Automated Transcript Episode 22

Episode  22: "Anxious Mothers" and the UK System of Care

Speaker Ellie Costello

Please excuse any errors as this transcript has been automatically generated

Dr. Olivia Kessel:

Welcome to the Send Parenting Podcast. I'm your neurodiverse host, Dr. Olivia Kessel. And more importantly, I'm mother to my wonderfully neuro divergent 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 taught 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.

Dr. Olivia Kessel:

In this episode, we'll be speaking with Ellie Costello, director of the Charity Square pegs and author of the book Square Pegs, inclusivity, compassion, and Fitting in a Guide for Schools. We had such an amazing discussion and covered so much that I've decided to split the recording into two episodes. In this first episode, Ellie will discuss with us the impact of politics and economics on the provision of Send Children through the lens of her journey as a parent carer for her son, we will unpick the unfair label of anxious mother imposed by both the education and healthcare system on Ellie in response to not knowing all the answers themselves. This is a definite must listen. Welcome Ellie to the Send Parenting Podcast. I am so excited to have you on the show today. You have been a warrior for almost 10 years now, fighting against the current codes and policies in schools regarding school attendance.

Dr. Olivia Kessel:

And you know, I'm, I take my hat off to you. I'm just starting my journey and you've been at it for plus nine years now to advocate, and I know it, you know, it was started by your own personal struggles, as has, you know, the impetus for my podcast started with my own personal struggles and really wanting to help other parents on their journey and to really change a broken system. So I am really excited to hear your views and to catch up on what you've been doing for the last nine years. So, welcome, <laugh>.

Ellie Costello:

Oh, thank you so much for having me. I'm so glad this is actually happening. So we've been talking about it for a little while, haven't we? And the day is finally here. I'm, I'm all for it.

Dr. Olivia Kessel:

Excellent. And you know, I know you have a really busy schedule, so I really appreciate you taking the time. Could you share with us a little bit about your journey, um, uh, how you became this warrior advocate and, you know, what inspired you?

Ellie Costello:

So, um, I became a mom in 2005 and my eldest entered education in 2010, right at the point that the coalition came in, we had a general election. And so we had, um, we were sort of coming off the back and I am going to sort of politically land it cause I think it's important. But we were coming outta the end of the last labor, government and labor education policy, education, education, education, and also things like, um, antisocial behavior, orders for children and families, things like that. So that was the kind of landscape. Um, but, you know, as a first time mom, I was really excited about my eldest starting school. He was academically able, you know, the words gifted for Bandi, Duran <laugh>, you know, and, um, which, you know, now in hindsight, you kind of look back at these sort of the ways that children are sort of talked about and sort of, you know, aspirationally um, referenced.

Ellie Costello:

And, you know, I think that ties into mental health that we're seeing now, but also sort of the discriminatory gap that we're seeing now. Anyway, I digress. I do that a lot. I'm sorry. No. Um, so, so we entered, um, education in 2010. We had a new coalition, um, and of course we had austerity announced. Um, and, um, but we entered really sort of in a sort of wave of what was in the press at the time was making schools safer, tackling discipline, having high standards and accountability and all these things. I didn't know what any of that meant. We were just going to our town center primary. Um, and, and that was it. Um, we started sort of primary education and I had, um, my eldest had been chronically unwell from birth, so we had a lot of, um, uh, illness. So we were sort of already sitting under the health umbrella, but it was never diagnosed. I was just told it was phases, et cetera, and he would grow out of it. And I, I realize now I've got my notes, I realized I was termed a, an anxious mum on day two after he was born because he was fitting <laugh> and he was fitting quite significantly. And the notes were, mum is very anxious. And I was like, well, understandably. Yeah.

Speaker 3:

Who wouldn't? Who wouldn't be? Yeah, who wouldn't

Ellie Costello:

Be. Yeah. So, um, so anyway, and it's interesting cuz that anxious mom label keeps on sort of cropping up, kept on cropping up. Um, but yeah, so we entered education. Um, he was just chronically unwell. Um, we noticed some sort of things like, you know, coordination wasn't great, struggling in certain areas, but academically able, socially not a problem. In fact, the feedback that came back was we'd like him to engage more. He's very quiet. He's quite, the withdrawn wasn't used, but he's so good. Sometimes we forget he's there

Speaker 3:

Okay. Was what was

Ellie Costello:

Said. So, you know, and I knew I had a very quiet, timid kid who was chronically in pain from day two of being alive. Uh, cried a lot. And, and then one day at six months old just stopped. So the 18 hours a day crying just stopped. In hindsight then, if we fast forward to 2014, we've had lots and lots of chronic illness, some developmental stuff going on, um, some low level bullying. Um, and we fell headlong into a health crisis, um, which took six months to unpick. Uh, we were in and out of hospital and, um, it was, yeah, massively challenging when the NHS don't know what's wrong or a doctor doesn't know what's wrong. And so what happens is the lens comes background to mum. Suddenly, you know, as soon as soon as you're born, as soon as your child is born, you're mum.

Ellie Costello:

Right? You lose your identity and your son <laugh>. Uh, but, um, but you know, there's, there's this kind of, you know, um, dehumanizing actually, you are just, you're just this, this thing, this, this role for society. Um, so we, um, yeah, so he'd been really unwell, uh, fell into a health crisis six months in and out of hospital. Eventually the GP couldn't find anything and to, and my son by this point was having all sorts of sort of rheumatoid flares and all sorts was going on. Um, uh, was hallucinating, mental health was going off. The scale was extremely poorly. And, um, the gp, we were, I was desperate, absolutely desperate. And we, um, eventually I kept on going back to the gp. I went three times in a week and on the third, and I was just, and I felt like I was going mad.

Ellie Costello:

My my kid was in such pain, he wasn't sleeping, he was shaking in pain. And the GP said to him, um, there's nothing wrong with you. Your mom's making it up. She's making you unwell. You've got to start going to school. There's nothing wrong with you. I've examined you. There's nothing wrong with you, off you go. She begrudgingly referred us to a pediatrician as a local hospital. And that took another 27 weeks to come through. Um, and, and so it was suddenly really scary because some fundamental beliefs that I had about the safety of the state for healthcare, for compassion, for psychological safety, that I would be believed, you know, yeah. This was like huge stuff was going on at a time that my child was not getting any better, was spiraling more and more. And we were having so many weird and wonderful things happen

Dr. Olivia Kessel:

And was suffering and suffering. And you, you know, not to be able to help your child when they're suffering is, you know, and then to the people who are supposed to help you, you know, I'm a doctor. I can't believe that that's how you were treated. You, you, it's, it's horrific.

Ellie Costello:

So the reason why I was treated that way, so he was rapidly losing weight and he was declared failure to thrive. I now realize that what was happening was he was hitting, um, fabricating inducing illness. I was, I was displaying that,

Dr. Olivia Kessel:

Okay,

Ellie Costello:

Now we see this accusation an awful lot in our families and I can come back to it. But, um, when we've surveyed, um, the group that I found refound my tribe and felt safe in not fine school, um, almost a quarter per quarter, 23% of all family surveys have experienced an accusation of fabricating and inducing illness. Wow. Which is a highly disputed, um, uh, uh, it's not even a diagnosis. It's a, it's a formulation. It's highly disputed. Um, and, um, and extremely rare. So if we've got a quarter of all our women, it's mainly, it is, I dunno, any dads that have been accused of it. But we've got a quarter of our mothers whose children are struggling to attend school, who have kids with maybe invisible or underlying ill health or neurodevelopmental needs, or, um, maybe having a post-traumatic stress response to a car accident, a bereavement, bullying, whatever it might be.

Ellie Costello:

And the a the adults around them, the professionals turn on the family. It's really destabilizing and catastrophic. I mean, it, it drove my husband and I apart it was, it was horrific. Um, and so that all happened from the October of 2014 until the April of 2015. At which point my mum stepped in and said, I found a gastroenter, a private, uh, private hospital. I put you in go. We went to the hospital, heated an examination, and the trouble was that nothing was showing up. In examination, we do an x-ray and we discover a blockage that's so low down, it's actually sitting in his pelvis and it's been there for seven years.

Dr. Olivia Kessel:

Oh my goodness.

Ellie Costello:

And he, so we had other stuff going on. Um, that in hindsight, I now realize I was trying to articulate that the medics around me weren't picking up on as being relevant. And so we, that led to a diagnosis of, um, hypermobile Eli syndrome, a connective tissue disorder, um, which impacts now multiple systems in his body. It impacts everyone differently. But for him it's um, gastro issues, mass cell activation. We've got a lot of immune responses going on. Um, and um, things like he's got for him, it's his, uh, vascular system. So he gets very lightheaded, has headaches and fatigue as well as inflammation and pain. So he, he, he was born with that and he spent nine years coping, bless his heart, and then just went into a complete shop, fell for cliff Edge physically and mentally. And the system response at that time to sort of come back to the landscape at that time was, we had by that point, austerity that we announced in 2010 was starting to be implemented as a local level in 2014.

Ellie Costello:

So support services were, were being cut and gone overnight. So basically what, what Cameron and Clegg announced in 2010 started to sort of roll out in 2012 bit harder in 2014. Um, and then in, after 2014, local authorities and healthcare were asked to make a second series of cups to to, and that's when we started seeing school budgets really hit. And what little was available in the local offer for families went virtually, you know, that's where we saw criteria becoming ridiculous. You know, children can't access camps and they've already made an attempt on their life. Things like that. Yeah. And that's all to do with criteria thresholds. So we kind of hit a perfect storm and then in 2014, the Children and Families Act came in and the Children and Families Act is a brilliant piece of legislation backed by the special educational needs and disabilities code of practice. Another brilliant document. It's not perfect, but it's pretty down. Good. Yeah. And it pulls everything together in terms of equality, law, education, law, children and family law. You know, those two documents together are really, really good. And they are, you know, we do have some excellent legislation in this country. Um, it, the trouble is, is that it's not always followed and that's why people end up in the high court or, or end up.

Dr. Olivia Kessel:

It's so, it's so true. The law is, is good, but the implementation or the interpretation of that law has taken a, a very, um, off pieced, uh, kind of view. You know, so that's a

Ellie Costello:

Yeah, it's a nice way of putting it. I mean, basically I think, I think when you have a country that is, you know, a, a, a global banking crisis, you know, and so what happens is all of that trickles down not in a good way and affects the most marginalized and the most vulnerable. Um, but also you get this kind of boom bust thing going on with, with services. So, you know, we have, um, I went to, um, 2018 I went to, um, the King's Fund is a health think tank, and they do some absolutely brilliant events. Um, and I got one for free cuz at that point I was just starting to work, um, strategically with my local authority cuz they sort of get the parents who have failed, who've, who've failed, who've been failed, and sort of go, can say that to the other folks.

Ellie Costello:

So that's what you end up doing. Um, and um, I got a, a free ticket to the King's fund's, um, past, present, and future of health and social care. And so what it gave me was a real understanding of public healthcare, healthcare and social care from the turn of the century all the way through to Johnson. And what you can see is, you know, a how, it gave me a real insight into how politics and ego, so you get, you will get ministers who want to leave a legacy in the country, either as secretary of state or you know, secretary for healthcare or who, whoever it is, you will get these key green and white papers that affect the political and and cultural landscape of the country. And you'll also get core beliefs that sort of come in within that, that ministerial drive. And not all of those core beliefs are, are kind to people who are vulnerable or disadvantaged.

Ellie Costello:

And so what we can see in this country is some really great, uh, political advancements and sort of advancements to the structure of the public sector. Things like the nhs, public healthcare as as, as a, as a concept was born in Victorian England. So you can kind of see how duty, um, as opposed to charity start sort of being built through this country in terms of public services and duty of care, things like that. But what we've got at the moment is this sort of swing pendulum thing. So the King's Fund talked about, and it was fascinating, boom, bust economics in terms of investment. And what they have found is that when we've got secure index linked investment, which you have in other countries, so they gave the example of Germany and what have you, you can, you then have public services, those working in public services in the public sector who are able to build structures and evolve them because they know that they've got the investment being index linked. What we have here is political footballs across healthcare, social care and education. And what that means is you get loads of piloting loads of innovation, but if you have a change of minister

Dr. Olivia Kessel:

All goes out the door,

Ellie Costello:

It all goes. Yeah. So we, we have budgets cut, austerity is like that on steroids. So what that meant for a family like mine who was on paper, white middle class, university, educated English is my first language. I'm able-bodied, you know, prior to this mess, I had no history of mental ill health. I had no, his, you know, my health, my physical health was good and I had a career <laugh>. So, so what happens is, is that for us with a, a combination of some quite rare and weird and wonderful stuff that isn't available or, or, or under pediatrics within the nhs, there's more, once he gets past a that's not under pediatrics, combined with an ideological kind of political politicized landscape within what should happen in an education combined with financial and economic, um, events. We were a perfect storm. So the whole thing was like a, a perverse not very nice colliding of planets for us.

Ellie Costello:

And so, so I ex I totally understand that we were rare and unusual, but I ended up coming out of it thinking, my God, if it's like this for us, because actually we're not that rare. There are lots of people who have conditions that are perhaps considered fringe or, or even conditions that are mainstream and still aren't, aren't fully accessible or careful. Um, and we've had this sort of huge wave, haven't we, in terms of how we think about children, child rearing, what's best for them families, that sort of thing. My experience was that as soon as we went into education, we came up against a system that was behind advancements elsewhere in terms of how we, uh, think about families, how we respond to children, what do we want for our children out of education.

Dr. Olivia Kessel:

It's interesting. So all of it's interesting because I, I see like, as you say, like there's been a, an evolution in healthcare. Although your, your stories today make make me s shutter to even call myself a doctor after hearing that. But you know, there, the evol uh, there hasn't been an evolution in in education, you know, um, since Victoria Times, you know? Yeah,

Ellie Costello:

Yeah. And, um, and so, so the n h s actually in healthcare is, is is making really great strides. And it has been for about 20 years, I'd say let's, let's let's call it 20 years, you know, certainly making some advancements prior to that. But, you know, if I go back to 1970s hospital wards, it's not a place I'd like to be <laugh>. I mean,

Dr. Olivia Kessel:

Even let's, even when I trained, which was 20, 25 years ago, I mean, and, and I trained in Ireland, they would say, you know, ah, Jesus, don't tell the patient what's wrong with 'em, Olivia, it'll, it'll just upset them. You know, we know what's right for them. That's right. We know what to do. It's best left in our hands, you know, which made it very difficult actually to pass, you know, to, to actually figure out what was wrong with patients. But it's changed so much. You would, you wouldn't have that nowadays, you know, and, but I see kind of parallels in education where there's that similar, oh, the parent doesn't need to know, or we don't wanna upset the parent by telling them that we, we notice this in the classroom or that in the classroom. And there's a, there's a similar disconnect.

Ellie Costello:

Yeah. So consent based education is considered quite avant-garde and, and dangerous by some <laugh>, you know, but actually it's, it's, you know, it makes sense because it builds stronger communities aside from anything else. You actually, if you've got a good relationship with a family that you are worried about or you're not sure about, actually, if they trust you, you are more likely to be able to sort of pivot that family to a better place, you know, with support and sort of, you know, so, so I think, um, but yeah, to answer your original question, so it was 20 14, 20 18, um, by the time we got to 2018, we were in school, full school refusal, we were told, yeah. So 20 14, 20 15 was the sort of healthcare year. 2015 we had some diagnoses. We were starting to try to calm his systems down, his body down. Um, and the focus with the new academic year in the September of 2015 was back to school.

Ellie Costello:

And by this point we were in an early help framework. For those that don't know, early help is a voluntary, um, support mechanism. It's an early part of the, um, social care support system. So within early help you might get family support workers, you might get youth workers, you might get an early help lead, um, different areas, you know, this was, goes back to the King's Fund. Different areas have different offers, so you may not have the same thing in each area, but broadly speaking, early help is like a, a consent based, um, voluntary, um, multidisciplinary team meeting. Okay. Lots of families have it just school and f school and family. But if I'm gonna give any advice, I would usually, um, um, advise that you go in with, bring in, this is your chance to get everyone around the table. So if you've got a special education, uh, a special education on needs, disability, information, advice and support service.

Ellie Costello:

Wow. That's, which is a mouth which Yeah, send send, which is the sort of, there's one in there is, should be one in every area, but it's the, um, free, um, parent support and young person support service if you have special educational needs or disabilities for your child with your child. So an early help meeting is a really good time to actually invite Cindy as to come. You can bring a send advocate, you could contact your family, your, um, local authorities, inclusion service and ask for a someone from the inclusion team to, to dial into it. And this is all more possible with teams now. Mm-hmm. <affirmative>. But an early help meeting is like an mdt, a multidisciplinary team meeting where you are supposed to be at the center in a compassionate containing way. We entered early help not knowing anything about it, not knowing what it was, but we had a brilliant early help lead.

Ellie Costello:

Um, and he, you know, it was really interesting because what happens is the dynamic changes. So if you've got a school who is saying, oh no, we certainly can't do that, and oh that, no, that's not in our remit, that's that, that's that team's remit. What happens is you start seeing things pivot a bit because an early help meeting is minute, so it's officially recorded. Um, and you have action points at the end of it. So on one hand it feels really positive cuz it's like, oh thank God people are actually doing something. And bear in mind we've now spent an academic year chronically unwell, but it was kind of like we were shifting towards attendance cuz we were moving into year five. Now he was very unwell, he was very school phobic by this point. And the reason why he was school phobic is because the way that he was responded to, um, did not hold in mind the physical vulnerabilities and actually the medical trauma that he'd been through. Plus he had a legacy of some low level bullying, which had become high level bullying in year three. So there was quite a sort of, and, and the fact that those around the room aren't able to sort of hold that in mind is really shocking to me. But it's also an indication of how stretched the system is, is every, every teacher has 30 individual stories to try to hold in mind. So, um, as well as, as well as their own. Sorry,

Dr. Olivia Kessel:

Can I pause you here Ellie, just to, to make sure that I'm understanding it. So, so you had this early multidisciplinary meeting before he's going back to school with, with the school, with these other people and it's to try and make, um, a plan for Yeah. How he's going to, um, thrive in school.

Ellie Costello:

Yeah, I mean it took us nine months to open an early help meeting cuz school didn't want to lead it initially. I still haven't unpicked why? I mean, basically in a stretch system while we've got austerity happening, nobody wants to hold something and take ownership of it. So it you so a family. Yeah. So we spent six months with everyone saying, why didn't you only open an early help meeting? And other people saying, no, no, they should lead it. And the other person saying, no, no, it's not me, it's them. And so you kind of go round this. Meanwhile we're being called into unofficial early help meetings where everyone's like, oh, we're coming to the end of an academic year. His results are gonna go down, his progress is gonna go down, his attendance is down, what are you gonna do, mom? And it was kinda like, uh, well I've spent nine months trying to wrangle healthcare for my child as well as trying to line gut you guys all up and none of you want to do anything about it.

Ellie Costello:

So it's, it is the most preposterous situation, but it is an indication of how stretched systems are and that they, at that point, they were rapidly disappearing. So the only help team that had been built was experiencing cuts specialist teaching service was express, um, cuts, sends cuts, you look everywhere, family support, worker cuts, everyone that we had around us youth work cuts. So, so what happens is you then have professionals with massive caseloads. So, so the early help is meant to be a heads around the table brainstorm that's minute and actioned and it's very clear. Um, but we kind of came into it very complex. I do admit that we, we are, you know, complex, but there's families with more complexity than us at a time of cuts. At a time of, at that point the school was saying they had never encountered a child with a mental health anxiety-based disorder.

Dr. Olivia Kessel:

Wow.

Ellie Costello:

And yeah, that's what they were saying. Sorry to laugh

Dr. Olivia Kessel:

There, but yeah, that's, I hear, I hear, I hear that often from parents that yours is the only child like this, which, which isolates a parent even further and it's not true, you know,

Ellie Costello:

Completely. Yeah, I mean, so you know, the, the, the, the, the scariest thing for me was that not only was scales falling off my eyes in terms of my sense of safety and my nation to, to look after me. Do you know what I mean? Yeah. But in my hour of need, this country wouldn't let me down. And, and so it was like a massive like mind melt that this was happening to me at the point that my husband was going through some, uh, job insecurity. So we just didn't have spare bucks to, to pay for it. Um, lots of people don't. Um, and um, it, yeah, it was just a complete mind melt. Um, and they, the, yeah, so coming back around to early help, it's meant to be early and it's meant to be helpful.

Dr. Olivia Kessel:

It sounds like it was none of those things <laugh>,

Ellie Costello:

We were stuck there for four and a half years, which means that it's no longer early and it's no longer helpful. Yeah. So the next level up is where can families go? And actually in the face of austerity and everything else, but also with severe problems with our social care service, there is very little middle ground. So we've got high proportions of families with special educational needs and disabilities or, and or attendance difficulties who are ending up under once they are, if, if they end up at early help at all, they are then placed under a child protection lens. So, so we've got a very risk averse social care offer at the moment. Um, but with the advent of, um, social media and groups like not finance, school, um, information, advice and support being freely available, local community groups for families, um, websites and blogs such as special needs jungle, the information is out there and parents are able to actually become informed.

Ellie Costello:

They shouldn't have to become experts, but many of them do. And so what happens is you end up then once, you know, once you are in an, uh, in a an m d mdt, once you're in that sort of framework where you are, you, you're literally case managing, you are wrangling everybody. And I, me being a doer, I ended up going, oh, don't worry, I can see you're busy, I'll do it. And so what happens is you are then in this position where, so it was, it was weird. It was like a double identity. So everyone really valued me for being a doer and for taking stuff on in between meetings. But at the same take I would come back to a meeting exhausted, distressed and not having capacity to focus on my child and care for my child. And then it was like, mom's very anxious, mum's very worn out mum's, um, you know, mum's not coping and it's kinda like, well if you all did your job, maybe I could get on with being a parent.

Ellie Costello:

So it is this kind of weird landscape, which in hindsight now I look back on it, I now understand what was going on. And because I need to make sense of the history of things, I've sort of got lots of reflections on the culture of this country towards children and families. Thinking about political landscapes, I had to understand what were the drivers that were going on that was washing over my family. And I, I'd never paid attention to politics or public policy or social policy or economics. God, you know, I just liked having friends around for a barbecue and taking my kid to the park. You know, that was it. But once you start sort of, not everybody does this <laugh>, but once you start, so there are lots that do. And so what is incredible, and thank God for things like Facebook and social media, is that I found communities where there were other families who were further down the line than me that could advise me.

Ellie Costello:

And there was a huge amount of, um, information and advice where you then start looking back at what the legislative duty is. You start understanding what should be happening and you tool up and you go back in and you fight a bit harder. The danger with that is that the labels that many of our families get, and it's mainly mums that are doing it, are that they're adversarial. Uh, they're combative, they're difficult, they're challenging, they are vexatious. These are all the sort of phrases that sort of come out if you push back harder. And what, again, this is another sort of example of a stretch system because if we had a system that was funded, staffed, had capacity and resource fully trained, we wouldn't have this rigid response to need. But actually what happens is everybody's just trying to clear their desk or keep it manageable and so and so you, they, it becomes personal then you then bec it's about your family, it's about your personality, it's about, you know, and, and, and people start trying to cover themselves as well. You know, it's kind of like,

Dr. Olivia Kessel:

Well, well it's interesting kind of in the medical situation that you talked about earlier. The doctor couldn't figure out what was wrong. So he blamed you being the anxious, worried parent when the education system couldn't figure out what to do for your son or how to orchestrate it. Uh, okay, it becomes your problem again. So it's a, yeah, it's a, it's a way to explain something that is unsolvable, it sounds like both in healthcare and in education to put the blame back on you because now I can put you in that little box and you're just difficult. And I think, you know, um, a lot of parents hear that and a lot of parents are, you know, punitively corrected for not sending their children to school and the child is also for behaviors in school, punitively put in isolation, put in detention. Um, it's a very punitive system. Um, how as a parent, um, have you learned to cope with that and deal with that label and how could you advise other parents in terms of what they can do if they're experiencing it right now?

Ellie Costello:

Um, so I'm quite a law abiding, uh, you know, do-gooder. You know, I don't like coloring outside the lines. You know, I, i, I don't like not fitting, um, I'm not a rebel <laugh>. Um, and um, it was really hard to sort of adopt that mantle. And so for quite a long time I didn't, I I didn't identify as a parent carer. So in local areas, for example, there are parent carer forums and they are there for, they, they are the sort of, that's where I started my strategic work was with them. Um, you know, as I said, they bring in the parents who sort of start complaining and go, can you tell it to the rest of the people at the back please. Um, and so parent care forums are just collections of, of, of those parents in each local area. They're a strategic partner.

Ellie Costello:

So they're recognized by healthcare and local authority services as the go-to place for family voice. Um, and it's a really important role because we do actually have to place, and this is where healthcare is ahead of the game. We do actually have to place users at the center of how we review our services. Absolutely. And the users of education are children and families and they're not at the table. So, um, but I didn't go to the parent care forum because I just identified as a parent, you know. But what happens is, is you get sort of othered. So you're a disabled parent, you are an foreign language parent, you are a, I dunno, single parent. There are all of these different sort of things where you get othered. Um, and what that, that can be problematic in two ways. Number one, you are only then talking to the families who identify in that way.

Ellie Costello:

So they found that group. So then you don't know who you don't know. And, and those voices are even more silent, but also the, it, it then makes it into small issues, right? So it's just that small group of families over there. We, it's not a systemic societal issue, you know, it's in fact it's just that small group of families and that's really comfortable and palatable for the cordial of power. Cuz it's just like, oh, it's only 11% of the population. I've just plucked that out the air. But yeah, you know, especially educational needs and disabilities is represented in persistent absence data at more than 32% now. And that's those that we know that's families like me who have got a, who have got a child whose child has been identified as needing additional support educationally or socially or with healthcare. So, and I didn't want to adopt a parent carer.

Ellie Costello:

I was kinda like, it was really weird. So what happens is you suddenly start sort of coming into words that you never thought you'd were, where your identity, you either choose to take it on or you shoved away or you ignore it. Um, it's been really interesting this journey because I've really had to face my own implicit bias towards difference. Yeah, nobody wants to be different, but actually our family doesn't fit, therefore we are different. We're not normative. Um, I've really had to challenge my own implicit bias towards disability. What, how did I think of disability? Well, I could see it or I could hear it. I knew a disabled person cuz I could physically spot them. Actually know how we think that in law disability is any condition that is chronic and pervasive and impacts efficacy for more than six to 12 months. So once you get into beyond 12 months of a chronic condition, it's considered disabling to your life and therefore brings entitlements with it.

Ellie Costello:

So again, going back to the law, it's really clear. It's really clear. The trouble is, is that we think of disability and we think of high needs as just a small group. And actually we all have needs. So every single human being has needs and throughout a lifetime, all of us are likely to have acute and severe needs at some point and be disabled by something for some reason. Some of us may heal from that, some of us may be left with that. The point is, is that needs ebb and flow across a lifetime. We don't expect them in this country. We don't plan for them and we don't have the services that for them. And we certainly don't think about children's needs holistically. In fact, from the minute they enter education, the drive seems to be to get children to behave in a way that is palatable to adults.

Dr. Olivia Kessel:

So

Ellie Costello:

True in order to learn the curriculum. So there is no flex to embrace diversity, difference, joy, sorrow, distress, anger. None of that is allowed in our systems or in certainly not in this country. You know, we have a legacy of children are seen and not heard. That's very much part of British education. You can't, can't sort of ignore the desire to line up children in rows and get them to be silent and, and, and, and uh, respect the adults in the room. It's absolutely part of this country and who we are. But so there's been, it,

Dr. Olivia Kessel:

It's also sim it it is also similar in medicine that doctors really expected. I tell you what to do, you will listen to me, right? You'll take your pills and you will listen to me because I'm God. Right? It's, it's so similar to me in my mind. Um, and that shifted now, now with Google and with everything, people become their own experts. They're empowered now. You know, it's about activating the patient, getting them more empowered. You see that the impact it has on their quality of life, on their health outcomes, right? That empowerment, that activation actually equals a less costly individual on the system who actually does better. Yeah. And the same, I think, you know, there's such a parallel of education where kids are expected to, you know, listen to what they're, listen to what they're being told. Sit, be still be quiet. Otherwise you're going into isolation.

Dr. Olivia Kessel:

Otherwise you're getting detention. None of it has been proven to work. None of it does work. You know, so it's time to think out of the box. So how, you know, you are obviously impassion and, and, and you're working on this, but how, how do we, how, how does this revolution and how are you, uh, envisioning this revolution in education or how is it going to, uh, I think already you've mentioned the fact that forums are, are making this information more available. There are tools and, and things out there. So it's, it's starting similarly to how it started in medicine and then it's that ball needs to start rolling. I am gonna leave you hanging this week with that question. How does the revolution in education happen? And I wanna challenge you to answer that for yourself. How can we start that ball rolling and changing the way we look at education? Thank you. Send Parenting tribe for listening. Tune in next week where we will look at the revolution of the education system by unpicking some of the current law and order is in school currently where behavioral escalation policies can lead to isolation of children as young as six. I frankly was shocked that this is happening in the present day and not in Victorian times till then wishing you and your family a happy week ahead.