VOICENOTES FROM THE EDGE: The EHCP; Paperwork, Pushback, And Parenting Power

We listen to a mother lay out the grind of advocating for her neurodivergent child: three-year diagnosis timelines, EHCP hurdles, and the cost of going part-time to manage endless forms. We hold space for the anger, share practical tactics, and commit to building community that lightens the load.

• navigating ADHD and autism diagnosis delays
• small-school benefits and funding gaps
• EHCP prep, evidence gathering and templates
• hidden funds and how to find them
• posting forms, recorded delivery and costs
• managing capacity, privilege and burnout
• transition to high school and planning ahead
• building community to share resources

Here’s the number it’s 07 308 45 0037

Transcript

Welcome And Listener Voice Note

SPEAKER_03 0:01

Point boat from the edge. Poison from the edge. Point book from the edge. Poison from the edge. I can't believe that. Point note from the edge.

SPEAKER_04 0:16

Where the ATH team mums? I'm Claire.

SPEAKER_01 0:20

And I'm Jen. And we're back with another voice note from the Edge.

SPEAKER_02 0:27

Yes, one of our lovely listeners has sent one in.

SPEAKER_01 0:31

Yeah.

SPEAKER_02 0:32

And so why don't you send one too?

Parenting A Neurodivergent Child

SPEAKER_01 0:35

Yes, we'll remind you of the number at the end. But um for now, let's have a listen. Let's dive in.

SPEAKER_00 0:43

Hey guys, love the podcast. Thanks so much for all the really interesting topics you're covering. Your recent podcast got me thinking about what it's like as a parent of a neurodiverse child. I've known for years that my son was some kind of neurospicy, and we've recently had diagnosis of ADHD and autism. So we've got the double whammy, and it's no surprise to me at all. And it's also not a huge surprise that maybe I could think about getting diagnosed, but that's a whole nother journey down the road.

SPEAKER_01 1:16

And we're straight away acknowledging the maternal instinct to just put your own things, your own needs, your own stuff.

SPEAKER_04 1:25

Yeah.

SPEAKER_01 1:26

Right down to the back to the bottom of the pile.

SPEAKER_04 1:29

Yeah.

SPEAKER_00 1:34

But to be honest, the the trickiest bit, other than the constant advocating at the school and having to, you know, um fight battles that we shouldn't have to fight.

SPEAKER_04 1:44

Yeah, we we know it all too well. Rather familiar. We shouldn't have to.

SPEAKER_00 1:49

Unfortunately. Is just the sheer level of paperwork and the size of the applications that we have to wade through to get any support.

SPEAKER_04 2:02

It's like any government or like council or anything paperwork, it could have just been written by like the Department for Bureaucracy, couldn't it?

SPEAKER_01 2:14

Yeah, the the the matrix lasers thing of like trying to like get through without ringing the alarm bells. Yeah, you know, needing of this support.

SPEAKER_04 2:30

It's obviously cliche to call things, calf carest, but that's what it feels like.

SPEAKER_01 2:35

Darling, nothing is cliche from you. Um, I'm just about to be living that life, aren't I? So I'm I'm very curious. I won't wondering if she's gonna talk about the dreaded four-letter word.

The Paperwork Burden And EHCP

SPEAKER_03 2:50

It's not a word, it's an acronym. Four-letter acronym. EHCP.

SPEAKER_00 2:56

I chose to put my son in a really small school, um, which has been a blessing, but also a curse, because it also means they don't have the funding that they need to really offer him the support that he needs. So it's been really important that I'm all over it all the time. Um, and I have to be on top of all of his various lesson plans and kind of guide the teachers in a lot of ways, in a lot of ways.

SPEAKER_01 3:21

I mean, that sounds like absolute bullshit, doesn't it? What the hell? It's like not your job, is it? We're one of the richest like countries in the world, aren't we? Like, what how is like how is a parent having to like do this sort of thing?

SPEAKER_04 3:39

School's finances and do their budget for them and know their lesson plans and but it's just it's an uh And in a small school as well, you think they've got less to deal with and um you know what I mean? But she's saying like they've got less money because there's it's endemic, is that the what that's the word I'm looking for?

SPEAKER_01 3:58

Explain it to you.

SPEAKER_04 3:59

Like it's uh epidemic, but uh what I mean it basically, and I may be saying the wrong word, it's hydromatic. It's what I'm trying to say is it's like up and down the country, every school, every every nose I've age from parent, every nose every child. They're all going through this.

SPEAKER_00 4:24

Um and more recently, the application to actually get diagnosed took um I think I think it was about three years from start to finish, which from for some people that's really that's a really short diagnosis. So we are really, really lucky.

SPEAKER_04 4:41

Well, I was just reading in air. I was about to say in the newspaper, but it was uh it was online.

SPEAKER_01 4:50

Honestly, I watched the wafs and cry when you do this. What she goes from like cackling top of the waf range to like suddenly Kevin, well, never say please continue. I'm sorry. It's fine. Right, look. I'll fix it. Listen to me. Yeah, I am. I'm sorry. I do interrupt you and I apologise. And we've both interrupted our listener to say this.

SPEAKER_04 5:21

Well, I thought that was the point of the party.

SPEAKER_01 5:23

Exactly.

Small Schools, Big Gaps In Support

SPEAKER_04 5:26

I was trying to say shop. I'm sorry, listener. Um it's all here. Anyway, no, I was reading in the I was gonna say newspaper, but no, I don't never read a newspaper in the past ten years. I don't read no newspaper in the past ten years, I haven't picked one up. But um, I was reading it on my phone from a newspaper and it was about this trial of this killer that was in our area who was a child who's got autism.

SPEAKER_01 6:03

Oh, I know who you're talking about, yeah.

SPEAKER_04 6:05

Yeah. Now they were making out in that that because it took eight months for them to get an autism assessment. It was outrageous. What?

SPEAKER_01 6:15

Do you know anyone whilst in the prison system or not?

unknown 6:19

No.

SPEAKER_04 6:20

While he was in school?

SPEAKER_01 6:21

Yeah, wild.

SPEAKER_04 6:22

Like, do you know anyone in our area? He was going through the same s the same service that our children go through.

SPEAKER_01 6:29

Okay.

SPEAKER_04 6:30

That's tough like like less than three years. So yeah.

SPEAKER_01 6:33

Um No. Well we've recently, you know, like mine's been on the the the pathway for three years. Yeah, exactly. Um, he's got one in eight months. Yeah, exactly. I think I knew someone who has, but they um I think they weren't private. So there you go. I think that's how they did how that happened.

SPEAKER_04 6:56

Yeah, it's it's just like uh all all joking aside.

SPEAKER_00 7:01

No, it's horrendous.

SPEAKER_04 7:02

It's disgusting.

SPEAKER_00 7:03

But at the end of the day, none of this would have happened if I wasn't on it and consistent and a bit pushy, to be honest.

SPEAKER_01 7:11

Yeah, again, entirely relatable. Like I feel like it is not it is not the parent that I am, like by nature, but by by learning, I'm having to become more and more ready to just be this like what do they call them? A bulldog mum or something like that. Helicopter, no tiger, just tiger mum, yeah, to be like fierce and like being like my kid needs this, so that you know it's like you have to be because you're their advocate, aren't you?

SPEAKER_04 7:44

But like our listener was saying, she's had to be so on it, and that's hard for people like us, isn't it? Um, and also like when you think of our own experiences at school and how you go on back into that environment, which is so triggering, and the teachers are still trying to talk to you like you're little meffy kids, and also really able to complete lots of written documents and um represent him in the way that he needed, and on top of that, I'm now looking into looking for additional support around uh trying to get one-on-one swimming lessons, they're expensive.

SPEAKER_00 8:25

Um, there is a fund around here that I can apply for.

Diagnosis Delays And Inequality

SPEAKER_01 8:28

Here's the thing as well that I've found, right? So we talk about it in quite a like suspicious sense of like governmental stuff being like set set up to fail you and like loads of like hazards where you could just drop off of like bothering to try and apply for things. But even the most like genuine grassroots well-meaning services and and support options are often like deeply hidden or extremely underpromoted because they're already oversubscribed the second they like exist. Yeah, and so they're not pushing their their like availability, or they're they're really hard to get, hard to find. Like for her to have found that there's a fund nearby, I bet she's done some deep digging to find that, you know what I mean?

SPEAKER_04 9:18

Like it sounds like this this you have to work this really on it, yeah. But it's like as if it's from charities and stuff like that, they haven't even got the budget to publicise after.

SPEAKER_00 9:30

Nah. Um, or even things like high school application to get him the support that he needs in advance of moving up to high school. I need to make sure we've got the EHCP, we need to have the right lesson plans in place. There you go, she said it.

SPEAKER_01 9:45

The EHCP. Oh god, and like I'm just um kind of at the start of that really. I thought I was at the end. And now I realise it was the start.

SPEAKER_04 9:57

Well, I regret not having all this stuff in place when my son went to high school, so I'm really, you know, impressed that you're getting on with it. I didn't really look for any help until his final year of juniors, and then I was just battered away with not worth trying.

SPEAKER_01 10:14

His school was really, really unendy affirmative, wasn't it?

SPEAKER_04 10:18

They just told me to go to the doctors, and they were like, we can't really help you because you're about to go to high school, so it's not worth trying.

SPEAKER_00 10:25

Opposite of what this mum's saying. Yeah. Um there's been so much to do just in the way of paperwork, paperwork, paperwork. And none of it is simple and none of it is small. Um, one application I just finished recently was 55 pages and needed three attachments.

SPEAKER_01 10:43

And so we're living in a world where there could be an and to that. 55 pages, three attachments.

SPEAKER_04 10:50

Like and they're not living in the real world, these people. Like it is it is literally their full-time job.

SPEAKER_01 10:57

And you are then parenting this neurodivergent child to the understanding. Yeah, but it's like their full-time job to go through these forms and that but it's not ours.

SPEAKER_00 11:07

They won't accept electronic copies. I have to post it all.

SPEAKER_04 11:12

Oh, this disgusts me, I have to say, because this is, you know, if you do like a form for um pip or universal credit or anything, it's the same. They're all like, they don't accept electronic copies.

SPEAKER_01 11:26

Well, so then you have to send it by recorded delivery, and that's it's gonna cost you a tenner as well.

SPEAKER_04 11:31

Well, you have to send it by recorded delivery because they'll say they've lost it.

SPEAKER_01 11:34

Yeah, exactly. If you know well enough to send it recorded delivery.

SPEAKER_04 11:38

How many times have things got lost in the post on the way to like a governmental department? I mean, come on, get with the times.

SPEAKER_00 11:49

So this is a full-time job in itself. And I thought that could be an interesting topic because I know for a lot of parents this is a really full-on part of our lives.

SPEAKER_04 11:59

Yeah, um, I think we do need to do um some episodes on like EHCPs and all that, don't we?

SPEAKER_01 12:07

Oh, definitely. I mean, I'll I'll be I'll be literally doing it when I see right.

Hidden Funds And Underpromoted Help

SPEAKER_04 12:11

We should Yeah. And we would love to hear from listeners because we know uh the neurodivergent mums tend to have the neurodivergent kids and they do tend to need all this stuff going on.

SPEAKER_01 12:24

Which is hard for anyone to achieve. Hard for anyone, but even harder for us.

SPEAKER_00 12:30

And if we don't do this, then our kids don't get the basic support that they need in school or in after-school clubs or just in the world.

SPEAKER_04 12:39

And often we as the neurodive agent mums of neurodive agent children know how that feels.

SPEAKER_01 12:45

Yeah, definitely. But I I am like feeling empowered by hearing her speak like this, thinking like, you know, in the same way of like where the generation of parents that have like talked about, took on, learned about gentle parenting, respectful parenting, all that stuff. Like, just imagine our generation of kids touch woods, like you know, the way this mum's talking about like what she's setting up for her child educationally.

SPEAKER_04 13:12

Yeah.

SPEAKER_01 13:13

You know, what like I can't comprehend.

SPEAKER_04 13:15

I know, but it is it is like a self-sacrifice, and you know, this mum sounds very capable.

SPEAKER_01 13:22

Yeah.

SPEAKER_04 13:23

You know, some people just can't do it.

SPEAKER_01 13:27

No. So that yeah, you're right. So the kids that haven't got this sort of representation by chance. Yeah. You know, in a way of someone having the grit to to do it.

SPEAKER_04 13:37

Yeah.

SPEAKER_01 13:38

Um that's a massive failing still, isn't it?

SPEAKER_04 13:41

And I think this mum should be really proud of herself and how she's managing.

SPEAKER_00 13:46

I really don't know why these applications that are for people that struggle with a lot of this stuff have to be quite so complicated.

SPEAKER_04 13:55

I mean, don't want to get all conspiracy theorists on you, but you know designed by the Tory regime! It is like the fucking old cars don't want to give us the money.

SPEAKER_00 14:10

The report, his diagnosis report, however, was so thorough, it's been incredible. I've been able to use it time and time again and take sections from it for various other applications.

SPEAKER_01 14:20

I've told you last night, haven't I? I was sat up. Yeah. I literally couldn't find digital copies of the occupational therapist, like secret shopper assessment of my child in the school setting.

SPEAKER_02 14:33

Yeah.

SPEAKER_01 14:33

The speech and language thing, the the the the therapist report.

SPEAKER_02 14:40

Yeah.

SPEAKER_01 14:41

Um and so I sat there with paper copies, like just copying chunks of it into a table that I've made. Of course I'll laminate it by the way. Um just like to try and do sections for this EHCP, like already so aware of the fight that's ahead of me that I'm like tooling up. I'm like forging my armour now of like these pages and pages and pages of like presenting the information they're gonna be getting anyway, putting in more easy to digest format.

SPEAKER_04 15:13

I propose there should be like an online portal, you know, nationally for children with neat social educational needs where this information can be helped electronically.

SPEAKER_00 15:26

Definitely. Um, so I was really lucky with that because I know a lot of people haven't had the same experience as we had.

SPEAKER_04 15:34

And I totally get what she's saying, but I don't think she should even have to count herself as lucky. That should be like what all children should e expect in their diagnosis information.

SPEAKER_01 15:48

I know it's terrible though, isn't it? Like if you think about it in terms of lucky in the sense of just having a child that doesn't mask in school to the extent that you can't even get a d a school on board with the diagnosis, like you know, things like that.

SPEAKER_04 16:02

Yeah, but it like it shouldn't like have to class yourself as lucky, is what I mean.

Preparing For High School And EHCP

SPEAKER_00 16:07

I know. But again, it's taken my knowledge and my education and my capacity and tenacity to really keep things moving and to keep things pushing forward for his benefit.

SPEAKER_04 16:21

And that's amazing, and we've got to applaud her for that.

SPEAKER_01 16:24

Yeah, it's great to hear her be able to say that herself and understand it. Like when you're in the absolute thick of it, it can just pull you down, can't it? But but she's staying strong, she's she's on it, isn't she?

SPEAKER_04 16:37

But she's recognising and her privilege of her education and all this, where you know, some neurodivergent children are gonna have neurodivergent parents who might not have even made it through the school system, you know.

SPEAKER_01 16:51

She says her capacity too, I guess she means her capacity to deal with this sort of thing, you know what I mean? It's yeah.

SPEAKER_00 17:00

Yeah, not everyone's glad. Um, and as a result of all that, I have actually decided recently to go part-time at work because I've just got so much life admin at the moment on his behalf.

SPEAKER_01 17:10

Here we go. Here's where it becomes extra fucking political. Yeah. How dare our like systems be set up like this? Yeah. That this like clearly extremely capable woman because she's a mum. Let's face it.

SPEAKER_04 17:28

Yeah.

SPEAKER_01 17:29

Oh. Yeah. I mean, it's the thing. I mean, glad for you if if you're able to go part-time, like it it that will take a lot off your plate in terms of you've got all this extra to do.

SPEAKER_04 17:41

It's if you it's gonna lower your stress in terms of the demands upon you. But if it becomes a financial struggle, then that's another demand upon it. So it's like it's the thing I'm always saying about like women have come into the workplace, so they've got double the amount of people. But there we are, nothing's changed our home. There's no extra help for like a lone parent, or you know, you're just like expected to act like a man in the workplace, into um, in terms of like, yeah, just fuck me kids off, you know what I mean? I don't know.

SPEAKER_00 18:27

It's just not um that it does affect my capacity in the rest of my life, and I'm in a position where I can manage that for a short time, and stress level-wise, I think that's quite important to make sure that I can show up and be the best mum that I can be rather than constantly frazzled. But good god, this has been quite a mountain.

SPEAKER_01 18:48

What a fucking queen. Yeah, I love love women, yeah.

SPEAKER_04 18:53

It's it's like a legendary decision that you make and to like you know, give yourself that self-care to be less frazzled, to be there for your child, to put all this time into your child's parenting and I just think it's amazing.

SPEAKER_01 19:12

Yes, this is so like sorry, I'm fe I'm feeling like I'm sounding low, yeah, but it's just because I'm pissed off.

SPEAKER_04 19:20

No, we're just like taking it in, aren't we? Because we're just processing that that's what's happened. But it's the feeling that that's what she's had to do because the systems aren't in place. Is the thing a really positive decision, yeah, but it feels like it's been forced upon her.

Forms, Costs, And Systemic Barriers

SPEAKER_00 19:43

Yeah, so yeah, shout out to all the other parents dealing with their neurospicy journey. Um, and thanks again for the podcast. Love you guys. Bye.

SPEAKER_01 19:52

Oh she's gorgeous, thank you so so so so so much for that. Yeah, what a lovely little note. It's it's emotional though, isn't it? Like it is, it's it's heavy. The just the sisterhood is real, isn't it? That you hear yourself, you hear your loved ones. Like you just it's just like it's just an exhausting business, isn't it? It really is. Like the bravery involved in all those things that she all the things that she said in a really together voice, like acknowledging that she's on top of it all, but like acknowledging that it's an exhausting job.

SPEAKER_04 20:33

That even she like can't do it without yeah without going part-time in her job. Um and like just knowing that every one of those decisions that she's made, every one of those um like thing things that she's pushed, uh every every form she's filled in, it's all for her child.

SPEAKER_01 20:56

It's like such a incredible, like act ongoing act of love, isn't it? Just having to do this fighting.

SPEAKER_04 21:03

And even thinking like, oh, you know, I might have a neurodivergence myself, but I haven't really got the time to pursue that because it's all about a child. And that's just amazing.

SPEAKER_01 21:18

Yeah, thank you so much. And like, yeah, if you're um if you're also looking into HCPs, or if you're an experienced um person in that field, if you're if you're like a teaching professional and you know about it from that angle, or if you're a person diagnosis, even all them forms you have to fill in, isn't it?

SPEAKER_04 21:41

All the forms you fill in for a new dive aging child.

SPEAKER_01 21:46

Yeah, um send us a message. We were we're we're gonna get this community thing together. I'm always dying now that we are getting the voice notes. I'm dying to get these listeners chatting to each other, you know, and like create the um actual, you know, when they're talking to us, we don't want it to just be a little echo chamber of you talking to us. We want to get you talking to each other too.

SPEAKER_04 22:08

We need some wiser, wiser people than us, don't we?

SPEAKER_01 22:13

Some sort of yeah, community digital creation wizard.

SPEAKER_04 22:18

No, we're we're gonna do it, guys. I trust, you know. The health for me is slowing me down.

SPEAKER_01 22:25

And the EHCP and the likes for me, doesn't it?

SPEAKER_04 22:28

Yeah, well we'll just the fact that we're in the light month, it's there in the title.

SPEAKER_01 22:33

Um but yeah, thank you so much. If you want to send us a voice note, yes, please do.

SPEAKER_03 22:39

Here's the number it's 07 308 45 0037.

SPEAKER_01 22:47

So, yeah, give us a voice note and we'll chat back to you and we're gonna get you talking to each other soon as well.

SPEAKER_04 22:53

And thank you so much to our listener.

SPEAKER_01 22:56

Yes, thanks again. Send in loads of love and admiration.

SPEAKER_03 22:59

Definitely raise a fist and say it with us, sisters in chaos.