into that darkness because um I mean I just I can't even begin to imagine that sort of free fall and obviously that you're talking about your immediate family but then there's also the friends and family and their lack of knowledge about what's going on and what that means.

24:01And, you know, sometimes dialogue and language can leave you so redundant when you're dealing with a set of situations that are not familiar to you and do not resonate directly. You know, we have such a casual shorthand of how we talk about family and futures. And I do think it can be so, so lonely when you are not in those conversations or, you know, they'll get a group of parents talking and then you know that you can't contribute in the same way. So with everything, would it be okay for you to talk to me a little bit about how your son's autism presents in your family dynamic just so I can have an understanding of where it might be different if that's what you're parenting?

24:46Gosh, the smallest thing, Sophie. So, you know, pushing the pram and going into... The minute you entered a shop, he would start kicking and screaming and not wanting to go. We took him to the doctors. One of us had to cover his eyes and the other had to cover his ears because he didn't want to look at people and he didn't want to hear the sounds. And he couldn't eat so many different types of food. And so it'd be really difficult to take him to places. And I'm sorry to make it sound a bit doom and gloom, but it actually just was. And then nobody understands what's going on. and they think, oh, why is he crying?

25:21Like, just shut him up. Or, you know, why is he on the floor kicking and screaming? Like, can't you control your child? And even if they're not thinking that, you feel like they're thinking that as well. Yeah, but there's definitely been a shift since he got diagnosed till now about awareness. You can see it, you can feel it, being inclusive. Back then, and we're not talking hundreds of years ago, but even talking just 14 years ago people did look did stare people did give you a look like control your child please yeah um and we couldn't um i'm really proud of actually the steps it's made i mean it's not perfect but there is definitely a change in that particular area even now walking through the airport i was um part of the team that looked after putting together the i don't know if you've seen these green lanyards with sunflowers on but they highlight like hidden disabilities.

26:16And even now we were on holiday last week and just wearing it and I just feel a little bit like, oh, this is, like you go to any country and people don't even have to ask you, but they see it and they think we need a little bit of extra care here. So, yeah. Well, I think that's funny. Producer Claire and I were talking about the sunflower just before you arrived actually. But I think also I had my first baby and my second baby, not entirely dissimilar times to you. So my eldest is 21, so a little bit older. And then Kit, my second, is the same age as your son. And I think that we've also seen a shift in parenting as well because when I had my first and I think my second, it was still about the naughty step and about still quite, it was the, what was she called, that nanny?

27:01Nanny, oh yeah. Super nanny. Yeah, I could see it. So it was that thing of being really quite firm around the edges of expectation of behaviour, whereas now we navigate emotions and we don't put shame on people for actually falling outside the edges of that. And I think the whole nature of parenting has really shifted as well, not to mention awareness of special needs, hidden disability, all the conversations that are going on there. But I think you can put yourself in the equation as one of the people that can be credited as part of that wave because from this, you know, stone dropped into the middle of your reality at that time, all these concentric circles have come out that have affected and supported so many families.

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30:14So let's talk about some of the things that you have spearheaded. I mean, it's so awesome, John, honestly. Oh, bless you. So things like the supermarkets and the quiet time in supermarkets. so let's go back to how that started for you and I think it came out of feeling initially on you know Dr Google how do we go shopping as a family in a supermarket how do we do these things and people just going well you sort of don't do that anymore actually you're just going to have it all online absolutely that spot on but again it was all born out of the fact that we literally couldn't go and do a shop as a family and when we tried to do it and think no we're going to break this and we're going to um it just didn't work out and he would scream and then he'd want to come out and then he would stop taking things off the shelves and then he'd lie on the floor and he would it was just so difficult and when people kept saying just do online I was like but how will he ever he needs to do this one day and I know we we've only like spoken a couple of times but I'm such a crybaby so just excuse me if I get emotional but even like now Sophie um you know I just I'll drop him to Tesco's for example or Waitrose or wherever it might be and I'll say right I'll be back in 45 minutes and he just does the whole shop and he knows I'm really specific about certain organic foods certain certain brands and he just knows what what we want what we need and I guess I get it's really happy tears because I'm like that's moving he can do this now that was always the aim was how can you empower um a young like just just don't write them off and say that they can't do it or put all these different things like let's integrate them and let's help them and like the staff they're like everybody's there to now support and that just really wasn't there so putting this um quiet hour in place came from the fact that he couldn't cope and we'd have to go down the same aisle and it was and so they were just little steps that I did that I wanted to try and make a small difference and I was just this little mum rocking up to our local Tesco and we put a flyer out that just went viral because suddenly everybody thought this was in every Tesco which I'm really proud to say is in every Tesco, Sainsbury's, Waitrose, you name it it's everywhere now to think it's just this little mum scribbling down these ideas.

32:33Come on that is incredible that must still now just be like something nationwide like that actually not just here other countries too yeah Australia in fact yeah so yeah it all held great meaning to me and um I did similar things with airlines but something in place and again that was born out of a horrific air journey and not just the passengers but the crew and where you just think nobody no one gets this how are we how are we in this day and age which it's just like this and people are just coping um so I do feel really proud but I will say um I am a woman of faith and like my, since I was very young, it's been a big part of my life.

33:15And I think when everything kind of got dark for me, it could have gone two ways where I could have gone, oh God, I don't believe, like why none of this would happen if there was a God, like who's this God? I was raised Catholic. But I became very, it became very strong, very important to me to see me through some really dark moments. and I'd always speak to God like my friend. And I remember it wasn't a bargain, but I'd be like, just look, just help me. And I promise I'll spend every day of my life trying to help others, but I need you right now to help me and have my back. And I feel like a lot of the things that I've done, it sounds amazing and they have been amazing, Sophie, but I feel like it's also been a bit of healing for me because by doing that and helping more and more children, and it's mended a bit of my heart that was absolutely shattered at a time when all this happened.

34:12Well, I can actually hear that when you're talking. And I'm glad you spoke about your faith because I was listening to you talk in another interview about that. And I was impressed to hear as well that it wasn't a case of ever asking for change, but rather more just an understanding of what the right path was, where to head, to give, as you say, this healing, but also this embrace of all these other people and their experiences. And I think, you know, that's like, that's something that happens, I think, a little bit where, you know, you raise a child, you immediately, any other story, any other family story, when you're engaging with it, it becomes your story.

34:58you take on don't you picture yourself if that was happening to you so I think you open yourself up to all of that but also you know how incredible is the idea of yes the supermarket is a brilliant example of it where you started out with a need that was just about your your son and his options and your family but then it becomes about so many other people's families and how healing is to find community I think I mean the church is brilliant for that and it's what it represents but also So if you are dealing with something challenging and you do feel so alone, I mean, look, when we when you started and you didn't even know what autism meant to being part of something that means you know what it means to all those other families.

35:40And you picture those sons, those daughters, those families walking those aisles, that that independence, that person has gained from that. that's I think that's why it's so special because it's it's generous but it also sums up that strength you can find to fight fight for your your kids opportunities um but I isn't because you clearly now know so much about the way the mind works and you've spoken about neural pathways but if you are someone that's so committed to you know motherhood and uh to opportunities how do you navigate um feeling like you're i don't i suppose i just i was imagining that if it was me i would feel so much pressure if i knew that the things i was introducing my kid to could make an active change in them how do you like give yourself permission to also just be not doing things all the time that are designed to have that outcome does that make sense yeah no I definitely make sense I think I've become a lot better at that now part of that is fatigue um yes I haven't really spoken too much about the exhaustion that must come along with yeah you just it's you just cannot keep it up to the to the the extent and the detail that it was and also it made me almost not a ball of nerves but I was on the lookout and watch for everything can't do this we can't do that we can't eat that we have to buy it from here we and I had to tell myself chill out now because you're literally you're trying to save and fix everything but you're breaking a little bit and it's definitely been good for my nervous system to just chill a little bit and know when to go and I'm just I'm gonna let that go I've had to learn that safe like I've had to train myself to just chill out a bit yeah and others around you as well probably saying you know everybody would always be like like now my daughter's old enough she's like mum stop right this is this is the bit that's not good for you because I'll just go on and on so I've definitely learned learned that but it's been it's been difficult to undo something that you've done for for such a long time and little things can happen sometimes Sophie and they'll trigger like anxiety because it takes me to a place where I'm like this might happen or I've stopped thinking about all the things that could go wrong if I don't do stuff and just thinking okay well what could go right like yeah yeah like just and get actually i think you know that sometimes when we experience something traumatic there is this sort of fight or flight adrenaline that can accompany that so i guess it's about channeling that but also giving yourself ways to calm yourself and look after yourself because ultimately you want to be the version of yourself that functions all the days you know yeah um and I haven't been overly proud of myself when I look at myself in the mirror if I'm honest um like I've done all these great things to help other people my son's doing well and family but when I look at myself I can see a lot of self-neglect and I'm not talking about things that you post on Instagram and use a filter and everyone thinks you're living this great life and doing great things but I just it's only in the last few years I've really been working on myself a little bit and just realizing that I put myself on hold and was always bottom off the list which was one of the reasons I wanted to do this other podcast which was and it was like I need time to now just spend time on who am I as a woman now you know not long before I hit the big 5-0 like who am I now and what are my values what do I like what I don't like what what are my limits with things and what are my boundaries and I've had to really start working on myself and I've realized that I started that journey at a point where there was a lot of neglect for myself and I don't I wouldn't recommend that to anybody and And I think even when you can be a beautiful mother and you can do the things you need to do, but still be a bit more balanced, I don't think I was.

39:51Then again, when you're talking, I'm thinking that sometimes I feel like if you're in the midst of things, the only examples of the trope almost of a dedicated mother is that person putting themselves right at the bottom. I don't think it's really been culturally built in, really, that we can prioritise and factor that in along the way. It's like that bit where you've got the new baby and you're sort of almost competing for who's the most hired. It's sort of built in that, like, I'm rinsed and I think that's where I'm supposed to be, but, God, it's awful, you know? But it's that whole oxygen mask thing as well.

40:30It makes sense to me now. Yes. Like, put yours on first and then you're better for everyone else. That's true. That's a great analogy, actually. Yeah. And I suppose also it's about the excitement of this bit of our lives, right? I mean, I think I'm 46. I think we're pretty much the age, right? So we're both approaching this bit where you're like, okay, what is the big theme here? What do I want to explore? What seeds have shot up that are now in bloom and I want to keep that growing? What do I need to maybe prune back a bit? It's that sort of feeling, really. um you mentioned your daughter how how has it been um such an obvious question but I wanted to ask anyway navigating you know everybody is obviously affected and defined by the family you find yourself part of but for her there must have been times where you were thinking oh how do I spread myself and make sure she's getting her needs met as well I mean I know the proof's in the pudding she's messaging you from my lapper it's all good but how have you as a mum how have you navigated that feeling um it's it's it was really tough at the beginning because i was very conscious of she was this four four-year-old little girl and life has her brother had suddenly changed and it was very tough for her and you know anyone that's listening to this sophie actually that might be going through a similar journey i would say really really focus on your other children and the siblings because they do grow up in a different home than a typical family especially if the child is more on the severe end and um it's been tough for her um and I think there's some things there that will will will always be there due to those early years um but I have a really strong relationship with her and we can talk about anything can we you know only last week we were talking about something and we were both shedding a little tear together so we're very open about our feelings and we can talk about things but it it has been a journey and I think siblings are the unsung heroes in a lot of families and a lot is put on their little plates when they're maybe not even ready and they have to grow up in my everyone used to always comment my daughter always seemed a lot older than her age and I think it's because she had to step up a lot quicker.

42:47She's such a beautiful girl and, yeah, I just, I love her to bits. She's like a real little mini-me. I light up because everyone always thinks we're sisters. They clearly know we're not. And I was like, darling, can you be a bit more excited about this? She's like, mum, there's a 30-year age gap. Like, I am happy, but it's not as big a compliment. maybe they just think i look really old but i can see it from my perspective i've seen pictures of you guys together you really do both look like sister like it's something people say but i can actually see why they say to you guys bless you what about you though how do you like spread yourself over five children like that i i struggle sometimes with just two trying to give them both my love and i love you both equally and if i do for you i'm doing it for you but you've got five save sophie and also as they get older they talk a lot more about fairness as well so that's that can be quite tricky and yeah sometimes i do feel like oh golly i really need some quality time with that one because we haven't done anything just the two of us for a little minute i try and have little things we get up to that are just for the me and that that son yeah um but yeah it definitely sometimes can feel like you have spread yourself quite then and And I hope when they're older that their memory of it is that the thing that's good is that sometimes I can't physically be across things as much as I would like.

44:13So they have to get good at finding other people in the family. And I think we can sometimes put ourselves in such a central role. But actually, there are lots of other people around them that they can turn to for advice or be the one that was that smiling face in the audience for assembly or something. so I think it makes family broader and those connections strong but yeah selfishly I want to be doing all this stuff too so I think I've got the things that matter to me like I love doing school in the morning I love doing bedtime so as long as I've got my balance of that I feel like kind of topped up but it is tricky and also like my eldest sometimes I'll be like should I be messaging you more and I've been making you know I'll be seeing each other enough I guess that's It's just the ongoing thing, isn't it?

44:59That is the ongoing thing. I think carving out, and I think we are aligned in that, where I do carve out time with just them on their own. Yes. We have our own time together, and I think... It's pretty vital, I think. I think that's really, if you can do that, carve out time to really make that happen. Yeah. Obviously, it can't be on a weekly basis, but when you can do it, I think it's really crucial. I agree with you. And actually, I did see a really lovely quote, because I was reading an interview with your daughter, who sounds adorable, and is she still thinking about teaching? and kindness in schools is that still her yeah she's very empathetic very loving very caring to others but she has got a different side to her to me where she also knows a boundary where um which I actually really admire in her because it's the opposite for me I'm just like floodgates open and I'll just and she's like there is a moment where you need to to have self-care you need to know when to cut off and so she's quite uh she's actually taught me quite a bit she sometimes tell you that yeah well she also spoke about she said um she was talking about her childhood um and she said my mum and dad most definitely made sure that i still had a beautiful childhood and rightly so i can only ever remember the good times only now do i realize that despite all the stress and sorrow they were going through they still fought for me how beautiful is that i knew i'd make you cry you're terrible weeping all the time um can we talk a bit about your obe please oh i tried to just like no that was actually i i thought about actually whether i should accept it or not i thought you said whether i should wear it today yeah it wouldn't match um because like i said as i said i was a woman of faith and i did it i didn't do it forever an accolade an award or anything so i did have to actually stop and think do I want this does it fit with who I am um so I don't I don't like to shout out about it I'm a little bit more undercover with it but I obviously I'm very um well that's what you can take from it is a recognition of all of that um invisible fight you know all the times when it probably just felt like you and maybe you and your husband and those conversations and the you know the things that went viral and finding the people I think I think pouring that positivity can only surely lift you up and make you feel like uh I suppose it ties in with the faith as well like there was all it was all leading to things yeah no it meant something it's good to be reminded it's okay to be reminded of that thing and I think I think one of the big reasons for me Sophie was a legacy piece like when I'm not here and my there is my son and daughter and sometimes you can lean on strength from from maybe stuff that mum did or dad did or we did as a family.

47:44But it was very special. It's quite personal. Like I said, I went to an event and they put Joanne de Costa Manuel OBE and I wanted to cringe. I really did. I thought, I can't wear this badge and walk around. Like, I want everyone to know I've got an OBE. I'm a bit like that. I get that. I can see that. I mean, actually, there's a guy I met, I don't know him very well, and he signed off a WhatsApp note with his name and then OBE. oh that means you had to type it in each time come on so there's don't worry there's levels to this we um it's i'll just touch on this quickly i was out the weekend at a party with my parents as well and um this couple approached me and they just started talking to me they just thought i looked like someone they knew and so they got into a conversation and i happened to i happened to be with my dad and it must have been within 15 seconds of a conversation i was talking to the wife and the the husband was talking to my dad that he came over to his wife and he said do you know she's got an OBE and I looked at my dad like because he knows like what I'm like and he's like my darling I'm just always proud of you I'm like but dad you know I don't like it and also it wasn't even like a minute in New City so I think people around me are proud um and that's always really lovely when you know your parents are proud of you as well yeah definitely and did you all go how many people did you have with you so you can you can only so it's you plus three and okay obviously it was my husband and my two children like that that would be he wasn't mine it was all of ours for different reasons so yeah it was lovely very very special that is lovely and um i wanted to talk to you as well about the charities you're now involved with yeah so when did you start because it's cold world children and cold world youth that you work alongside is that right yeah i'm so impressed with you so i know so much yeah yeah that's true So they're the two charities that John Caldwell set up.

49:38And one obviously looks after disabled children from low-income families. That can be anything from spinal operations to specialist wheelchairs to autism diagnosis. And then the other one is Caldwell Youth, where we look at mentoring young people. We're looking at things like knife crime, modern-day slavery, things that are really affecting our generation and our landscape of society. and we've only, Caldwell Youth's only been two years, Caldwell Children's, we've just had our 25th anniversary, but even in the two years of Caldwell Youth, I think there's been like an 88 % reduction in re-offending.

50:13So it's really, it's not just about the young person, but also the knock-on effect on society, victims and everything else. And then Caldwell Children, it's about really giving each child the best quality and chance in life as possible. So you can see this kind of - with this charity brilliant incentives yeah you need to come in we i know you've um you see you have you know our headline in monaco and you perform for us and i didn't get a chance to meet you and then again actually i was at the baftas about two years later john couldn't go unfortunately so unfortunately i had to rock up for him and i remember you were performing that year because murder on the dance floor had just kind of made it again yeah it was last year because i remember I stopped and I had a very brief conversation.

50:59I've only been once, I can pinpoint it quite easily. But even then I felt really proud, like, oh gosh, she's like back there. Like, I was really happy for you and we hadn't met. So it feels really lovely to be sitting in your house now and just chilling and talking about stuff that is important and aligned with us. Also, I'm just really impressed with the nature of John Caldwell's charities because I think sometimes when people have been very successful in business, the thing about like you know trying to help children is that it's kind of endless how far you can go with all the kids that need support so I think it's brilliant that he's actually put so much into that and you know what I mean it's like once you open your heart to that it's kind of it doesn't really stop it's like you have to just keep scooping more and more people that need that support and actually you mentioned about money the financial ramifications of a diagnosis as well is something we haven't really touched on, but it's something a lot of people might not think about, but you are the actual, like, family spend.

52:03Is it really true that 88 % of couples don't, the marriages don't stay together? Yeah, that's a huge... I think finance comes into that as well. It's a big pressure. It's so stressful. They say it costs, you know, don't quote me exactly, but between four to six times more to raise a child with a disability than a normal child. And if your starting point is quite low, you can imagine the pressure and then often sophie you'll know this especially on the severe end one person can't work because they become a full-time carer and that's often the mom so suddenly the the the outgoings go up but what's coming in goes down and that balance is just um so working for john um i've been his ambassador for 11 years now and in that time i've also sat with him in many many meetings whether it's property or someone coming to him to invest and when someone mentions charity or something comes I've always said this to him there's a shift his eyes light up like this his life now is all about philanthropy it's all about giving back and working so closely with him and knowing him so well like this is it's just he always talks about it giving him like spiritual satisfaction like something that yeah money can't and we had our ball a couple of weeks ago and you know there's some of the children are there and to feel it and experience it and be in it you know that you're yeah it's it's i've i feel really blessed to have this role and to do what i do make a difference but also work with someone so amazing and great that can mentor me and has these amazing things and yet really down to earth and humble and simple in kindness and helping others um yeah I feel really lucky to have that that in my life and actually you see like there's a lot of things that obviously align in terms of your values um and can we talk a bit about your podcast as well yeah I'm gonna do soon um so you've been doing this for about a month is that right you said yeah well I've been working on it for a while but as you know excuse the the pun but literally spinning plates on everything you just don't have time to if I could just sit here and get it done safe I'm very um quick if I find an idea I want to do something done I don't waste time but I can't do that now because I've got all these other things to do so it's taken a bit longer and I think because I have for such a long time being working in this space of disability I kind of live it breathe it work in it and I felt like I just was getting to a point where I just needed a breath of fresh air just to do something a little bit different and but keep it reflective to me because everything always comes back to my own passions and morals and integrity.

54:51And also the skill set you had from your broadcasting as well when you started out as well. Yeah it had to be something that I would find fairly easy so like numbers we were talking about numbers earlier I'm a little bit like that like numbers just scare me a bit so um building this huge empire or you know I wouldn't go into anything to do with finance because that's not my strength so um I looked at my life and I just I'm surrounded by a lot of people and it felt like a lot of my friends are approaching midlife or back to 10 and 50 and it all had this edge of a little bit of doom and gloom like just insecurities about thing and actually life slowing down now and I was like hang on ladies what what on earth like we're just hitting our prime like the kids are now getting older doing their thing yeah look at your life you've gained so much experience wisdom like you've gone through so much probably pain joy like you're in a prime spot if you want to go do it now's your sweet spot to go fly like why on earth are you thinking the other way so i wanted to create this podcast to empower women to see this with a new lens not a fake lens because of course we're going to go through things that are different but let's like like lift each other a little bit in this time and be empowered by the experiences and driven for the future and all the good stuff like that and i think the beauty as well safely when i talk about my early days working at kiss 100 or mtv i've always been exposed to some incredible people and what I learned very very quickly was that there's so many people that you can admire for having such a talent like yourself like it's like it's so special to be in the room with people like that um but at the end of the day as well we're just two women having a chat and we can relate on so many things just by being human beings yeah and so I wanted to create a podcast where I brought in some amazing people that could talk about the extraordinary but then could also talk about the ordinary that every woman can just relate to um and so I'm just I've just really enjoying the experience I can't wait to have you on and uh and yeah and just and just enjoying what I'm seeing women are getting from it yeah um but also I think you might find um sounds a little bit like when I was uh starting this podcast and I didn't I didn't really know exactly what it was going to be about longer term like why I was doing in the bigger picture I knew that I wanted to have the conversations but actually sometimes you find it helps give you a map as well so when you were talking about where you're at in your life and what you want to do next and you know focusing putting the focus back into okay the kids are growing up I've done those what else where do I see myself heading it can give you these conversations I I think it's just sort of endlessly, like, impressive how, like, sharing experience, wisdom, you know, what you've learned, what's upset you, what's brought joy, all these things.

57:45It can really lift you up. Like, I just find I take a lot from conversation, actually. Like, really, that always makes me feel better than I did before. Yeah. No, definitely. We can learn so much from each other, can't we? Yeah, definitely. And someone that I work quite closely with and has seen the work that I've done over the years, I was saying, yeah, I'm thinking of doing something. And he turned around and he said, Joey, he said, it's your time. It's your time to do something now just for you. And I don't know, when he said those three words, I kind of felt it. And so then when I was thinking of a name for the podcast, I was thinking of all these crazy names.

58:19And then I was like, actually, I would like to be that little voice, that little whisper in every woman's head when she feels guilty or she's not sure if she should do it. and kind of hear my little squeaky voice going, it's your time. So that's what the podcast is obviously called. And it's just meant to be that reminder that it's okay now. You know, you've done a lot and you're always going to do it. You don't just suddenly disappear. But it's okay to now kind of focus on you a little bit or carve out some time for you. I'm thinking, firstly, I don't think your voice is squeaky. Okay, thank you.

58:49And secondly, I'm just like, wow, if you've already done what you've done and now this is your time. I'm just like, sit back, let's see what happens. Lightning bolts. I feel like you're going to whirl around and be in like a little superhero costume. But even you, like walking into your kitchen earlier and you're saying like the tour bus is outside and you're about to go on tour and it's like you've got five children, you've got this podcast, like you're doing all this stuff and you're still you as well. You've still got that time where you can just be you. Like that's what this is all about. Like I love that.

59:20Me too. And actually there's a lot about this chapter of my life that's brought that in spades which I wasn't expecting and it's such a nice feeling and I think as well you know the all the people we surround ourselves with that make us feel good and they reflect back a version of you that makes you feel you can take on these things and I think that's like the beauty isn't it of like um you know getting the good people around you so that you can feel lifted up by it and you feel you can cope with stuff but you're having a nice time because, you know, I know you've mentioned your husband, Richard as well does that for me, of just kind of keeping me in the right headspace really.

59:57So I think that's what happens when you get to this point. You kind of shrugged a lot of stuff off and you've kind of left with so many lovely people and you're like, ah, I must be doing the right stuff because everybody around me is great, you know? Yeah, I think life is too short as well, Sophie. And so you need to make your days count and having the right people around you is crucial. and maybe as you're growing up you don't know how to refine that tribe but then as you get older you get better at choosing and and knowing who to say yes and no to um and yeah I think I think that's been such a game changer for me as well that's very true but also isn't it amazing when you think back to you know the you that that had your babies um obviously so much of you is still the same but so many things you've learned about yourself and the muscles you've developed because of what you needed the strength you needed to find that's that's pretty extraordinary so congratulations and like well done and I can't wait to see what happens next thank you so much thank you

1:01:08oh how gorgeous is joanne and also how how true it is um well firstly yeah having the right people around you but also the idea of i think actually there's been a few guests where they've discovered things about themselves and developed strengths and growing muscles as we said uh for things they didn't know they were going to need when you first become a parent. And actually, it kind of continues. There was a situation I had the other day where I was dealing with one of the older kids with something, like an issue they were having with something. And I just sort of felt like, wow, I think I've just graduated to a new parent level with keeping calm and managing it and making them feel like they were, you know, in control a little bit more of what was going on, but also kind of overseeing what was going on.

1:01:57Anyway, you would have been proud of me. I can't go into details, but you would have been like okay cool it's not quite as significant as what Joanne's done but you know it's an example of when you yeah sort of continuing to get you hone your skills really uh and oh I'm feeling a bit weird today actually because if you could see me you'd see I'm surrounded by um open suitcases because tomorrow Richard and I are leaving so today has been the second half of a glorious really chilled weekend well chill but also fun so on friday it was my mum's 70th birthday party so it was about i don't know 150 people all came to celebrate and we had we hired a venue had a pizza truck band it was really cute and then yesterday was very very chilled but like got three of the kids haircuts and sort of potted about and then today is next level to Alan Chilled.

1:02:57So the sun's shining. We're going to have a roast dinner. My mum's coming over. Sunny's coming. Just very, very easy going and proper family. But in about an hour and a half, tour bus will be pulling up outside and I'm going to put my bags on it and it'll meet me tomorrow in Milan. I'm doing... I'm away for two and a half weeks while I go around. I think it's either 13 or 14 gigs. It'll be great. I'm actually looking forward to it now, but I also feel, obviously, heavy boots about leaving but actually on that note i put a message up on my insta the other day because i was packing to go away and obviously with the promotion for the album i've been away quite a lot and i was thinking oh i feel terrible you feel like you're in this subculture of parents that are a bit invisible the ones who leave particularly as a mom i sometimes feel like there's a bit of a stigma with going away to work but if you were one of the people who put a comment underneath.

1:03:50Thank you. Thank you. Thank you. Thank you. Thank you. It genuinely made me feel so much better. And I really appreciate that. I felt like I wasn't alone and I felt like it definitely helped me reframe it. And I've spoken to the kids about it too. I was like, look, this is... Hello, I'm Monica Reinagle, host of the Nutrition Diva podcast. Summer is here and with it, the hot and sticky weather. A morning working in the garden or maybe on the golf course can leave you more depleted than you realize. And plain water isn't always the most efficient way to restore the balance. That's where Liquid IV comes in.

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1:05:39Wayfair, every style, every home. and track every conversion in real time. Same skills you already have, brand new results. Acast, acast.com slash advertise. It's a two and a half week block. It's actually the biggest block of the entire year that I'm away. And this is me really going out there, working hard, but it's also not something I would sustain or want to sustain for ages. It's very much, this is what I'm doing now. And then once I've done it, I won't tour like this again. I mean, there's nothing planned for this intensity at all in the diary right now. So that means the earliest it would be, we sort of, I don't know, this time next year.

1:06:19So I just need to focus on that sometimes. Plus it is fun. There's something pretty magical about touring Europe because you fall asleep in one city, wake up in another city in another country. So that's all that. It's going to be weird, isn't it, for Jack? Because obviously he plays drums in my band. So when he falls off the tour bus in Berlin, he'll be like, oh, I ran here once. on that note would you like to hear how he's getting on let me have a look it's so clever this little app honestly i mean i said it's clever it's also a little bit like watching an uber so he's racing around for those who like this kind of stuff he did his halfway point of the marathon one hour 28.03 i know this is a good time he's coming up to the 30k mark um let's just see how he gets on someone's already finished someone finished the marathon in two hours two minutes i've just i'm still in my pajamas here guys anyway thank you so much to joran thank you to uh producer claire thank you to richard for editing um thank you in spirit to ella may who's not currently doing the artwork because she's on maternity leave with her beautiful baba but um ella may sending you lots of love obviously um when you're ready to come back come back but no rush your baby's beautiful and new and uh yeah thank you to you for lending me your ears thank you as well for all the suggestions i really do follow up and check out everyone that i see so if you message me on instagram on tiktok anywhere on tiktok i'm not on tiktok on x anything like that i will see it at some point and i will have a look because some of your ideas have been so so good anyway in the meantime hope you have a lovely day i'll be here again next week with another guest um and lots of love and thanks again for the album support it's it's really felt so lovely and as you would know the conversations i've been having with this podcast have 100 been a factor in what perrymenopop is about in about uh seizing opportunity feeling confident how to navigate the challenges having a team around you believing people are good being excited about things, remaining curious.

1:08:31It's really helped me enjoy my 40s in a way that I wasn't anticipating. And I really have poured all of that good vibe into the album so that whenever I feel wobbly, it's there waiting for me, like a little cape I can put on. All right, lots and lots of love to you. I'm going to go and finish packing, which would be a little bit strenuous, but nothing like running around. Take care.

1:08:58Thank you.