Ep 58: Parent-Carer Identity & Navigating Education with Caro Giles

Please excuse any errors of this autogenerated transcript

Dr Olivia KesselHost00:07

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation alongside many answers and solutions that were never talked to me in medical school or in any of the parenting handbooks. Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade. In this episode, we have the absolute pleasure of speaking with Carol Giles, a single mother of four and author of her first memoir titled 12 Moons. She writes honestly about what it means to be a woman, a mother and a carer to her wonderfully wired children, and about the value in taking the road less traveled. Her writing appears in journals, press, periodicals, including a monthly column for Psychologies. In 2021, she was named BBC Country Files Magazine New Nature Writer of the Year.

01:20

Join us for an honest and candid discussion. I'm sure you're going to enjoy this. Well welcome, carol. It is a pleasure to have you on the Send Parenting podcast. It's been kind of an amazing year for you. You've published your debut memoir, 12 Moons, and in it you write about kind of the role of a mother and a carer and the road less traveled, which I think will resonate with a lot of our listeners who are listening to the podcast. But I'd love for you to kick us off in terms of what that journey has been like for you and kind of looking at it from the lens of neurodiversity, as well as being a mother, and the road that you have traveled.

Caro GilesGuest02:00

Big question yeah, many things to cover there. Thanks so much for having me. Yeah, so I can maybe just set into context how I am now and what my life looks like now. I am a mother of four daughters and I'm a single parent as well, so it's just me and the girls. And the nature of some of my children's complex needs means that they can't attend school or means that school is not a place where they can thrive. So, alongside the medical appointments that I have for my children, I have one child with a diagnosis of autism and another child with complex needs it's currently going through various assessments, as well as two other children. So, alongside all the medical stuff, I also am kind of in the middle of various battles with the education system, and three of my children learn at home.

02:59

So I guess when I wrote 12 Moons, what I wanted to do was to write about how it was to try and hold onto an identity of my own when, by necessity, the caring I must do kind of takes up so much of my time and colours so many different aspects of my life. Things like it's very hard for me to work because the kids are at home all the time, it's very hard for us to go to places hard to socialise. As a single woman, it's really hard for me to meet anyone else because my children find it hard to be with another person. So I guess what I wanted to do which I talk about a lot in the book was write myself back onto the page, and I think that loss of identity that comes with the caring of many neurodivergent children is something that resonates with lots of parents and the number of messages I've had since publishing my book tells me that that instinct was correct.

Dr Olivia KesselHost03:57

And did you find through that process that you gained some of yourself back as well?

Caro GilesGuest04:02

Yeah, I think that I felt like I was able to take back a little bit of control and I think that by connecting with other families in similar situations, it has helped to reduce the isolation that I feel Partly. I write a lot about the landscape that I live in, which is Northumberland, which is the northernmost county in England, and so I talk about living on the edge of life a lot, how I live geographically on the edge of the country, but also on the edge of various systems that are in place to support me but have been unable to support me, and so that isolation is something that's really hard to grapple with, and I know that isolation is one of the biggest issues that families face when their children don't fit into the school system. So I definitely have found that to be a way to build a community around the sadness and the challenges that that brings. It's kind of a way of trying to put a slightly more positive slant on it.

Dr Olivia KesselHost05:05

Yeah, and not feeling so alone. I think is really key to find that community.

Caro GilesGuest05:10

I think so, and I also think it's more as well. It's more than feeling alone and it's more than being isolated. That loss of self that I write about a lot is also to do with the intense scrutiny that, as parents of children with different needs, we come under and how that can be very invalidating and how that can also add to a kind of erosion of self-esteem and belief in ourselves. And it's that as well that I think is very specific to special needs parenting that I write about in my book and in other things I've written as well.

Dr Olivia KesselHost05:47

It's an interesting phenomena that, because you can't see and it's invisible, that people then somehow blame or hold you somewhat responsible as a parent because they can't I don't know make sense of it or aren't educated or knowledgeable enough about it. But it's a completely different scenario if, let's say, someone was in a wheelchair or had something else.

Caro GilesGuest06:12

I mean, I think those physical disabilities, families that have to manage those also have to face so many challenges.

06:20

I know that because one of my children was in a wheelchair for a time and that presented a whole other load of challenges, but certainly the thing about not being able to see what is happening for that child is really problematic and I think we also are obsessed with fitting in and with conforming and I think when a child or a family doesn't do that, that really poses questions for the way that we kind of exist in society as well. I think that's deeply uncomfortable for professionals and for other people whose families perhaps conform more easily. I think when we're disbelieved, I think really what we're seeing is people not quite knowing how to handle us, but certainly it's very unhelpful and it's very kind of dehumanizing and difficult to live with on a daily basis. I think.

Dr Olivia KesselHost07:11

You have experience as a teacher. You worked within the teaching realms and then now, through your experience with your children, have taken your children out of mainstream school. How has that evolved from being in the system to out of the system and finding your way with your girls outside of school?

Caro GilesGuest07:32

So I trained as a primary school teacher and worked in a city primary school in London and it was just before the. It was kind of one of the last schools that was still not quite conforming to the national curriculum and the restrictions that I believe that places on teachers now and did after its introduction. So I was doing a lot of creative, doing a lot of music, a lot of drama, and there was a lot of pastoral work involved, a lot of diversity amongst the families, and that was what I loved about teaching and so, knowing that that was the aspect of teaching that I enjoyed, I then got a job working in special provision so I worked with young people who'd been permanently excluded from mainstream schools and I worked as a head of music at that school and that involved trying to engage children with very complex needs and I loved that because it was super challenging and the kids were demanding and they were difficult and they were violent, but if you could find a way to reach those children, there was something very powerful about that and the outcomes that I was looking for as a teacher there were very different to the outcomes that looked for in mainstream school. So I wanted a child to be able to participate in an activity with other children, or I would have loved a child to be able to tell me how they are feeling. I was not looking for a child to achieve a percentage in a test or to reach a certain level, so it was a really different environment, and I think that set me up well for what I'm learning through working with my own children at home, because for me, having had children who have been really broken inside a system that does not work for everybody, I now am looking for my kids to be able to somehow express themselves.

09:24

Sometimes one of my children finds it very, very hard to talk, so I have to look beyond that and think how can this daughter let me know how she's feeling? How can she let me know what she would like to do? That to me, is a success, rather than can this child do a Key Stage 3 assessment. So I'm looking for something very different, and what I found I had to do really was what the term that we use is de-schooling. So I had to re-educate myself because two of my children cannot respond to formal education in a way that helps them thrive. They're super.

10:05

If you were to meet my children.

10:06

If they were to do some, if you were able to test them, you would say that they were working above the national average, but actually, once you put them in a formal schooling situation, it causes them to shut down and to be unable to communicate, to freeze, to become highly anxious.

10:24

They can't thrive, and so I've had to find different ways to help them express themselves and to help them learn, and so that's been a real journey for me as well, and I guess what I'm trying to do at home is create an environment where they can thrive. And, in the longer term, what I would like to do is create environments or support systems outside of the home or within the home that can help children like mine, because the implications of having children that can't attend school for me and for the entire family are huge. So, whilst I feel like I'm winning in terms of providing my kids with what they need, I'm also not funded to do that for one of my children, and I'm unable to work as much as I would like to, which obviously has an economic impact upon my family. So I feel like I've thrown lots of information at you there, but there's just so much to explore.

Dr Olivia KesselHost11:16

No and it's that dichotomy between doing what's right for your children and then also what's right for you financially, what's right for how you as a family and as a unit survive as well. So sacrifices are having to be made, which you really shouldn't have to, for your children to be supported, but it's not possible within current systems.

Caro GilesGuest11:39

Exactly. However, I am asked repeatedly to declare that I'm electively home educating my children, so choosing to do so, and I keep refusing to do that, which means I'm now going through a tribunal with the local authority because I am not making the choice to do this. I am saying that the local authority is not providing suitable education for my children, which is no fault of my children, no fault of mine, no fault of anybody, because there's actually nothing wrong with my children. They just need to do things differently. And that is the case for so many thousands of children across the country, and I think there's a growing movement behind the idea that school is the only place that kids can learn. It's just been proven not to be the case, particularly since the pandemic demonstrated that anxiety levels really shot up when kids were expected to go back into that very formal system.

Dr Olivia KesselHost12:31

Yeah, no, it's so true. And it's such a difficult system to navigate and fight against, alongside everything else you're doing at home and trying to accomplish, and it's a costly system to fight.

Caro GilesGuest12:45

For sure. So I think so in terms of my own privilege. I have a postgraduate education, english is my first language, I'm articulate and I am healthy at the moment, so I'm able to put energy into doing that, despite having caring for four children on my own. That's not easy and there is an impact on my mental health and on my physical health in terms of the kind of combat that I'm constantly in. But if you imagine what that is like for someone who hasn't got those opportunities that I have, that's really tough.

13:19

I mean, I'm not even many families who can afford it pay for legal support to go through the tribunal. I can't afford to do that. I'm on a low income, so I'm representing myself. That might end up going really badly wrong. I don't know the law, I just am reading it on the internet. I'm reading it from other parents who've been through the same situation. It's not ideal, but I hope that I will be able to be eloquent and passionate and informed enough to convince a judge that my child, who's had no education funded for two years, deserves one as much as the next child. We'll have to wait and see what happens.

Dr Olivia KesselHost13:58

And with your children? Had they all been in education before.

Caro GilesGuest14:03

So my oldest daughter went to school for two years, became it was clear she wasn't thriving, so I deregistered her.

14:12

I home educated all of them for a little bit when they were tiny, and then, when my marriage ended, they all went to school, apart from the oldest one who by then was so traumatized by her two years at school that she couldn't manage it. But everybody else has been to school, and then one of them still goes to school and really enjoys that way of learning. But one of them has been made very poorly and another one I started to see was really beginning to struggle and I just felt worried that she would get as ill as the other, as two of the other ones had had. So yeah, we've tried, we have tried to fit inside the system and only one of us, only one of my kids, really is managing to do that. So, yeah, but you know it's not just me. There are so many of us people contact me every day saying that school isn't working for their child and really the government and local authorities are burying their heads in the sand. It's a national crisis.

Dr Olivia KesselHost15:09

No, absolutely. I completely agree with you, and it's the canaries in the minds of kids that are struggling, who can't literally get sick from it, who are kind of leading the way. The other kids, I don't think, are thriving within the system either, but they're not to the degree it's such a constrained system.

Caro GilesGuest15:27

And it's terrible really that we are waiting to see children completely crumble and break before we want to put anything in place. I mean, there were many red flags excuse me for my daughters and I was dismissed as neurotic, as middle class, as over-anxious. And it's so sad because really, I just was informed and invested in my children and if I had been heard and respected a little more, perhaps we wouldn't be where we are now. So I just think there is so much work to do in terms of working with parents and trusting that parents know their children know what's best for them.

Dr Olivia KesselHost16:10

Yeah, and sadly, early intervention and putting the right support in place can really navigate a lot of what happens when it becomes, where your daughter can't possibly go back to school because she's been so traumatized.

Caro GilesGuest16:22

Yeah, and we also know as well that early intervention in terms of early diagnosis for autism, adhd and other conditions is really massive in terms of lifelong chances. And it's just impossible when you have a child who masks very, very effectively. It's just really, really hard to be believed in terms of what's happening because they think this child has managed for a long time and really what we're seeing is the cost of that child not managing and trying hard to manage in a neurotypical society and breaking and beyond the believing and the understanding and the education that's needed within the medical profession. You know the psychiatrist and psychologists and other professionals who we've had hundreds of appointments with. It's also drastically underfunded. So you know it's a perfect storm, isn't it really it?

Dr Olivia KesselHost17:16

is. And it'd be interesting and I think I already know the answer from that answer that you just gave in terms of labeling your child, because, you know, some parents really have a dilemma on their hands when they're like well, I don't want to, you know, get a diagnosis or a label because it might stigmatize my child, it might hurt them. And then there's other parents who are very supportive and like myself, and it sounds like you as well, who want to get that diagnosis, so we know how to support and help our children. So what are your viewpoints on getting a label or a diagnosis for your child?

Caro GilesGuest17:50

Yeah, I mean I've been criticized for pursuing strongly diagnosis for my children and still am, even within a close network of people that I know. But with my oldest daughter I know that beyond all of the therapy and medication, actually the diagnosis of autism was as powerful and as important in terms of her feeling validated and understanding that actually there was nothing wrong with her. It was just that she needed to do things differently. And she has continued to understand her identity and work hard to advocate for herself and others within the autistic community since that diagnosis. And I think it was crucial to her recovery because obviously her illness wasn't autism. You know, autism isn't an illness but the illness was loads of mental health things that had gone wrong for her because she felt so misunderstood and was being forced to do things that made her ill, which is why I'm pursuing various diagnosis for another child as well.

18:52

I just have seen firsthand the value in knowing what is happening for you. You know, for knowing who you are and what that means. I mean I think there's a problem with the word disability. My oldest child identifies as disabled. She finds that useful because it means she's able to start to self-advocate and to say actually this is what I need. I'm disabled, I'm a disabled young woman and blah, blah blah. I need to do this if I'm in this situation. She really impresses me with that, but lots of people think that you are less than if you are disabled and really, as with so many things, it's society that needs to get a grip here and take action and educate themselves, rather than us thinking that a label of autism or ADHD or any other label of anything at all is something to be ashamed of or something that will go against you. At the moment, it is very difficult, for the statistics for autistic people aren't great, but in terms of identity within our family, I think it has been crucial.

Dr Olivia KesselHost20:00

Yeah, no, and I mean it. Disability is. You know it's a double-edged sword. You need the support but you don't want to be. You know, it is just because society hasn't evolved to a place where we can accommodate all people. And it's to get that kind of society where you can flourish as a neurodiverse individual and it's not considered a disability. It's kind of like the medical model versus the social model of disability, you know, and shifting that, and I think it is starting to shift but it's not fully there yet.

Caro GilesGuest20:34

Sure, I mean, I do think that a label is useful sometimes when you're out and about. So, for example, if we are going to the leisure center and we want to have a swim, we would always go and it's really, really quiet, but they always have music playing. So I have to ask if they'll turn the music off. And at one point I was trying to say I have a child who has a different sensory profile. They have complexity, and the person was just looking at me and saying I have no idea what you're saying to me about.

Dr Olivia KesselHost21:00

Slazing over.

Caro GilesGuest21:02

So now I just say my daughter is autistic, and they say, oh right, okay, and they understand that language, and so it's also about having the language to use. That society will understand as well. But even within that situation, sometimes once the lifeguard said to me oh, but people in the swimming pool like to have the music on, and I said, well, I'm not asking you to turn the music off because we don't like the music. I'm asking you to turn it off because my child will not be able to access the pool if you have the music on. He didn't. He really didn't understand the difference between between you know, just having oh, I don't really fancy that on, just turn it off please, and just saying we can't come in if you don't do this.

21:43

So that's the type of mentality that we're working against every day and that those kind of everyday battles as well, I find are another aspect of special needs parenting that are really, really exhausting. I don't know how you feel, but every time we go out there has to be some kind of little debate about something, and you know the checking and the hyper vigilance around. Will this be an environment my child can tolerate? I find that quite a tricky bit of being a parent of kids with complex needs.

Dr Olivia KesselHost22:11

It's almost like you're on high alert at all times and already you're in a higher alert state, having, I mean, four children, three of which you're self educating at home. I can I can bet you have a lot.

Caro GilesGuest22:24

Yeah, I mean, it's just like you're constantly. I see that one of my children at the moment is constantly hyper vigilant because her anxiety is so high and I think, as a parent as well, you kind of you kind of can substitute what what's happening for your child. But I feel it whenever I leave the house, even if I'm on my own. Now, if I walk into a shop, the music's really loud. I quickly look around and think, oh, what is the speaker? You know, you just become so high for alert to everything that's happening, don't you?

Dr Olivia KesselHost22:49

Yeah, and you know, what's also interesting to me is the kind of dichotomy between how society in some, in some regards, you know, like I was in France one of on a half term holiday and the supermarket there said you know, between this hour and this hour we'll have no music, the lights will be dimmed. It's for a neurodiverse people. The airport is great, you know. In that regard, hotels can be great. And then you look at our schools, are they willing to do anything? You know it's, it's there, is, you know, like it's. It's interesting Disconnect, doesn't that? Yeah?

Caro GilesGuest23:20

It's. It's really odd this. I mean. I think probably it's down. It's down to lack of education in terms of, I mean, even within the child mental health and diagnostic system, there's such a lack of understanding around, masking, for example, around yeah, just around lots. I find I am often the expert in the room just from researching stuff online, you know, and I'm not someone who has medical experience. I just I just am always looking for ways to be able to explain what's happening for my kids. So I just think something is happening somewhere where it's just lucky if you get a psychiatrist or a GP or an occupational therapist or whoever it is who understands what you're saying. You have to.

Dr Olivia KesselHost24:08

You have to find the ones you know. You have to find those ones that are passionate and have that knowledge and that teach you. You know, but it's not common knowledge, do you know what I mean? Like it's not common knowledge among GPs. I think there's even been statistics that have shown. You know, with ADHD even oh, does it really exist? You know in their gut feeling. You know so, and if I look, I mean my medical education was decades ago. It wasn't really brought up that much. You know what I mean. It wasn't a huge topic of discussion or on the syllabus. It might be different now, I don't know, but I think there's a lack of knowledge there, you know, and that is a huge issue, and that is a huge problem.

Caro GilesGuest24:48

Yeah, there's a big gap and I think as well there's something about going to going to appointments again and again. And you know, and often if you're going through the process of having your child assessed for something or your child has mental health issues, you see lots of different people. There's kind of a hierarchy. You start off, you know you start off with a GP, then you go to primary mental health and then you might get referred to CAMHS or CIPs or whoever it is. And that's a very problematic approach as well for children like ours who can't, who need to have consistency, who need to not have lots of change, who need to be able to trust the people they're working with.

25:25

And already that model, I feel, doesn't work. And then, within that model, for the parent or the advocate, the carer, whoever it is, you're having to explain yourself over and over again to lots of different people. Sometimes those people won't believe you. I feel that there is a trauma for the parent as well as the child, for the parent attached to the experience of trying to advocate for a child who has an undiagnosed neurodiverse condition. I don't know how you feel about that, but I definitely feel that I feel like I have to kind of really gird my lines and prepare myself for going into meetings now, because I've had several hundred meetings and at many of those I have had to really fight my corner and I just feel it shouldn't be like that.

Dr Olivia KesselHost26:15

No, and it's sadly a common experience, and I've talked to moms who've questioned their entire parenting journey or their entire role as a mother because of that backlash from clinicians, from educators, having to fight your corner. But what's interesting is 98, 99% of parents or moms who have this gut feeling about their child. They're correct. So the research is really in our corner, but, as you say, you have to battle it.

Caro GilesGuest26:49

Because who wants to spend their days inside these horrible systems? No one would want this for themselves or for their family. It's draining and it's depressing a lot of the time. So people aren't seeking help because they've got nothing better to do. If your child is behaving differently at home to what the people see in the appointment, there's a reason that that parent is there. It seems mad to me that that has still been questioned.

Dr Olivia KesselHost27:14

And that you're not. I've even had and it sounds like you as well friends who are like, oh, you just want to get funding so you can have free school for your close friends. And I'm like, yeah, that's right, I want to have all these challenges.

Caro GilesGuest27:26

So I can get a free school.

Dr Olivia KesselHost27:28

You know I, yeah, it's just you walk in my shoes for a little bit and then and then make that statement, you know.

Caro GilesGuest27:36

Yeah, it's. I write about that in 12 moons, that the yeah, just just the way that that being told again and again that you're wrong, that what you, what you, that your truth is, is somehow not you know, is I talk about this professional gas lighting that I think happens. It's a great term, yeah, because what I talk. I talk about kind of getting lost inside my marriage and then I talk about how that is exacerbated by being completely lost and gas lit inside a system that is supposed to be there to hold me and to hold my children and just the the impact on on that have been told again and again that what you have experienced is is not what you've experienced. It's, it's, it's very damaging.

Dr Olivia KesselHost28:21

It's demoralizing. You know what I mean and, like you said, you are an educated, strong individual who's still fighting, you know, and you just think of all the other people out there that don't have as much, and that's you know. That's why I started this podcast actually was because of the fact that you know knowledge is the first step, and knowing that you're not alone and knowing that, no, you're not going crazy, no, you know, stick to what you believe in you, you can trust yourself, you know, is so important.

Caro GilesGuest28:50

I'm feeling equipped to do that as well, because I have certainly felt throughout the diagnostic process and also the tribunal I'm going through at the moment to try and get a funded education for one of my children, I definitely got to stages where I have thought that people are being, and systems are being deliberately obtuse in order to To try and break me. I have, I have really felt that that has been the case and I have, and I have sat back and I have thought is this the point when I Stop? But is this is this worth more than my health? Is this worth more than my sanity? And so far, it has been worth more still to try and secure funding for my child, who is only 11, because, after all, if I don't get this funding, I have no funding.

29:37

For another seven years or something for my, you know, and I feel like I have to do that for her. But but it's not right that I should feel that I'm I'm being broken by a system that is supposed to be in place to help me. That's, that's not okay.

Dr Olivia KesselHost29:52

I completely feel your pain and I mean when I went through the tribunal of my daughter it felt like a death by a thousand knives, I have to be honest, and my heart rate was consistently 15 beats higher than it was normally during that two and a half year period. You know, I mean like physiologically it, you know it. They do try and nearly break you, you know, and they have the money and they have the power and they have the systems in place to To trap you. But you know, all I can say is keep going. You know what I mean. Keep fighting.

Caro GilesGuest30:27

But it's, it seems. What gets me about the tribunal is that, even though local authorities are acting Obviously unlawfully, you still have to wait years to prove that they're that they're acting unlawfully. And at no point Is the system child-centered or family-centered, it just.

Dr Olivia KesselHost30:49

It's battling. I mean, in my daughter's case and I was lucky I was able to get legal representation because he suggested doing a subject access request on the local authorities emails with my daughter, which is something I would highly advise doing. So they were trying to say that this school could meet my daughter's needs and the school. I had been to visit the school because I was really happy if they could meet my daughter's needs with all of her Assessments, and talked to them about how they would support my child. Well, they said they couldn't support my child and they had grave reservations. Plus, the local authority wanted to put her one year ahead. Okay, she's already struggling in school, but putting her one year ahead, which is solely for cost benefits. So, anyway, we did this subject access request and got all the emails between the local authority and the other school and after reading through the 500 pages, even where the local authority had said don't put anything in email because parents are getting savvy to asking for these emails, they put in their email exactly what they thought it would cost to support my daughter in their school, which is about 60,000 pounds a year. Okay, the local authority then sent an email to myself saying this school can support your child for an addition of 6,000 pounds a year. Did they forget some zeros? No. So I said, oh my gosh, we, we've got them. We've got them.

32:08

I said to my solicitor I'm like now, now they have to give in. Look with, they've been fraudulent. He's like Olivia, no, I'm sorry, we can't, we have to actually still play this game. It's like cat and mouse. We can't, we can't hold them accountable for this. And I was like I don't mean they cheated, you know they've lied. And he's like no, we will tell them of this and this will help our case, but be careful of the end. You can't mouth off Olivia. And I'm like hey, you know it's. It's as if they have a Special privilege that seems insane.

Caro GilesGuest32:39

It really is, and actually what's also quite difficult is managing managing our emotions around these situations.

32:46

So I've had lots of meetings and I have a really excellent Person who is from my local sendy ass, so she's like my support officer or whatever and she has attended many meet, online meetings with me and I appreciate that because not only does she know the legalities, she also can witness what people say and she sometimes remembers things I haven't remembered or writes them down.

33:10

But but I try very hard to be speaking as I'm speaking to you now, but inevitably, sometimes, when things seem very, very unfair or I receive very, very bad news, I become emotional and when that happens, rather than people thinking this poor woman, she's, she's breaking because she's been pushed so hard, they think, oh, this, this woman is slightly neurotic. This woman, this woman isn't coping. Is this woman trustworthy? You know when, whenever, whenever a woman demonstrates any kind of emotion, it pretty much backfires, and so I find that very hard as well, because, because we're not robots and and anything is linked to our, to our mothering inevitably is going to be emotive, you know. So I Feel angry when that backfires on me as well, because you know we're only human, aren't we?

Dr Olivia KesselHost34:02

Yeah, and there's such, there's already such pressure with our children to be the calm, to be, you know, you know, I mean it is a pressure cooker and then when you have that, that injustice or that, no, or that, whatever it it's, it's, it's superhuman, yeah, and it's so tired of the Because, as you say, we always have been like the soft one, the gentle one, the calm one, and, and actually what?

Caro GilesGuest34:29

what is wrong with sometimes being the angry one? You know what is wrong with being the upset one, that there is nothing wrong with that, but I, I feel I feel like that that goes against me on occasion. So I'm a little bit worried about when it comes to the track, if it get, if I actually get to the stage where I have to Meet with the judge and be speak against a local authority on my own, I know I'm gonna have to deploy all of my Acting skills and not look like I'm a weak woman, which is what they will think if I start sobbing with anger.

Dr Olivia KesselHost34:58

Like my solicitor said, olivia, like you know, he goes. I have seen the most meek. I parents and you know mothers go absolutely ballistic Towards the local authority, on on the stand. And he's like Olivia, you are ready to me show tendencies, have a bombastic personality. Let's say he was. He was, he was saying Don't do it, olivia.

35:26

He's like you need to be calm, you need to to not bash the local authority in front of the judge. You need to Keep your wits about you do? You know what I mean? And he's like you know, because You're gonna lose, as you say, the respect of the judge and you're gonna, you know, you're gonna Give credit to the local authority where none is due. And I think, if I you're putting it in that frame in my head, I wasn't gonna lose it because you know, and actually they conceded the night before after you have to pay for all your experts and everything like that.

36:00

And when they finally said, when the judge said to me oh you know, dr Kessler, you are you happy with this? I, literally I was. So it's been, it had been years I burst into tears because there was, you know, and it was like winning, you know, the lotto or having my Oscar Academy Award given to me. You know which is ridiculous. It shouldn't be that way and you shouldn't have to get to that point. In a in a tribunal situation with my daughter's case was cut and dry. You know, it's black and white. It didn't.

Caro GilesGuest36:29

I thought I won the last, for the first door to I had to go to mediation and I won it on mediation but I, so I didn't have to go through the tribunal. But I know that was like three or four years ago and I think things have become. I think funding has become much, much harder even in that time. So I was, I was so naive, I was convinced I I would get it anyway. Then, when I didn't, I thought I'm definitely going to get it on mediation. She's had no school for years, she's sick. No, now I'm going to try.

36:54

View. I'm like, oh no, I've really underestimated what was going to happen here. But when you were talking about having to hold yourself together for the professional situations, so I think in the last year I've had a hundred and twenty appointments. For what? For my children, and so I've had to hold myself together for all of those appointments. Plus when I'm caring for the kids at home, I'm trying to be the calm one, plus when I'm doing the tribunal stuff, I'm trying to do that as well.

37:19

And so I think that when I'm writing, maybe that that is the outlet for all of that, and I I think that so many parents and carers will Well understand what that is like and should feel reassured as well that it is not healthy actually the amount we have to to hold ourselves together. In that it's good if we can find outlets for our rage and for our sadness and for all of those things, because I Sometimes worry that in the future there will be an impact of all of this emotional Weight that I'm bearing at the moment and that something physical will happen to. You know, I'll become poorly, just held so much in and yeah, and just had to manage so much for so long. I think that that might be a fear that lots of Send parents have, especially maybe single parents as well, where you just think who's gonna pick up the pieces if I break?

Dr Olivia KesselHost38:10

Yeah, and I think that's why it's so important to take care of yourself as well. And I know it sounds impossible within all of those circumstances, but, you know, finding what is your release, whether that's singing, whether it's a dancing in your kitchen, if it's going for me, it's exercise, like I have to exercise and finding that way to release it, because otherwise you, you can't keep it up.

Caro GilesGuest38:32

You know, I think we'll get sick and I think as well that this connection as well so yeah, with you is something that is incredibly nourishing for me and hopefully, when people listen, that's something for them as well. And I belong to an online Art therapy group and it's just Parent carers and most of the parent carers in that group, their children can't attend school, and there is something very, very specific about our needs and the emotional weight that we carry that makes it very, very helpful to spend time with other people who experience the same thing, because I Wrote about it this morning actually, the whole thing of not quite fitting in and not being on that school run or not been able to attend that Event, because you know those things are going to be not work for your kids that is so isolating. So I do think if you can find a way to Connect with people experiencing exactly the same thing that you are, that is also a very great source of support.

Dr Olivia KesselHost39:29

Yeah, and and people who have walked in the same shoes as you. You know, because there's there's a degree of shame and stigma, also even within your normal friends talking about your, the challenges that you have, because they don't get you, they don't understand it.

Caro GilesGuest39:43

And that's and that's isolating in itself, isn't it because you can feel? One of the things I find hard about being a full-time carer is I just do you often feel like a bad friend because I so often have to say no to things, or I just have no time because I've got four children all the time, or a hundred million appointments, and I want so desperately to, to be a good friend and to be able to go out and do things or go and stay with someone or go on a holiday or you know, I want to be that person and it's very, very valuable to me when I have friends who understand that and who don't ask anything of me but who find, you know, like a conversation with me or a short bit of time with me, like that's enough for them. They know that I'm giving what I can, that that's something that's very valuable to me.

Dr Olivia KesselHost40:28

Yeah, and those people are Angels. You know, I call them angels, angels on your shoulder, you know. But you created a community as well, didn't you? On? I haven't even heard of it was what's called substack that you created. You created that didn't you?

Caro GilesGuest40:43

well, I'm just, I'm quite new to substack, but I'm that's what a bigger name is I am.

40:50

I'm quite clueless but becoming a starting to see what the joy is with substack, because that it just is a really another really nice way to Connect with people.

40:58

I feel like on Instagram, that has been a really nice way of creating a bit of a community around Parents whose kids can't go to school, or Also single parents, people, women who've been through divorce, women who have felt lost all those things who are isolated. But on substack I've started a new and it's like a newsletter, I guess, that you can subscribe to and it's called unschooled and it's about what it is like. I yeah this idea of living on the edge, this idea of not fitting in, and it's part kind of a gently stepping my toe into activism. I guess I'm wanting to raise awareness of what it is like and of what our experience is, but also it's a way of wanting to which I do in 12 means as well wanting to communicate the magic in a life lived differently and in a different parenting experience, and it's yeah. So I guess it's a way of wanting to be fierce and be angry, but also to celebrate the life that I have as well.

Dr Olivia KesselHost42:01

Because it's not all bad. So that's that's a good way of you know there's the good and the bad of it. It sounds like you're exploring.

Caro GilesGuest42:08

I mean, I think that we're in the really in the thick of it right now. I think in. You know, it's probably going to be too late for my children, because the education system for kids like mine is broken, but I hope that in the future, the fact that we have gone through this, that we have fought this fight, that we have said life can be lived differently, people can do things differently and success can look like something different. It doesn't have to be this kind of I don't know kind of patriarchal, capitalist idea that you have to be the best at everything all the time. The fact that we're having this fight now means in the future, hopefully other people won't need to.

42:43

But also, for sure, in between all of the appointments and the arguing and the scrutiny you know there are, there are moments of magic and and and I've had to really slow down the way I live because of my children, and that's hard for me because I'm quite a frenetic person. So I guess for me it's trying to look for those glimmers during the day in life when I can just yeah, kind of it sounds, you know be grateful. Everybody talks about gratitude and it becomes a bit wearing after a time, doesn't it? It's looking for the magic amongst. You know the challenges, I guess.

Dr Olivia KesselHost43:21

Yeah, and you know, like, like I say to my daughter, I'm like you got to put, you know, put the positives in your bank account and then, when all those negatives smack you in the face, you've got a few positives to look back on.

Caro GilesGuest43:31

Yeah, that's it, that's really it. Yeah, that's a nice way of thinking about it, yeah.

Dr Olivia KesselHost43:37

Well, thank you so much, Kara, for being here today, and I have. I have forewarned you, but I would love if you could give the listeners three top tips to take away with them. What if you could?

Caro GilesGuest43:47

ask me that I'm going to ask you some questions now. Three top tips for just for life.

Dr Olivia KesselHost43:52

For other, moms in life, who, who, who are going through this journey right now that they can take away with them.

Caro GilesGuest43:58

Okay. So yeah, my top tip is definitely to find your tribe. Yeah, so I I did find lockdown quite good for finding my tribe, because I live in the middle of nowhere, but everything came online when lockdown happened and so everything really opened up to me and since then I have found that the online community has been really, really important in terms of me feeling heard and feeling understood and feeling validated and all those things I don't feel in day to day life. So that would be my top tip Find your tribe. My next tip would be so when people say you really need to look after yourself, make time for yourself, sometimes that can just feel like another unrealistic job, because being the sole carer of four children who can't all attend school means there aren't very many gaps in the day. So that's part of what I was talking about just now with the looking for the magic. You know, if sometimes I set my alarm early so I can lie in a bath before the kids wake up, I can't just sit and watch the kids Wake up, because I know I won't get to sit down again for the rest of the day.

45:01

Like, be kind to yourself about what you can achieve in terms of just doing a little thing for yourself. I love to go running. At the moment, I haven't been able to do any running because my child has not been well. I haven't been able to leave her and that feels horrible for me. What can I do instead? Okay, my child can probably tolerate being on the beach for half an hour on some days, so that's going to be my alternative. Just be kind to yourself about what is realistic within your life. What is normal for most other people is not achievable for you, necessarily, but that doesn't mean that you are less. So that's that one. The third one, I don't know. I mean sleep. I'm so bad at sleeping, but everything is better after a good night's sleep, isn't it? Also, at this age as well, where the menopause starts kicking in, sleep just goes out the window as well.

Dr Olivia KesselHost45:53

I mean, it's so important for us, it's so important for our children, and without it, that tank is like you just get up and it's already on fumes.

Caro GilesGuest46:04

I mean, I think sleep looks a bit different in my house as well. So maybe that's another thing is that I try and be kind, because my children go to bed quite late but they might sleep in a bit later because they don't go to school, and I use that little chunk of time in the morning to do my writing and to just set myself up for the day. So I think something about sleep is important. But also, if your routine looks very different to other people's and that works for you, kind of stick to that and be okay with that. Yeah, try not to try not to listen to any judgment on that. My family's life looks very, very different to all of my, all of my friends, but you know it works. We manage the best that we can and that's often all we can do, isn't it?

Dr Olivia KesselHost46:49

Absolutely, and you know, beat to your own drum. There are no rules for this life.

Caro GilesGuest46:53

Yeah, there are none, but sometimes it feels hard to always have to be, like you know, flying that flag, doesn't it? Sometimes it's so nice to fit in, isn't it? Sometimes it's less tiring, but I find there actually to be something quite glorious about striding out on a different path, yeah, so I hope other people can feel that too.

Dr Olivia KesselHost47:13

I completely agree with you. I always beat to my own drum, as does my daughter, and you know what it makes life interesting, you know never a dull moment. Well, thank you so much, carol. Have a wonderful rest of your day and thank you for joining us.

Caro GilesGuest47:27

Love seeing you, thanks so much Evia, Take care Bye.

Dr Olivia KesselHost47:31

Thank you for listening Send Parenting Tribe. Please could I beg you one more time to please rate us in the Apple Podcast app, which basically, according to my statistics, is where most of you are listening to us on. It'll help us reach a greater audience. All you have to do is click on the Send Parenting Show, not the episode. That's the key. It has to be the show. When you've clicked on the show, then scroll all the way down to the bottom and you'll see ratings and reviews and you can click on that and then rate the show. Thank you in advance. For those of you who can spare the time, it's much appreciated, wishing you and your families a wonderful week ahead.