You Don’t Have to Fight Alone: Navigating SEN Support for Your Neurodiverse Child

Kate: 00:01:44

Welcome to the ADHD Women's Wellbeing Podcast.

I'm Kate Moore Youssef, and I'm a wellbeing and lifestyle coach, EFT practitioner, mum to four kids and passionate about helping more women to understand and accept their amazing ADHD brains.

After speaking to many women just like me and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with adhd.

In these conversations, you'll learn from insightful guests, hear new findings, and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm, and purposeful life wherever you are on your ADHD journey. Here's today's episode. Welcome back to another episode of the ADHD Women's Wellbeing Podcast.

I'm here, as always, Kate Moore Youssef, to ask the questions, dig a little bit deeper, and learn and explore and get curious about this whole world that we find ourselves in. And today is no different. I have a fantastic guest here.

Her name is Rebecca Gray, and she has trained to be a SEN advocate, and she's gonna help us understand this system, this SEN system that we find ourselves in often with our kids that sadly, we have to navigate with no training, no tools, and we just have to kind of find ways to advocate for our kids. And often we don't even know whether we are doing the best thing or the right thing for our kids.

So I'm really happy to break all this down with Rebecca today. So welcome to the podcast.

Rebecca: 00:03:18

Thank you. Thank you.

Kate: 00:03:20

Yeah, good to have you here. So, I mean, I was fascinated when we first got in touch because you were telling me that you trained or were training to become a SEN advocate.

And I said, oh, I've never heard of that before.

And I know, like, as I just said in that intro, that as parents, we just find ourselves navigating a system that feels quite different in different areas or boroughs or counties that we find ourselves different countries for sure, because this is a global podcast. Some teachers are really open and forthcoming. Some teachers aren't. Some schools are very helpful. They have different. Everything's very different.

Like you said, it's very new, all of this. So perhaps you can tell us a little bit about what is a SEN advocate and how did you become a SEN advocate?

Rebecca: 00:04:04

Sure. So SEN advocate is a special educational needs advocate.

I work directly with families to help them navigate the system and try and get the support that's right for their children.

Almost always, that is via an EHCP in terms of my route to it, like a lot of people, I started through my own experience, I have two autistic ADHD children. Both of them were in mainstream school. You know, it was our.

We just always thought that our children would be in state schools and never really thought otherwise. And they started to experience the kind of problems that a lot of neurodiverse children experience in schools.

Became first apparent in our son, who just seemed to be becoming more and more and more anxious at the prospect of going into school. It came slightly later with my daughter.

She is much more typical of an autistic ADHD girl in that very often they can get through primary school okay because it's a relatively contained, nurturing environment, and then they get to secondary school and just absolutely drop off the cliff, which is what happened with her. And this is a horrendously common experience.

She, age 12, was suddenly not quaking at all, suddenly incapable of having friendships, terrified of thought against school and literally suicidal. And, you know, I remember going to see a GP and her saying, very sad.

It's not uncommon to have 12 year olds who are trying to end their own lives because they can't cope with our school system. It's a sad indictment.

Kate: 00:05:44

Oh, my God. Yeah. So terrific to hear that.

Rebecca: 00:05:48

Yeah, it's, you know, quite a few years past it now and I can sort of say it without. Without falling apart. But a lot of parents, I'm sure, will either be going through that right now or will know exactly what I'm talking about.

So I had to work out how to get them the support they needed.

And the first time I did that was with my son, trying to go through the EHCP process so that I could get him a place at a special school that he needed. And.

Kate: 00:06:16

And can you just explain, in case anybody doesn't know what EHCP is and what it stands for?

Rebecca: 00:06:21

Tory government in, I think,: 2014

On paper, they're meant to bring together the special educational needs, the health care needs and the social care needs of a child all together into one plan, so that no one is working in isolation and that you can have children with very, very complex needs that can span all those areas and all those professionals are working together to produce a plan of what that child requires in order to be able to thrive, to put it mildly. In practice. That's not how it tends to work. The health and the care, the legislation around that is very, very shaky and very difficult to enforce.

So almost always or Very commonly they tend to focus much more on the special education needs. So the needs are described in part of it, which is called Section B. For those needs to be met.

This is what the child needs are in a part called Section F, and it's a legally binding document. There is very clear legislation around it. If that legislation was followed properly, then it should be a very smooth and straightforward process.

But as you can imagine, it is catastrophically underfunded, which is why local authorities are in such quickening debt.

So to give you an example, in order to get one of these, and they're very difficult to get, and anyone who has read in Lisa would telegraph all the times that these are a golden ticket. I couldn't be further from the truth. You have to apply for your child to be assessed.

So the first stage is that you have what's called an educational health care needs assessment, and that is meant to determine whether or not the child needs an ehcp. So for my son, like vast numbers of children in the country, the local authorities simply said, no, he's fine, he doesn't need me.

That's called a refusal to assess. That's the first hurdle that parents tend to face at that stage.

Because I knew a little bit about it, I knew that we needed help, so I went to a SEN advocate and worked with her.

Brilliant SEN advocate called Emma Hopkins was overrun with work, unsurprisingly, but she was really great and she basically helped us through the whole process, securing the support that my son needed and getting him specialist place. Having worked with her, I was then able to do the same for my daughter. And that time I was able to do the process on my own and.

And God help me, for some reason, I don't know why, I'm autistic and adhd, and it turns out one of my special interests is then law. I don't know why, it just is.

And I just found myself becoming more and more and more fascinated and kind of helping out friends and other people in sort of informal ways, reading more and more and more about it, understanding more. And a friend of mine is a specialist teacher and she said, you should do this for a living. You know, you're really good at this.

And I suddenly thought, yeah, I will. So I. There's not a formalized route to becoming a SEN advocate, which is not as it should be.

My colleagues and I wish that there was a regulatory body, we wish that there was an accredited training course. We'd happily sign up to it.

But one of the leading SEN charities called ipsi have a brilliant three sort of level law course, specifically in Sen law and in all the different kind of facets of how that plays out. And they're quite detailed and quite involved.

So I did all of those and then I started volunteering with a brilliant charity called sosn, who I still volunteer with, volunteering on their helpline. And I also just started helping out some families for free. I said to them, I'm training, you know, I'm not going to charge you.

This is on the understanding that I'm still training because really it's about gaining experience and seeing different kind of scenarios that play out.

Kate: 00:10:23

Yeah, I mean, thank you for explaining all of that.

And it basically sounds like you're the mediator or the broker or like you say, that lawyer that comes in and because as parents you are navigating a system that you never asked to be part of, that you don't even know exists if you're not having to navigate it.

And like you say, the lack of funding, you're up against so many walls that if, you know, it sounds awful, but if you kind of like have to play the system a little bit to be able to know how to get that funding and how to get that support and it shouldn't be the case. I mean, I always say this is, I know this sounds very sort of like binary, but it's the system, the education system that needs changing.

It's not our children, it's the fact that we're evolving as humans and the society is evolving and the education system is still stuck in the dark ages. And wouldn't it be better instead of having to do all of this is to start making top down change? To me, I mean, I'm not, I.

Rebecca: 00:11:22

Know and there's many, many who agree with you and I, I certainly do.

The number of children we're seeing, and it is between 1 and 2 million children now in England, there are different systems in, in Wales and Scotland. So we're specifically talking about England.

And it's a, you know, it's a really sizable proportion of school age children who, for whom our current education system quite simply doesn't work.

And it seems to me a very, very strange response to regard them as the problem rather than the symptom as you said, of, you know, as I see it, we're seeing the absolutely inevitable results of changes to the education system that made it far less inclusive, paired with all the incredible challenges that teachers face. The recruitment crisis in teaching, it all sort of created this perfect school.

And the idea addressing that Instead of sort of trying to find these increasingly convoluted ways of, you know, fixing around the edges. It's, it's, it's not working. Not working.

Kate: 00:12:27

Yeah, I agree.

You know, and we've also got to think about nervous system health, and children are operating from different nervous systems than we operated from and our parents and grandparents did. You know, we've had Covid that was catastrophic for children and teenagers, mental health. It ruptured the foundations of education.

And we can't dismiss social media, we can't dismiss the usage of phones. It's like it's a complete epigenetic, societal perfect storm of so many different factors.

And the only thing that hasn't changed is, is the education system.

And that's what I have a problem with, because we can't take away all these different things that have been thrown into the mix, like you say, or just like the funding for teachers and the crisis that teachers are finding themselves in.

You know, I've interviewed quite a few different people from the education sector on the, on the podcast, and it seems that there's thankfully more neurodiversity specialists who are working either with schools, with educators, with parents, with children. We're getting a better understanding within the sort of the education field. But for parents, we need that advocacy.

And I think what you're providing is fantastic, because if you're exhausted, overwhelmed, you're not sleeping, you've got children who are facing distress and challenges, and. And then you've got to fight, fight, fight. I hear this all the time from women. You know, women especially are having to fight.

They're having to fight for their health. They fight for their support, for their validation, just to have that recognition, all of that, and it's exhausting.

Rebecca: 00:14:06

It's hundreds of hours of your time. You're absolutely spot on when you say that.

You know, if your child is in crisis, and I would imagine there are plenty of parents listening to this who are at that stage right now.

It is so overwhelming and so stressful and so distressing, and the way in which the organizations and the people who are supposed to be there to help, and I'm thinking specifically of local authorities, I have, broadly speaking, I have huge sympathy with schools and the stress that they're under, and I think the miracles that they're expected to perform is just totally unrealistic. But it is also the reality that there is great variety in terms of understanding of neurodiversity and level of support that's offered to parents.

You've got parents whose children are in crisis. The parents therefore are also in crisis and they're reaching out to the very people whose job it is, whose legal duty it is.

And that's really where I sort of really hone in. Their legal duty is to provide the support that those children need.

And yet far too often they're being outright lied to, or if not outright lied to, they just simply are not being given all of the information. And you know, you reach a point where children are kept in schools that are incredibly damaging to them.

And the idea that a parent who's going through all of that has then also got the bandwidth to become, you know, an expert in said law, which they should not have to do, that is not their job. And I say this all the time to parents, parents say to me, I feel so stupid, I feel naive. I can't believe I trusted that person.

No, you did exactly what you were supposed to do. You put your trust in people who told you to and who you are opposed to. You followed the system as it set out to you.

There's nothing naive or stupid about having trusted that system. I'm just so incredibly sorry that this has happened, but it's absolutely not the parents fault at all.

Kate: 00:16:14

So who do you directly liaise with? Is it the local authorities? Is it the head teacher? Is it the send department? I guess who is that person that kind of sees you, goes, oh, no,.

Rebecca: 00:16:27

I mean local authorities, okay. They definitely don't love SEN advocates. It's this incredibly annoying thing called pointing out the law. Really annoying thing of going.

The thing is though, that's not what the law says, is it? And that means that you aren't doing what you're supposed to be doing.

No, I, I so yes, always local authorities, sometimes for schools, probably from experience, a lot of schools are very wary of SEN advocates, perhaps because they've had certain advocates come in and be quite aggressive with them. That's what I've been told by sencos in the past, that certain advocates have come in and be highly critical.

I always try and reassure schools from the outset that that is not my aim, it's not my intention. I always think, okay, who is this battle with? Very rarely is it with the school.

The school is very, especially if it's a mainstream school, their hands are tied in terms of what they can really offer a child who needs, especially if it's a child who just isn't coping in mainstream school and never will.

But give them all the support in the world and they still cannot cope with the sensory environment, they cannot cope with a large building, especially secondary schools, which are full of noisy, smelly, you know, they simply can't cope with it. And then all the other reasons that they can't cope to.

I always try and say to schools, my fight is totally not with you, but what I do have to do, and this can be very difficult, is try and persuade a school that is currently saying they can meet a child's needs. So you've got a child in crisis. Very often that crisis is presenting at home rather than in school because that child's in school.

Too often what happens is that the school, school says, no, we can meet needs, they're fine here.

Now, I don't know where that pressure is coming from for them, whether it's coming from the local authority, you know, but if the school maintains that position, then it makes the fight much longer and much, much more difficult for the parents to get their child the support that they need. So quite often I have to go and have a meeting with the school to try and persuade them that actually, look at all this evidence.

If we read the reports that there are on this child, we look at how they're presenting at home, they're not taking care. That can be a really difficult conversation because a school can hear that as criticism that they specifically have failed.

So I try to always frame that as, this is not you, this is a mainstream school system. It is not this individual school, it is the entire system in which you operate, which you cannot change.

So, yeah, I talk to schools quite a lot, tends to be local authorities and then the send tribunal itself, which is the appeals system. So I communicate directly with them quite a bit as well.

Kate: 00:19:28

And are you noticing a difference with private schools? Because do they still have to deal with local authorities with the private schools is all. Does it all happen within house?

I guess if it's private, no.

Rebecca: 00:19:41

No. So an ehcp, the body responsible for those, is a local authority. A school can be sort of largely uninvolved.

A parent can apply for an EHCP with or without the school's backing. It's good if you do have the school's backing, but if they really don't, you can go through it. It's just longer and harder.

With private schools, the legislation is slightly different, this thing called the Children and Families act, which is the legislation underpinning the entire EHEP and SEN system. And there's a couple of other. There's SEN regulations and there's the SEN code of practice.

Private schools are not beholden to those in the same way that state Maintained schools are.

But nevertheless, I work with plenty of private school parents and children and fundamentally the conversations that you're having with the local authority are the same, because the legislation around an EHCP is the same for a child, regardless of where they're educated. It doesn't affect the child's rights.

Kate: 00:20:40

Yeah. So, I mean, if someone's listening right now and they're thinking, this is, you know, this is what I need.

I mean, I know it's hard to say, but is this, is this. What kind of costs are we looking at here? Because that can also be very prohibitive for people. They're thinking. Yes.

And I know you mentioned about the SOSNO and charity, which sounds amazing. So I'd like to give people options of if, because I, I know what it's like to have to advocate and I don't want to kind of.

This is, you know, if only if you can afford it, we. Let's give options.

Rebecca: 00:23:57

Yes. Okay. In terms of kind of costs involved in working with me. So I charge flat fees for certain bits of work.

So, for example, if I write a grounds of appeal, which is a big document that involves legal arguments and so on, and it probably takes me between 15 and 20 hours plus, that's the biggest bit of work I do. And that is my sort of biggest one off fee, outside of literally representing a family at a court hearing. So that I charge £995, which is a lot.

It is a lot. I do other sort of flat fees. Like I will write an EHCP application, I will go through a draft plan and amend it.

But a lot of the work I do is emailing schools, local authorities and so on, and that I charge at an hourly rate, which is £75. I'm always mindful that parents are paying themselves and I sort of try and keep their costs as low as I can.

I mean, if, for example, it's an email that takes me two or three minutes to reply to, I'm not going to charge for that. You know, it's more.

If it's an email that involves me looking up really specific bits of legislation or something, that's quite a tricky argument to have where I really need to give it some thought and compose it properly.

And the same sort of thing, if I'm advising a parent on something and it's something quite emotional or they're quite stressed about, then it's going to take me a while to, you know, think how to answer that properly. But in terms of other options, I mean, first of all, I do offer Discounts to people, for example, who are on universal credit.

I mean, that's, that's a discretionary thing. But I don't like turning people away. I don't, you know, it's, it's sort of in the nature of a certain advocate to want to help people.

So I do have some families that I work with that I offer quite, quite substantial discounts to and I try and keep their costs as low as possible because I'm just aware of what, you know, they're all slightly straightened means.

Kate: 00:26:00

Yeah, I don't think, I mean, listen, you're doing an incredible service. And we don't judge doctors and we don't judge dentists and lawyers, like, who are helping people. Like, you must put a fee to what you do.

And often I can only imagine when the outcome is, is positive, it's life changing and it's life saving. So I, you know, I, I hear that you're trying to sort of like, you know, justify.

I think what you do is incredible and you should never have to justify because it can really change the trajectory of someone's life and the family's well being. And I think it's important we state that because as a whole, I think as women we often have to sort of apologize.

Apologize for doing our job and apologize for charging. And you know, especially in this community, you know, it's, it's a growing, it's a growing service.

And it's weird, you know, if you look back 10 years ago that these, many of these jobs, including mine, wouldn't exist.

But we're here to advocate and we're here to help and direct and signpost and support and all these things that so many parents, you know, I hear from, so many people listen to this podcast and they were, they were flailing.

They were like, I didn't know where to go, you know, and that's the reason why I have conversations like this is because I want to bring to the forefront this information that could take hours to find and you still wouldn't be able to get all the information. So I think first of all, you should own exactly what you do and be very proud of it.

But I just, I also think it's great to have other options as well. And I'd love to hear a little bit about the charity that you volunteer for as well.

Rebecca: 00:27:30

Yes. So there are some amazing charities. The one that I volunteer with is called sosn. It is brilliantly run. They have various different services.

So I volunteer every week on their helpline. They have a helpline that runs every day.

They always say on their Facebook page when it's open, but it is, you know, it's open during term time, at least five or six hours a day. And we just answer calls from parents who are calling up with all kinds of, all kinds of problems.

Sometimes it's a child who's ADHD who is being unfairly excluded from school. Very, very often it's about EHCP and they've hit a wall and they just don't know what to do.

Sometimes they are quite specific issues that you can say, okay, yeah, no, this is what you do. And then they can go and do that.

Other times it's a bit more complex and a bit broader and it's more than I or one of the volunteers can answer within a sort of 20 minute phone call. And if that's the case, then they can book a one to one zoom call with either a really experienced sen advocate or a sister.

We have this incredible solicitor called Eleanor who's just, you know, she's what you kind of, you aspire to be. She's just so sort of, no, this is how it should be. I just, I would love to be able to argue like she does, but we do other things as well.

There's a brilliant thing called the Pap Letter service. So that means Pre Action critical letter, which is the first stage, without wishing to get too technical, it's the first stage of a judicial review.

Now a judicial review is a legal challenge to a decision that a public body has made. A full judicial review is really expensive and, you know, can be just impossible for most people.

But the Pre action protocol letter is a legally worded letter that is sent by the charity to Munshalink Local Authority and, and it's challenging a reasonably straightforward breach of the law.

Like, for example, they haven't issued a draft DHCP in the legal timeframes or they are not providing transport for a child who should have it, or they are not providing like occupational therapy or speech and language therapy that is written into plan, things like that, where if they are sent a very clear legal letter then actually it can sort the problem out pretty quickly. So that kind of can be incredibly helpful. We write grounds of appeal, we check through EHCPs.

There are costs involved in these, although they are much, much, much smaller than say a solicitor's fees and usually an advocate's fees. And also they never turn people away on the basis of cost.

So if someone is really, really struggling, then we have a conversation and we try and work out something that is Affordable. So it's a really, really brilliant service and they have, you know, a lot of, a lot of volunteers who are incredibly experienced.

Kate: 00:30:38

Sounds incredible. Really amazing. I'll make sure we link, we'll link to it in the show notes. So we've got all the information there.

I mean, what, what kind of outcomes have you seen since through the work that you've done from sort of almost, you know, I don't want to sort of like Disney fy it but you know, from, from a moment of crisis and then you've seen a positive outcome and you've seen that play out.

Rebecca: 00:31:01

In practical terms, it's, it's, it's so brilliant. I can't. Because you really do. It's very hard not to care about the children. You really, really do want to, you really want to help them.

So, so I've just had child who's in year 10. He has always been in mainstream school.

He's a really good example of a child who has been repeatedly failed by the system, should really have been in a specialist school since year three, but has been kept in mainstream school by local authorities. The parent didn't know how to challenge those decisions. That's a parent, for example, who said, I feel so stupid.

And I said, no, you are not the problem here, you absolutely aren't. So he was in a mainstream secondary school. He is fully capable of getting 8 or 9 GCSEs and yet he was on track to fail all of them.

He had had two documented suicide attempts. His, his mental health and his self esteem were absolutely through the floor. He was not doing anything other than existing.

He was not progressing in any area really. And so we went to appeal following annual review, which is one of the stages you can appeal.

And it was a hard fight, but we found a wonderful school that was small and nurturing and could meet his needs.

And through a pretty hard dog fight with the local authority and the tribunal system, we got him a place there and it's fully funded by the local authority and he started there. And to see him now in a, you know, it's not a kind of, you know, it's not like a light switch and suddenly he's totally fine. It'll be.

This is a child with years and years and years of school based trauma.

It'll take him a long time to recover from that and to have any trust in the school, but you can see that he now is on a path to being there as opposed to just being eroded further and further and further. So when you get that Kind of result and the child gets the school placement that they need. That's really amazing.

Kate: 00:33:04

Yeah, that sounds very familiar. I know, I know someone that's gone through a very, very similar situation.

I mean, do you think from a. I don't know, understand enough about specialist schools, but do we need more of them? Because they seem very few. Yeah. Okay.

Rebecca: 00:33:21

And the trouble is that because there aren't enough state maintained ones, there are many which are excellent and I think it's, I could imagine that someone hearing state maintained specialist school might imagine something that is not as well run as it should be, that doesn't have all the resources. That's not true.

Another example of a great recent result is a non verbal 4 year old with the sort of cognitive age of it toddler who was on track to being placed in a mainstream school and has just been placed in a maintained specialist school and that will be, that will save him. It's, you know, it can't overstate the importance of that. But there aren't enough maintained specialist schools.

So what has happened is that private providers have stepped in.

Now I'm not, you know, the individual schools are great, brilliantly run, but because of how they're operated, they can charge vast, vast fees to local authorities.

Genuinely, I don't understand where that money goes because my son goes to a special school that costs about a quarter of the price that some comparable schools are charging. And when I look at what he gets and I look at what children I know in those schools get, there does not appear to be a huge difference to me.

So because there's not enough state run specialist schools, private providers are now stepping in and as we know, sometimes those are run for profit.

It's not to say the individual schools aren't really good and we do need those kind of schools, but it's exacerbating this funding crisis because it's not enough. That's state run.

Kate: 00:35:10

Yeah. I mean it sounds like we just haven't found almost like that middle ground that we need.

Like it's sort of like from one extreme to another and there's no, I mean, I guess what we're hearing a lot of is like, you know, people coming out of formal education and being homeschooled and we're hearing that more and more. And then there's, from what I've been seeing, there's different ways to be homeschooled.

So it's not just being homeschooled by a parent, there's ways, you know, like small tutor groups, online groups, online schools. Do you help advocate for funding for that as well? Because it sounds like a very good option for many children.

Rebecca: 00:35:43

Yes, yes, I've got several families I'm working with at the moment. It's called theotis, which is. Well, there's two different, there's two different forms.

So as you say home education, there's something that's known as electively home educating, which is where the parent has made a conscious and deliberate choice. They feel that for their child home education is the right option.

That is different to something that's called iotis, which is called education, other than in school.

What that means is that for that child it is not reasonable or possible for them to be educated in a school environment, any school environment, even an incredibly small, very nurturing setting for them. It is better to be educated otherwise.

So like you say, that can be a tutor that comes to their home because the only place where they can maintain that sort of calm, alert state, they need to be able to fully engage with their learning is in the home. But it's a package.

So they might have tutoring the home, they might spend a number of hours a week in an alternative provision, which very often these are sort of outdoor environments, sometimes they farms, they're in forest school settings and they're learning all kinds of skills that were often basically addressed sort of healing the trauma that they've experienced in school. It can take all sorts of different pathways.

So you're sort of building up a package of provisions that mean that that child is getting their education, but they're also getting the social interaction that they need, they're getting the sensory input from movement that they need and so on. It's not an easy option for parents because as you can imagine, you know, it can involve your child being in different.

It's very difficult to have a child who's doing that and also say do a full time job. Huge. I mean, I honestly don't know. I'm trying to think of more than one or two send families where both parents work in office locations.

At least one of the parents, very, very often the mother is either not working outside the home or is self employed and so has that kind of flexibility. But yeah, iotis can be really, really life saving for some children.

Kate: 00:38:00

We don't know though those things exist, do we?

So like I said at the beginning, it's this, it's understanding our children's nervous system and they may want to learn, they might have a thirst for learning.

But the way, like you say, the trauma that they've endured at School and the way they've been told that's the correct way to learn and to sit and to process just totally dysregulates them. And no one tells us that.

We're just told that, well, if your child doesn't do well at school or is in trouble at school or can't make friends, there's something wrong with your child and the language, everything has to change. Do you have parents that come to you and go, I don't even know what my options are?

Rebecca: 00:38:38

Yeah, yeah, very often what I usually do, I mean, first of all, I have a 20, 30 minute phone call that's. There's no charge for that, just to try and get some of the background and understand what's going on for them.

And then what I usually suggest is that we have a zoom call for an hour and that they send me everything they've got about all the reports, emails that they've had with school, anything that can help me get a really detailed understanding of what, where that child is right now. And then we talk about what the pathway forward is. So, yes, sometimes they just say, I don't know what to do, I have no clue.

And so as part of that zoom call, I explain what all the different kind of options are. They can either go away and think about it or we can decide together how we're going to go forward.

Sometimes parents will be quite, they will be quite fixed on the idea that if their child goes to a specialist school that that will mean that they won't get, it'll compromise their education, that they won't get the same number of GCSEs. And so sometimes it's actually explaining a bit about what specialist schools are like, what the range of them are like.

And actually, you know, sometimes I will research schools in their area and suggest that they go and visit some of them. It's trying to help parents see all the different options that there are and then understanding the route to getting there.

Kate: 00:40:06

Yeah, I mean, I'm listening to you and I'm thinking, you know, I've got two brothers, I'm in between and they were both diagnosed as kids talking. You know, one brother's nearly 50 and one's nearly 40, so we're talking a very long time ago.

And even at that time, I remember my mum, she did advocate and try her hardest with what was available in the late 80s and early 90s with an understanding of what ADHD or ADD as it was called, perhaps some dyslexia. They didn't even know. My brothers probably Went between them to 10 different schools, maybe more.

They were kicked out of schools, both of them didn't finish, you know, academia, didn't go onto further education. They have struggled, you know, really struggled from a self esteem perspective.

And I would say, you know, I've never had this conversation with them, but I would definitely say they've got sort of trauma from their education.

And I look back and I think, you know, so many of us as parents now are trying to almost fix the version of ourselves, you know, through our children that we didn't get.

And that's why we get this fire in our belly, because, you know, I get chills even thinking about it because we didn't have this help and now we have a much better understanding and we understand things through a completely different lens. And this system has to catch up. And if it's not going to catch up, we're going to have to make it catch up.

And I'm sure that there's many, many parents that are so grateful for your help. And you think no one's potential should be suffocated and pushed to one side.

Because as we know with neurodivergent kids, they, they're often brilliant and they have special interests and if we can just sort of hone and nurture their brilliance, you know, can you imagine how many kids. And sadly, we know the criminality rate, we know the unemployment rate, we know the suicide rate, the mental health rate, the addiction rate.

It's crazy not to be addressing all of this from education at an early.

Rebecca: 00:42:05

Age and that what's so disheartening is to see this government and the former government putting what are clearly inadequate halfway measures in place. So what we're hearing a lot from the government right now is a focus on mainstream education. Now, in one sense, yes, absolutely.

Mainstream schools could and should be far more inclusive than they are now. But in order to achieve that, it's going to require, as we said, overhauling the curriculum.

It's going to require massive ongoing training of staff and quite a big mind shift. And I'm not being critical of teachers.

They're under, you know, they're being asked to do so many things at once that, you know, they're only human, for goodness sake. But we need smaller class sizes, we need more schools.

You know, just the, the sheer investment in the infrastructure is so massive that it's hard to know how that can be achieved. But it certainly won't be achieved by creating specialist places within mainstream. Because for some children, yes, that will be helpful.

For some children, that will be right.

nvironment in which there are: 1200

It's. All it's going to do is it'll deny access to the kind of help that more and more children need and the problem will not go away, it will only grow.

It's. Yeah, it's disappointing, to put it mildly.

Kate: 00:44:17

It is, it is. And, and I've, I've got a daughter who's got an ADHD and dyslexia diagnosis.

She's also in year 10 in a comprehensive that she's actually very happy in.

She's got lovely friends, but we went through and had, you know, really significant sort of dyslexia assessment and, you know, she's, you know, quite challenged by it and the school have just offered the bare minimum and unfortunately my daughter doesn't want to do anything that's going to sort of make her stand out. She's at that point, you know, socially. That's embarrassing. That's embarrassing. Don't make me do that.

I don't want people to think this, even just me saying, just put a pair of, like little, you know, looper earplugs in while you're sitting in an exam hall. No, no, no. People might see him like, sweetheart, they won't see. But everything is embarrassing in year 10 and it's hard.

Rebecca: 00:45:07

Yeah, well, this is it, especially when you're talking about teenage girls and neurodiverse teenage girls who are aware of their difference and yet the only thing they want is to not appear different. And I'm, I'm certainly, I'm speaking from my own experience and I'm sure you are too.

Even minor adjustments actually are completely counterproductive because she will be so anxious.

The idea that people are noticing these differences, that she will be the emotional dysregulation that will cause will counter any benefit that, say, ear loops might bring her.

And it is hard enough to secure good send support with an EHCP in a mainstream school because fundamentally a teacher still has got a class of 30 other kids to deal with that. You know, if your child needs to be taught in. In a way that is right for her kind of neurodiversity.

So in the case of your daughter, she's dyslexic, she will need a differentiated curriculum, she will need the learning materials being presented to her in a different way. She will, therefore, she needs someone to prepare those materials in a different way.

She will need someone to check that she has understood what is being taught to her. And so on part of 30 kids with one teacher and maybe one TA, how are they supposed to do that on top of everything else they've got to do? They just.

They're not provided with the resources and they're certainly not provided with the funds to do it. And yet, like you say, the real. The real person who's missing out there is your daughter. And it's all sort of.

It's all kind of brushed away under the banner of what's called ordinarily available provision. But as you've seen, in practice, it's not legally enforceable. There's no way of compelling a school to provide it.

And very often, even if a school has got all the right mindset and the best will in the world, they physically can't provide it. So it leaves children like your daughter without the support they need.

Kate: 00:47:14

Yeah, I mean, it's crazy. Just to give you an example, she's doing food tech G, gcse, obviously loves the practical side, like, loves it. She's great in the kitchen.

But anyone that's ever been part of food tech gcse, there's a lot of theory as well, and it just blows my mind. It's like, just give. Let it be practical for them. It's like something like 60 theory.

So I spoke to her teacher and I said, listen, she's quite severely dyslexic and that's going to be a really hard, you know, thing for her. Can she speak the examination? And she said, well, if we get her a transcriber, I think that's what it's called.

She has to then tell them where to put the full stops, the commas, the apostrophes, all of that. I said, well, that's where she struggles. She struggles with all of that. So for her to then do that, you know, in an auditory way, it's going.

She's going to.

So she said, actually, she's better to write it out in her dyslexic way because then they'll bear that in mind because they'll see that she's dyslexic and they won't flag up those things from a language perspective. But I say but then. But she struggles to process her words onto paper. So you're in this like conundrum of what's better.

Use the, the kind of, the option that they're giving her or do the thing that she finds hard but also makes her feel a little bit bad because she knows her language and her punctuation is a struggle for her.

Rebecca: 00:48:37

But actually what she might find helpful is using a laptop.

And there are various programs that are designed to help dyslexic pupils in exactly the kind of situation you're talking about where they have it in their heads. But getting it onto the paper is very difficult. So actually she might benefit from using a laptop with one of those programs.

But again, it's being given that information as a parent. That's a good example of you being given some information, but not all of it. And I doubt the school is deliberately withholding it.

They perhaps aren't even aware of it themselves.

Kate: 00:49:15

Yeah, this was a three minute conversation at Parents Evening.

Rebecca: 00:49:18

Yeah, exactly that. And then it's for you to go away and research it and find out what she needs. And it's. And again, it's just putting all the work on you as a parent.

Yeah, yeah. It should, it shouldn't be that you have to become the expert in dyslexia support and said law to be able to get your child the support they need.

That's not happening.

Kate: 00:49:43

Listen, I, I'm so grateful for your time today, Rebecca.

I think it's going to be such a helpful conversation with people and you know, I, as we were talking, I mean, it's a whole other rabbit hole to go down.

But I was thinking, you know, know, AI and I wonder what AI is going to bring to this conversation in so many different, different ways and I hope in lots of positive ways as well.

And you know, maybe we'll look back in five years time and think, oh my gosh, like this is where AI has helped with teaching and for, you know, learning and dyslexia support and all of these things that hopefully is going to take the load off. You know, I pray that it's going to come in as a positive way.

Rebecca: 00:50:21

Let's hope so.

You can see all the ways just, you know, for example, what I was saying, how your daughter would need the learning materials presented in a different way. You would hope that AI used responsibly and, and in a productive way could do that rather than a TA having to do that. So, yeah, you're absolutely.

There are ways that it could be really, really helpful.

Kate: 00:50:44

Well, Rebecca, just tell everyone how they can get hold of you if they would like to work with you or just learn a little bit about your services.

Rebecca: 00:50:52

Sure. So my website is www.fedinparentrescue.co.uk and on there are my contact details and also a contact form.

So they can either email me direct or they can just fill out the form and then I get back to people. And that's the, that's the most straightforward way of getting, getting in touch.

And if they want to call the SOS helpline, all the details are on their website. If they just Google sosn, then they'll come straight up.

Kate: 00:51:26

Brilliant. Thank you so, so much for your time, Rebecca, and I hope that we'll speak again very soon.

Rebecca: 00:51:31

Yes, thank you so much for having me.

Kate: 00:51:36

Thank you for being here and listening to today's episode. Episode.

I just want to remind you that if you are looking for more support on your ADHD journey, there are so many resources waiting for you over@adhd womenswellbeing.co.uk so inside the ADHD Women's Wellbeing Workshop library, you'll find practical and compassionate guidance on topics such as nervous system regulation, rejection, sensitive dysphoria, perfectionism, emotional regulation, hormone hormones, parenting and so much more. All designed specifically for late diagnosed neurodivergent women.

You can also explore my new book, the ADHD Women's Wellbeing Toolkit, which was published by dk, which is also available in ebook and audiobook, which is packed full of tools to help you feel calmer, more regulated and more like yourself. And if you do crave a bit more deeper connection and offer ongoing support, come and join us inside the More Yourself community.

It's a gentle space for learning, reflection and connection with other neurodivergent women.

And you'll also find the recordings from our first ever ADHD Women's Wellbeing Live event, which brought together incredible speakers and a room full of inspiring women for a truly special day. We have recorded it all for you and it's there to buy.

So whether you're just starting your journey or looking to go deeper, there's something there for every stage. Just head to ADHD womenswellbeing.co.uk to explore everything. And as always, thank you so much for being here and for being part of this community.