So much f*cking admin | Jess Meredith

EPISODE TRANSCRIPT

Mark

Hello and welcome to Neuroshambles episode eight. Welcome aboard, Neuroshamblers. It's lovely to have you here. for what is another jam-packed episode. We are meeting another guest where we're going to be talking about our topic of the week, which is so much fucking admin. Please excuse the swears, but to be honest, if you've been through the level of admin that many of us parents have been through, the swearing is entirely justified and won't come as a surprise to you As well as that, we've got your usual classics such as Neurodiversity Champions, Tiny Epic Wins, and some What the Flip moments. So I'll stop giving you all the preamble and get stuck in.

SECTION INTRO

Meet the guest.

Mark

So I am delighted to welcome another new guest to Neuroshambles. This is a guest that was introduced to me by a mutual friend of ours, Tom. So hello, Tom, first of all. And I'd love to welcome to Neuroshambles. It is Jess Meredith.

Jess

Hello. Thanks so much for having me.

Mark

Hello. How are you doing?

Jess

I'm all right, thank you. Yeah, I'm good.

Mark

Good, good. So obviously you're you're a a parent of a neurodivergent child yourself, but you also have a very interesting business, which I'm very excited about, called Differing Minds, which is genuinely inspirational. I love it. So t tell everyone what it's about.

Jess

Yes, I mean, I have gone all in on neurodiversity since I started to understand more about my little girl. But yeah, so Differing Minds is a not-for-profit social enterprise. And we train organisations, so anyone that works in a workplace about neurodiversity so that they can kind of provide better support and have a better understanding of Neurodivergent people and how to work with neurodivergent people in a positive way.

Mark

Exactly. That's what I was really kind of impressed by: is the That you're not just doing it as a box-ticking exercise. It's like, actually, no, these people have skills that are going to help you give you a competitive advantage. And that's Yes, yes, more of that please, yes. Exactly.

Jess

There's so much that I wish people would realize, and we are getting there. One of the other things that we do at Differing Minds is we work in schools, so we teach teachers and we teach children about neurodiversity. And the teaching children part is probably my favorite because They are a lot easier to teach than adults.

Mark

They are the ones that will change the world as they get older. So that's where I think all the focus should be. Yeah, fantastic. So aside from your day job Actually, your child is a day job as well, let's face it. But if you d just tell us a little bit more about the neurodivergent setup you've got there

Jess

Yes, so I'm neurodivergent myself, and I only came to this realization like many of us because my eldest child is neurodivergent So she is diagnosed autistic with a language disorder. She is on the ADHD pathway She has sensory processing disorder and she, I think, has a PDA profile as well. Right. So, yes, lots going on.

Mark

Lots going on there. How old is she?

Jess

She is six.

Mark

Okay. And do you have any other children there?

Jess

I do, yeah. I've got a a younger boy who is four.

Mark

Okay.

Jess

who has some quirks that we're very aware of, but uh currently on paper neurotypical.

Mark

On paper neurotypical. Undiagnosed neurotypical.

Jess

Exactly.

Mark

Yes, okay. So yeah, thanks for introducing your your your s Set up.

Jess

What's the topic of the week?

Mark

There's a lot to talk about in this episode, I think. We're going to be talking about the topic of the week, which this week is so much fucking admin. Sorry, I should have done a trigger warning. If you're offended by swears, this is probably not the best episode to listen to. But to be honest, if you've been through any of the kind of admin around sort of trying to get support for your neurodivergent child, then you will you'll you'll be swearing I would imagine daily. So you won't be too offended by anything that kind of comes out of this particular episode Now, I will start out by saying that what I'm not talking about general kind of logistical admin In the sense of like having kids comes with admin. You know, you've got to, you know, apply for school places and take them to the doctors and get dentists and all of that general admin, you know, that comes with children. That's obviously a given. But on top of that, if you have kids with needs and you are trying to get any kind of support for them, it is a an Unreasonable amount of additional admin on top of that. It's ludicrous the amount of extra stuff we do. And what I wanted to do is kind of shine a light on this. And again, I'm not just talking about the additional admin, logistical admin that your kid would need. Has like constantly repeating instructions, having to beat our kids' executive function, guiding them through social situations. There's having to pick up after meltdowns and tantrums, cooking different meals, the list. Is endless. So, and we're not even talking about that in this episode. That is an aside. I just needed to get it off my chest.

Jess

Do you feel better now?

Mark

I do, a little bit Yeah, this is gonna be yeah, this is gonna be a bit like therapy for me.

Jess

I was thinking that as we came into this. I was like, yeah, I think this is gonna be like a therapy session. I'm actually really looking forward to it.

Mark

But this is this is essentially what Neuroshambles Is about, I think, is just like just giving voice to these things. That's the thing about admin. Um, is that all of us, I would think, if any kind of parent of neurodivergent kids is trying to get support for their kids. We are constantly doing admin, form filling, box ticking, chasing stuff up, right? All of that stuff But it's sort of an unspoken thing. Like, you don't really talk to other parents about the amount of admin we have to do because. Who wants to talk about fucking admin? Exactly.

Jess

It's so boring, but we have to do it.

Mark

Yeah, there's only one thing more boring than doing admin, and that's talking about the amount of everything that you've done. So. So it I wanted to just sort of speak about it and so that other parents, you know, of neurotypical kids who are listening in, hopefully, can get a little sense, a little flavor of what we have to go through. So in terms of the admin that you're sort of involved in at the moment?

Jess

She has just got an EHCP. About a month ago, we found out she's got an EHCP. Congratulations.

Mark

I think that definitely needs to be said because I know the amount of effort. that that and it's like you know someone says oh i did a marathon the other day it's like congratulations now this is way way more commendable oh my gosh totally i mean

Jess

The best part of a year. I mean, it did take us a year. I applied around about this time last year. Right, okay. So it really has taken a year. So, but we've got that now. I mean, I'm not happy with what's in it, but you know, on the topic of admin, one of the reasons I'm not happy is because there's one thing that needs clarifying in it, and the person that needs to clarify it the educational psychologist just doesn't respond to emails or phone calls. And I'm sure it's because she's really, really busy. I've spent my life chasing that. So we've had to just agree the final EHCP with the bit I'm not happy in, knowing I'm going to appeal it.

Mark

So that's really fun.

Jess

So we've got that going on. And then I so I'm now in the position where I'm trying to work with the School to make sure that we're doing what's in the EHCP. And I'm also next year, she'll be moving from an infant school to a junior school. So we're trying to get her a place at a specialist setting. And so I am in the middle of fighting for that place, hoping to find out in the next month.

Mark

Wow, so that's already a massive administrative burden. I think at this point I should do a disclaimer here and Disclaimer is that although I'm talking on behalf of my neuroshambolic family and the amount of admin involved, I am not the person in our household that has done the brunt of the admin. I mean, I have done A lot of admin. There's plenty to go around, let's face it. There's enough for everybody. The vast, vast, vast majority of the admin that has happened in our household has been carried out by Tam, who is. unbelievable at it. So I wanted to just go on record as to say a massive thank you to Tam for everything that they've done to get all the support that our kids have got because I know how much work and how much effort and how much mental load that is. And I think it also needs to be acknowledged that the vast majority of admin for neurodivergent kids tends to be carried out by the mums. I I presume I'm just assuming that that's the case in in your world, Jess.

Jess

Yes, I think we have a weird setup in that so I have ADHD too, and part of that has been very helpful with this kind of thing because I am Kind of like a dog with a bone for some of these things, and I can really get loads of stuff like started, and I can, yeah, but I'm not good at making sure we filled out forms in time or the sort of more administrative part of the admin, if that makes sense. I can do like the big stuff Can write the applications and kind of basically put the business cases together that you have to do to get a diagnosis or place for school. But the sort of smaller bits, and that's when Steve actually really comes into his own because he loves that stuff. He is like super organized. He likes like Making sure we've printed it all off and stapled it together and put it in a folder. That's the bit I'm not very good at. Nice. So, good teamwork. We do work quite well as a team. Having said that, I have definitely done the bulk of it. because the sort of stapling filing away is the stuff that you can do once you've got over the massive hurdle of doing that huge amount as before.

Mark

Yes, you've basically done all the work. You've won the penalty. You've put the ball on the spot. And he stepped up, smashed it past the keeper and taken the credit.

Jess

Yeah, that's pretty much it. Yeah.

Mark

I mean, I will just sort of explain a little bit about Tamanai's sort of, because we made an agreement, basically. Tam was part-time when the kids were off school, and then when the kids went to school they were offered more hours at work and we talked about it and decided that actually those hours would be better spent filling out forms and chasing stuff and doing all the admin, which like so which makes it sound like uh there's that Tam got suddenly got loads of extra time, but that's not that's not true. There's still not enough hours in the day to do all the amount of admin there. And that's also not really factoring in the constant thinking about it. It that's not on the clock, that's constantly at night when you're thinking about, oh shit, I haven't done the EHCP 100%.

Jess

You don't even think about that, but that is such a huge part of it. The sleep that you lose, or just in general, that you can't get it out of your head, and that, like That is such a huge part of it.

Mark

There's this weird little admin cloud following you around constantly raining on your On your spa day. Oh, shit. I forgot to send the the evidence for the EHCP attachment. Ah.

Jess

You say that, but as I mentioned to you, I had a I was on a spa day yesterday. And I got a call from a speech and language therapist, and I've been trying to get a speech and language therapy for ages, but there are no NHS speech and language therapists. Despite her having a language disorder, she's never had speech and language therapy on the NHS. And it's hard, it's even as hard to get it a private Speech and language therapists because they're so in demand as well. So, anyway, I'm sitting, relaxing on my lovely spa day, and I got a call and I thought I'm going to have to take this because if I don't speak This woman, now it's going to be like another few weeks before I can get back in touch with her. So I spent 40 minutes on the phone speaking to this woman about my daughter's needs in the middle this lovely, beautiful spa.

Mark

Feel your shoulders getting stiffer again.

Jess

The effect of the massage and like wearing off on doing all the good works. It's non-stop.

Mark

It is, it is. So, you know, just a huge thank you. And for all any parents who are going through this, I know, we know how much work you're going through, and you're doing a phenomenal job, all of you guys. Well done, it is grueling and thankless. Not just, you know, from the world, but from your kids. They have no idea, do they? They don't give a shit. They don't. Yeah. They don't at all. One of the things I think as well that that needs to be acknowledged that again I don't think is acknowledged is I think it's The very people being asked to do the most amount of admin are the very people who have the least amount of energy and have the least capacity to be able to do all of this admin. And somehow we're doing it. I don't know. Like, it's phenomenal. But we're all just frazzled, sleep-deprived shells of humans. And yet. We finally get to the point of asking for help, and then you've got to fill out an 80-page document with supporting evidence.

Jess

And it's just like really When you say this though, I genuinely think people who don't experience it think that you're exaggerating. But like, this is not an exaggeration. No, no, no, no.

Mark

This is a serious there's an actual application that is eighty pages plus additional evidence. And also, it's not just box ticking either. It's not just like, do they have ADHD? Tick. You know, it's like. Give me some anecdotal evidence about times where your child has displayed PDA or whatever it is. It's like a big empty box, and then you're there going, Well I mean, I I I don't want to put too little because they won't believe me, so I'm just going to give it all, give it to them all. And then you you fill out this massive, like, empty yawning box of of um of text.

Jess

It's crazy. I don't know if you've gone through this, but so diagnosed autistic, but as is on the ADHD pathway. And if They are, I think it changes at maybe age 11. So if they go through like the diagnosis process after 11, they get screened for both at the same time, or at least you can like fill out, it all goes to CAMS. Right. But if it happens the way that it's happened for us, which is we went down the autism route first, and so you fill out all the paperwork for that. We went through the two-year process of getting her diagnosed as autistic. And now she finally reached the age of six, which is when you can pursue an ADHD diagnosis. We have to go somewhere different to where we went for autism. and you have to start the whole thing all over again, and they ask you all the same questions because they've only got one form and they don't say, Are you diagnosed autistic? Don't bother filling out all of this stuff. They just ask you all the same questions to basically screen for whether these children they think might have autism and then to send them back to the other place as well as ADHD And there's no way of going around the forms. You just have to do the exact same thing all over again.

Mark

Yes, that is the the lack of joined up thinking is absolutely infuriating. And also the fact that you have to do separate pathways is mind-boggling because, you know, when we we got Jay was assessed for autism initially and he is literally climbing on radiators. He's like playing Flora's Lava in a quite a small room. And I'm and part of me's thinking, I should stop him doing that, but the other part of me is thinking You go for it, kid. Yeah. You do it. I want him to see you in all your glory. But after all that, they go, right, he's been signed off for autism. At no point. Do they then go, Yeah, let's ju while you're here, it's obvious he's got ADHD as well. Let's just tick that box and move on with our lives No, what you do is you go to the back of the queue for a whole different pathway and it's another eighteen months, two, three years, however long it takes I reckon they should just get a panel of parents of neurodivergent kids in a room and just like send the kids in one by one Like, yeah, yeah, that is, yep, autism and ADHD. That one's just autistic. That one is just ADHD. That one's probably PDA.

Jess

I reckon they should send us into schools. Never mind the pick kids that have been referred. I could go into my daughter's class and be like, that one should be on a pathway, that one should be on a pathway, that one should be on And I know you're not supposed to do that.

Mark

No. Just saying we could. We could if we were called upon. We'd clear the backlog in no time. What I thought I would do now is go through the life of an application. This is any kind of application that we have To do because there are multiple different types of applications, but they all seem to follow a similar kind of journey through life and So I thought, you know, particularly for parents of neurotypical kids who might be listening in, I want to just explain that getting any kind of support for your child is not like getting a library card. You're not just gonna fill out a form and wait for it to come back. And then you can get some books out. That's not how this works. Okay. It is almost Kafka-esque in its. Sort of bureaucratic nonsense and ridiculous red tape. And I thought, I just want you to walk with us a little while and you go through the journey of an application, any kind of application So obviously the first thing you you do is you request a form, right? On paper Pretty straightforward. No, it's not. It's not. Because once you there are times where they don't just give you a form straight away, they try and discourage you from having a form. Have you ever had that?

Jess

Oh yeah.

Mark

Tam and I have both been on parenting courses just to get a form.

Jess

I haven't had to do that, but I have heard of a lot of people that have to do that.

Mark

A lot of it's like, we think he might be autistic. And they were like, I don't know. You might just be shitty parents. It's like, okay. I mean, I'm pretty sure we're not. I'm quite sure we're not, but okay. Tam did it first. And I was like, oh, fuck it, I'll do it as well. Just because they might turn to me, turn around and say, he's the rogue parent there. So we both did it separately. And, you know, we know what we're doing. We've done a lot of research. We've done a lot of thinking because. There's a lot of background that goes into even requesting a form. Do you know what I mean? You don't just decide one, ah, fuck, I'll do it. I'm just going to get a form like you're changing your cereal. It's a massive kind of lead up. until you actually go, Okay, I'm gonna ask for help. Then you have to jump through a few hoops to to get the form back. Then they say, All right, we sent the form. Um, the form doesn't arrive very often. Right, have you had that, Jess?

Jess

It's so true. Honestly, when you said you were going to walk through the live of an application, I thought, oh, what if our situations are really different? This is going to be uncomfortable.

Mark

Guarantee they're not, Jess. Guarantee they're not. Okay, so the form has not arrived. So you so you've you you try and contact whoever it is that was sending the form via uh and obviously you're ignored for ages. Um

Jess

Because no one picks up the phone when they telephones are simply paperweights.

Mark

And so you try and you try and chase them up for the form. Eventually, you get through to them and they tell you, just wait, just wait for it to wipe. It's on the way, just wait for it. They don't give you any guidance on how long to wait. I mean, you know, I l like the Postal Service in this pro the country is pretty good, so I don't know how you're sending it. Unless you're attaching it to a neurodivergent pigeon. It's just getting distracted.

Jess

the number of people that must be so frustrated with me, because when I finally get through to someone on a phone, I'm always they'll be like, Yep, yep, we'll be in touch or you'll get the form or you'll hear from us and I'm like, sorry, I'm not getting off the phone until you've told me when. When do I have permission to get back on the phone again and chase you for something?

Mark

You're not leaving me with this indefinite timeline of it will arrive or someone will be in touch. I want to hear you put it in the envelope. I want to hear you lick in the envelope. Yep, good. And I want to hear you walk into the post box. So anyway, after lots of chasing up, the form arrives. And that is like, oh, brilliant The form has eventually arrived. And then you read it and you realize how much fucking work you now have to do to fill out this massive form. Okay. But you fill it out. And it could be any number of questions. And you've got to steal yourself to do that. Because again, we are living. A pretty fraught life, generally. There's not much time to sit and final these forms. And at the end of the day, when you finally got them into bed. Not necessarily to sleep, but they're at least in bed in their rooms.

Jess

Then it's like, right, the last thing you want to do then is 20-page form.

Mark

Yeah, it's fill out a form about it

Jess

It but I don't know if you do this, but like you know, you will have waited, like you said, ages to get this form and you've chased someone and you've made it seem like the most urgent thing ever. And then, because you get it, and it's so long and you can't be bothered. It will take you ages to fill it out.

Mark

Yeah.

Jess

And that's the other thing as well.

Mark

Like, a lot of parents of neurodivergent kids are neurodivergent themselves.

Jess

Exactly.

Mark

So that's the extra kind of executive function that is required. It's your kryptonite. And also, I think it needs to be acknowledged that filling out a form about your kids' kind of challenges is emotionally exhausting.

Jess

It's real it's draining.

Mark

You're writing about your kids behaviors and it's it's you're having to write like, you know, Otto was in floods of tears because someone used a handwriter unexpectedly and it's it's like you're bitching about them. Yeah, you know, and it feels horrible, but but obviously, you need to be honest and you need to try and get them the support they want. So you're doing that. I mean, on the flip side. I I find filling out those forms quite useful sometimes in understanding what is expected of of neurotypical kids and going, Oh, yeah, oh, yeah, you can't do that.

Jess

Jesus, no. Oh, definitely had that.

Mark

There was some. I mean, I d uh I don't know if you've read The Explosive Child book, which is amazing. It's wonderful. I wholeheartedly recommend it to anyone whose kids are kind of neurodivergent And one of the things is there's lot like a massive checklist of things that you tick, which are kind of presenting problems. Can they do this without difficult And which is, that wasn't a form I had to fill out. I chose to do that. This is what it's done to me, right?

Jess

Who are you?

Mark

I know, exactly. But it was such an eye-opener And going, my God, I've ticked nearly everything.

Jess

Yeah.

Mark

Pretty much everything in this. Like, these are all of the things that neurotypical kids find easy. Or they don't find a challenge at all. And like. it it was quite an eye-opener i in sort of helping me to understand where both of the boys were at that point. So it is quite useful, but again, pretty disheartening when you're having to do it.

Jess

I know. And like someone said to me when I first started all of this you have to almost describe them on like their worst day when they're finding things the most challenging, because otherwise people don't tend to listen. And so you're like, you know, it not you're not exaggerating, you're just yeah, you're just explaining what it's like maybe on like at the hardest time. And that's really hard to like Yeah, right, then read back and know that someone else is then going to read that about your child.

Mark

So yeah, it's exhausting on so many levels, all of this form. Anyway, you filled your form out, you've done it, right? But that's not all, because you've also got to submit evidence from other people. As you say, no one just believes the parents because we could just be making it up for a laugh, right? Just pretending our kids are autistic because it's interesting at dinner parties No, we don't go to dinner parties anymore. We're not invited and we're not welcome. We're so boring. We just talk about admin all the time.

Jess

Exactly.

Mark

Yeah, exactly. So you then have to persuade the school very often or other other professionals to submit evidence such as attendance records or behavior records or school reports or IEPs or any correspondence, you've also got to get all that together and collate that. and get the school to fill out things from their point of view. Now, Tam is a teacher. I know how hard teachers work and how snowed under they are just with day-to-day education, let alone having to kind of pull together and collate information to support someone else's applications. So obviously you request it from the school, and obviously Nothing happens Because why would it? You know, there's a lot going on. Then you've got to chase up the school to say, Hey, we've got the could you, you know, fancy doing Doing a form because you don't want to be a dick about it either. You know, they I know I appreciate everything they do, they are hugely supportive of my kids, and they've got a lot going on, and I understand that. But also, can you, you know, help me out? Yeah, just do the form. I'll sit with you. We can do it over a drink if you want, over a point. So I don't think you're allowed to do that. I'm not sure. It'll be a bit weird. So obviously you've chased up the school and then eventually the school say, right, we sent it. Brilliant. Done. Right. So I've done my bit. You've done your bit. Fantastic. Then You've got to check that the whoever you're applying to has received it.

Jess

This sounds ridiculous, but it's so true.

Mark

Don't just assume it's got there. There's like, you know, even if you've hand-delivered it, that might not have got to the person that needs to get it, and it might not even be in the room that they're in. So you have to then check that they've received it. And that is easier said than no, because as we've established, some people, cams in particular, do not answer phones. It's just I d is it a policy? Genuinely It's a genuine question. Is it a policy?

Jess

I have never had the luxury of dealing with cams.

Mark

Okay. Oh, you've got that to come.

Jess

Yes. I have not dealt with them yet. But what I have is with the central SEN team in the local authority. So at least there's a SEN caseworker who was working with Try and get her EHCP. Now, this person is lovely. She is really lovely. I would like that on the record. I really like her. But she's also very, very busy. And I'm pretty sure when she arrives at work, she takes her phone off the hook Because every single time I ring, it rings out once and then goes straight to answer phone.

Mark

Oh, right, okay.

Jess

Every single time. And I can ring up to fifty times a day sometimes when I'm in my desperate state.

Mark

No wonder she's taking off the hook, Jeff. I'd take it off to give you a ring of me 50 times a day.

Jess

Not 50 times to have like 50 chats.

Mark

Okay, okay.

Jess

Right, okay.

Mark

Thanks for clarifying.

Jess

But yeah, I mean, it's. Maybe it's the thing that anybody that works in this arena does.

Mark

I just wanted to clarify for people who don't know what CAMS is, because we do have people who are maybe not in this part of the process or they might be overseas. So CAMS is child and adolescent mental health servic And it's basically the institution in the UK that you're asked to entrust your dreams of finally getting some kind of support for your kid. And what they do is they work with you to take those dreams and then grind them into a fine powder through a mangle of increasingly absurd procedures and bafflingly pointless red tape.

Jess

That's a really accurate description.

Mark

Yeah. Yeah, and by the end it's us parents need support more than the kids ever did. That's what CAMS is, just so you know So you you finally you've got acknowledgment that whoever you're applying to has received All of the paperwork they need. Okay. Sometimes the school won't submit thorough enough evidence. That's happened to us before where they just went, oh, yeah, we didn't quite get what we needed from the school. So what did they do? Do they go back to the school and say, can you? Submit it. No, they fucking bin it. They bin it and go, Sorry, we haven't got enough evidence.

Jess

Start again.

Mark

Start again. It's like the worst board game. I'm just I'm nearly there. I'm nearly there for getting just not even the finish, just to get to the next level. No, start again. Oh, so infuriating. So that we had to we had to resubmit everything because the school didn't quite fill out all the all the evidence that they needed at the time Yeah, one of the most infuriating things is that they don't just open a file for your child and go, anything that we get related to this child, put in this file. We'll stick it in there. It's a folder. You know, like technology exists now that you can have like terabytes and terabytes of storage. Just open a file with my child's details in it, and anything you get, pop in there Then, if I have to come back, you you've got it all in front of you. Don't ask us to resubmit it, because as we've already established, I I'm at I'm at the end of my tether as it is. The last thing I want is to have to submit stuff that I've already done. A hundred percent. So you eventually, at some point, there will be an acceptance that they've received all of the paperwork that we've requested. Which is fantastic. That's like a major win. Okay. And then the next step is you then have to wait for them. to read the paperwork. This isn't an acceptance that they're doing anything with it. This is just an acceptance that they've received it. So they then they go, Right, brilliant, we've got the paperwork. We'll get around to it. We'll let you know. Um, yeah, again, yeah, no deadlines, no time lines for any of this shit. It's just like at some point maybe a year or so, then we'll send you a letter to say we've read it. And best case scenario, if they've read it, your child is now on a list. They made a list. How many other children on the list? Oh, don't ask that. They're just on a list. Great. And is that the final list? No. Not even that. Sometimes they're on a list waiting to go on another list. Um so uh eventually if you're lucky you're on a list and when you're on that list, that is that's where the phone calls happen, right? This is when you're phone in fifty times a day, or you ba this is the thing that Tam Tam was impeccable at, is ru like monthly checks. everything that we applied for would phone up and go, Hi, just check in we're still on the list and where we might be on the list and how close we are to maybe moving up the list. And what Tam was amazing at was being really friendly and being civil to the people at the end of the phone. Because let's face it, it's not their fault. You know, I think that needs to be said, that the they are working in a fucked up system The system is broken and they are doing the best they can with no resources. They are overwhelmed and under-resourced. So, the last thing they need is for you to get angry. But the hardest thing to do is to stay composed. Yeah, exactly.

Jess

Because you're just like this. The number of times I've said on the phone. With the greatest of respect. And I just I actually had a phone call last week when I said I don't mean to be rude, but I can sense you're getting frustrated with me.

Mark

You said that to her.

Jess

Yeah, because she was trying to get me off the boat because I got bored of phoning this person. 50 times a day, so I called the central line and asked to speak to her. So they kind of were ready to follow me up.

Mark

Back door. Nice. Nice.

Jess

I was like, I'm really sorry I'm not getting off the phone until you've answered the question. And she was just like. She will get back to you by the end of the day. And I was like, okay, but I don't want to get off this phone until someone's given me an answer about the lost paperwork I referred to earlier.

Mark

Yeah, yeah.

Jess

And it's not their fault, but also like. You've got your like child at the heart of it. Like, if you just back off and become like the nice person, or not, it's not necessarily the nice person. The person that's just a little bit more relaxed and doesn't chase all the time. Or believes them as well.

Mark

Believes them when they say it's in the patents, in the post, or you're on the list and we'll let you know. And that's the hardest thing is to. be a bit kind of spiky and go, I'm not going to take no for an answer, I'm not going to be fobbed off. Um and that is, you know, that is frustrating. But but then I guess in a way that's probably where neurodivergency actually helps your situation. Heidi Mabel was uh was saying this in the in the last episode. Heidi was saying that she gets into a meeting and goes, Here is what I'm here for, and then just lists the demand I listened to that episode.

Jess

Yeah, I remember he said that. But you have to do that because I think I naively went into all of this when I started realizing that we were going to need some support and we were going to need all this stuff. I thought that there were going to be professionals waiting, ready to help. Ready to help her, ready to help me. ready to like give us suggestions. And that could not be further from the truth. Like I've sat in so many meetings with school or with other professionals where they've said, what do you think we should do? Like I don't know. Like, I've tried everything and it's not working. I help. And so if you don't go in with a, you know, this is a list of stuff that I want, you just have a pointless meeting.

Mark

It is, that's when it when it becomes sort of quite frustrating, when you finally get in front of someone. And like you say, it is underwhelming. It's like you've just you finally glimpsed behind the curtain. It's like seeing the Wizard of Oz, right? When behind the curtain, you're like, oh, you're just a tiny old man who's confused and lost. Oh, I I had this meeting um for for transition for Jay to go into secondary school And similar to you, we're applying for a kind of specialist setting. And we needed to make the case to the caseworker. And they were they came onto the phone and I'm sure are great at what they do. But it was so obvious how overwhelmed they were because they turn up and they're working remotely, so they're in their house And she started off by going, Yeah, I've got someone else's dogs running around here. I was like, What? Why are you telling me this? And whose dogs? And what Why are we starting with questions about you? This shouldn't be the way things are are working. But there were dogs running around that were distracted Her, she didn't have the paperwork in front of her, so she's sifting through all the hall of papers, like going, I'm still here somewhere. Like, she'd not read it either, um, which is again quite frustrating. And so we're waiting for her to read the paperwork. And I'm just thinking I just end up feeling really sorry for her. Just going, I think you're the one that needs support more than we do. You know, I d I like I say, I'm not that have you ever heard of Hanlon's Razor?

Jess

No.

Mark

This is this is the saying, which I I love. It's like, never put down to malice. What can be more easily attributed to incompetence. And I think you can adapt that for basically never put down to malice what can be more easily attributed to underfunding Or the system being overwhelmed. And that's it. You know, it's very easy to assume that they're just there looking at our applications and going, you'll never get support. Exactly. It's not. They're not. They can't even find your application. They've got too much. You know, they don't have the support they need. We're having. We're going through a significant mental health crisis in this country, and we are unfortunately saddled with the government that are not prioritizing that

Jess

In any way.

Mark

And this is the net result. And it's frustrating for everyone

Jess

Yeah, they they've most of the people that are working in this area went into it with all of the best intentions and they went into these jobs because they wanted to help. So they must be equally as frustrated as we are that they can't and that their hands are tied.

Mark

Yeah, absolutely. Yeah. I've just thrown away a bit of paper that I needed. In a fit of drama. Let's assume that you've done everything you need to do, right? And that your application is successful. And everyone celebrates, and that's amazing. As we did with Jay when he got his autism diagnosis, like we're not going mad. Amazing. Yes, our our suspicions uh have been recognized. And then you look around and then we looked at Otto and went Oh fuck. We've got to do it all over again. For another child. Oh, really? And also complete again, completely different Completely different behaviors, completely different presentation of their condition. So you've got to do it, it's not like you can copy and paste it and go, yeah, ditto for this one as well. It's same diagnosis, completely different set of circumstances. So you've got to. do that all over again. And very often that is the case, right? And you know, we've done all of that with Otto, and this is the time where Tam and I are now looking at India. And going, I think there's probably some in there as well. So we have now have the third one going through the process of just knowing and I don't know how much of that sort of reticence was well, firstly, because India presents very, very differently from the boys. But also I think part of it is we don't we just didn't really want To believe it because, um, like, I don't think India needs any as much support as the boys in that sense, uh, and hopefully not. But, um But I think there was definitely a reluctance to end to open this whole Pandora's box of admin again and launch ourselves back into it. But we are so so we started the the autism assessment process with India and she's now two hundred and eleventh on A list. I don't know which list. We started it at two hundred and eleven.

Jess

Have you had so when we first referred the autism diagnosis, her referral was rejected. So that was sent back to us saying, no, we don't we don't think she is.

Mark

Okay.

Jess

So we had to do the whole thing all over again because I knew. And you just have, you basically have to put like a better business case together. I'm like, nothing's changed.

Mark

I love the fact that you describe it as a business case.

Jess

That's absolutely.

Mark

It's like Dragon's Den, isn't it?

Jess

It is. That's what I say to everybody. They're like, What do I I've got a friend going through it for her daughter at the moment, and she's like, What do I need to put in the first set of forms that she's got for the the GP has sent it off And then they've got these forms back. And she's like, it's just the initial forms. I assume I don't need to put too much in. And I'm like, oh, whoa, whoa, whoa. These are the words of someone who has not done this before.

Mark

You put everything in.

Jess

You put it all in. And yeah, because we got it back and then had to do it again. And you just need to like find extra evidence. And you're like, when they first start talking about evidence, you're like. What do you mean evidence? Like, what's evidence?

Mark

Everything is everything. So, Tam and I did this. We logged our kids' behaviour from very early everything that was represented, everything that seemed neurodivergent. We would log it. We had like a Word document and be like, you know, on this day, this happened.

Jess

Which again is horrible.

Mark

It's fucking horrible to think that you're like telling tales on your kids. Do you know what I mean? Or that you're logging, you're logging all the worst bits about them because you don't put like, you know, today we had a really fun game of like leapfrog or whatever it was. You don't put all that shit on there

Jess

It's only the negative stuff, and it feels horrible.

Mark

But when the time comes and they say, Have you got evidence? You fucking have it, it's all there. You can do the admin now. Good luck.

Jess

I had a Google Doc that I just used to like chuck stuff in all of the time any time I could think of something. And that's when it just became overwhelmingly obvious to me because I saw it all down on one bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little bit of a little

Mark

Yeah, 'cause you miss these moments when they sort of build up and you move past them and then you look back at it and go, Yeah, you know, actually if I

Jess

I don't know if you had the same thing, but you know, we had so many people being like, oh no, she's fine. Firstly, I know she's fine, she's just autistic, but like. You know, you just and she was our like first child. So I just thought, oh, maybe, maybe this is just what everyone's doing.

Mark

Yeah, you just can't convince yourself.

Jess

And then I read this document, and I'm like. She, I forgot she used to do this. She used to bang her head against the cot bars over and over again to fall asleep. Really? Like, that's how she used to fall asleep. Like, quite violently. You know, when she was like, when she first started being able to roll over? Bang bang we used to I remember I ca I think I was like having a phone call with a friend or something outside her room, like trying to be quiet. And she was like, What's that noise? and I was like, Oh, that's just Elise whacking her head against the cock bars. And like, it might, that was just normal because that's all we'd ever known. But then when you like, you know, that was one thing. And when you've got all of these sort of quite bizarre traits when you think about a neurotypical child, you're like, oh, yeah. That is quite obvious.

Mark

We have been through the life of an application. What we probably haven't acknowledged is that that That is one application for one level of support. You could so I just did a very list a list Just a brief list of the kinds of support that that you might apply for. It's ASC diagnosis, ADHD diagnosis, DLA application, EHCP application. the local well being service, local family intervention services, blue badge parking if you choose to apply for that, occupational therapy, play therapy, counseling, sleep clinic admin This all start I mean, it's fantastic that there are services out there, but there's not enough of them. As in as in as in you know, there's There's too much demand for the supply of these services. And every single one of those ones I've just mentioned, you have to follow the process that I outlined for the life of an application for every one. Now, what that means Is that you are juggling multiple different applications at the same time? Because you might be doing an ASC diagnosis and an EHCP application and something from your local well-being service and your family intervention services. And you're like trying to juggle all of these different things and making sure that you know which phase of the process that is and who you're talking to and who's now your sworn enemy and like all you've gotta basically you've got you've got a really You've got to keep on top of it, and it's absolute headfuck.

Jess

Yeah, oh my gosh, it 100% is. And like you said right at the beginning This is just like this is actually this application thing is actually only one part of the additional admin we have on top of just the regular admin that we weren't even going to mention. Like it is, yeah, a lot.

Mark

Tam once received a text that said, You have an appointment at this place on this date, at this time, and that was it. It was a text. No more information, right? It's like a bagdrop for a spy network. Meet me behind the bus station. I'll be wearing a black hat. It's bizarre. So, Tammy's trying to work out which child. It could be for Tam as well. I mean, Tam's. I'm a stronger could be could be for anyone of our family, let's face it. Um and so it it's it Because they just assume that you're just doing one just one application for one person. No, no, we've got a lot of people. I don't even remember all of it. Yeah, we're spinning a lot of fucking plates right now, guys. Give me a little bit more information, please.

Jess

Well, I got a letter once from a service that I'd never heard of before saying thank you for the referral for your daughter, but we feel like they would be most suitable to go to cams, so we've referred them to cams. And I was like, what is this referring about? And I kind of have no recollection Yeah, but thanks very much. Now we're with CAMS. For what I don't know, and I don't think I ever actually got to the bottom of that, to be honest, that I couldn't really be bothered with the headache. So I just she's with CAMS for some reason. I said I haven't had anything to do with them. She's on a list. One of the lists.

Mark

Congratulations. In about twelve years' time, you might actually hear back from Cameroon. So once you actually receive the support. Right. Your application has been successful. Congratulations. But this is not a course for celebration, because once you have that support in place there is more admin on top of that. It's not just like, right, that is it. My work here is done. My child is now going to be cared for by the system. No, that is not how it works. What you fight so hard to get in EHCP. Right. You then receive that EACP, which is obviously you need to then go, yeah, yeah, you need to yeah, you need to change this and this isn't quite right. And you know, so you fight for that, you fight for the sort of modifications so that it actually fits your child. And then you have to follow up the school to check that they're implementing the stuff that you've put in the ECP, to check that they're doing what they are legally required to do, which again is a It's a big old job, isn't it? So that's one of them. There's also the training. Have you been on lots of Zoom training courses and workshops?

Jess

I started off being really enthusiastic about this. I quickly learned that I just. Can be bothered together.

Mark

Because they try and sort of let's not fob you off, because I'm sure it it's if you haven't done the research That's quite useful.

Jess

Yeah.

Mark

Because they do that and then present it to you.

Jess

But I've already done that stuff, but I have to do it to take the box. Googled it and figured out the basic strategies and then I don't know.

Mark

I don't know. So you've got to then do that. And obviously I've got a day job. I took a whole day off to do a course that I'd been referred to because I wanted to Show that I'd done that. Do you know what I mean? You don't want to not take the help that's given you in case they go, well, they're not interested in getting help.

Jess

I was like, all the time.

Mark

I mean, I definitely, I mean, I went on a parenting course. Guys, I'm doing all that is expected of me here. And I took the day off, and then the next day, my colleague went, Do you have a nice day off? What did you do? I attended an online workshop about keeping family safe when one of my kids has an explosive meltdown. It was nice. I'm glad I took a day off work for it. It's just what we do. The other thing that you're not quite there yet, because um you're not in the CAMS sort of pathway for ADHD. And that is its own Orwellian nightm The admin around medication, right? So Otto and Jay have both been prescribed medication. So, you go through the whole CAMHS journey, right? And it is an enormous journey to go on, and it takes an enormous amount of time. But eventually, they'll go, great, we'll help you. Now, the only help that CAMS offer is medication. There's nothing else for that. So with Otto, Tam just got a text message on the day, right? No pre-warning letter. Just a text message going, looking forward to seeing at your meeting later. And like Tam's in a supermarket, drop everything. I've been waiting five fucking years for this. I'm gonna I'm going. You know, just like just like burst into Otto's school, like grab him by the find the coat, march him out, and you know, he's massively dysregulated because he gets super, super anxious about well Unplanned events he gets super dysregulated by, and particularly leaving school halfway through a day or going back into school after being out. He he is beside himself with anxiety and he's in floods of tears. But it's like, fuck it, we just gotta get in there. I liken it to it's it's like being invited on a pub crawl with Dame Judy Dench, right? You you're never getting this chance again. You've gotta drop everything and just fucking do it. Just get there because it's not going to happen again. You've been waiting for this opportunity for years. So, Tam had to basically leave the shopping and the trolley and the supermarket and leg it And, you know, and we did it. We got the diagnosis, and that's fine. And they were put on the medication route. And when you go on the medication route, that in itself is torturously long because you have to go to monthly titration meetings, where they basically give you the smallest amount of medication and then go see how you get on And then they come back. Any change? Well, what do you think? Look at him. What do you reckon? He's like literally bouncing off the walls. Yeah, you tell me. Any change? The first meeting. That Tam had. They were like, well, they've both been referred for medication, so bring them both at the same time, right? It's a two-hour meeting. With two kids with ADHD, and they ignore the kid. The kids are not really part of it. I don't know why they said bring the kids along. Right, unless they were just just to call us out to see if they actually were. So Tammy's going through this process for two hours, answering all of the questions The kids are beside themselves. They're like literally climbing the walls. At one point, the guy doing the assessment asked Tam to take them for a walk. To give him a break. It's like, this is my daily life, mate. You don't get out of it that easily. You can sit and fucking deal with this. You brought us here.

Jess

This was your idea.

Mark

Yeah, exactly. What were you thinking? Strap in, dude. This is two hours of your life. I get it at least eight hours a day, mostly longer. So every prescription that we get, every month we have to come back and go and they have to take their blood pressure and their weight. right. And they also then have to ask sort of anecdotally how they're doing on the medications and stuff, right? Which you would imagine would be one meet No, no, no. Two separate meetings, guys. Yeah, we can't do this at the same time. That would be madness. What we need to do is get you to disrupt your child's education twice a month. And it's hard. I hate it.

Jess

Which goes on the attendance record?

Mark

Which goes on the attendance record. But to be honest, I don't give a shit about any of that now. Don't judge my child based on their attendance, man. You're looking in the wrong places. But yes, yes, it's all of that disruption. But also, time I have to take out of Work to go and do it, or time that Tam has to take out of work to do it. These little, you know, it's like, oh, it's only a half an hour session. Yeah, but it's not because I've got to get there and I've got to you know, and I've got to talk Otto down when he's uh massively dysregulated and then I've got to, you know, um get him back in school and then I have to have a coffee and just think about my life for a little bit before going back to work. Um you know, and this is twice a month at the moment. It's insane. And then the the other joy about ADHD medication is that you have to find a pharmacy that stocks the medication that you have, right? Which is, you know, fun at the best of time But at the moment, there is a shortage in the UK of ADHD medication. I don't know if you know about that, Jess.

Jess

Yeah, yeah.

Mark

Yeah, so at the moment, we're phoning around pharmacists like fucking crackhead Just go. What have you got? What have you got for me? You know, if you've got any methophenogate, don't lie to me. I know you've got it right there. I've been through your bins. You've got meth. It's like, oh man, it's the shame of it. It's the furtiveness of just like, I'm trying to help my kids, guys. I'm just trying to help everyone here.

Jess

And they're trying to help me in the process because I can't take it anymore.

Mark

Yeah. There is the unspoken thing as well of fighting for all the support that you can get for your kid, and then you eventually get that support. and you feel great about it. Then you have the problem of trying to get your kid to accept that support. Have you had that, Jess?

Jess

Oh, yes, I have had that. The number of you don't think about this when you go into it, do you? That's not like well, for me, it wasn't on my radar. Oh, yes, I mean, I have it all the time and it's So frustrating.

Mark

Yeah. I mean, we've been through many, many different versions of this one. Jay's was with melatonin. We I mean, we we fought so hard. When I say we, Tam, everything. When I say we, it's pretty much always Tam. um fought so hard to get melatonin uh for the boys because they just were not able to sleep. And we read that melatonin helped a lot. And you have to do a sleep clinic. I don't know if you've had this, if if anyone listening has had this, but y The amount of information you have to provide for these sleep clinics is insane. And you have to, one of the things you have to do is take all stimulation out of their room. It's like, so it's just a bed. like a prison. And you've got to keep food logs of everything that they eat and every everything that happens for the whole day, every 30 minutes. Like, you know, they're going to read through that and go, Hang on a second, that four pack of Red Bull you gave them just before bedtime. Ah, but I think I've spotted the problem, guys. It's back to that parenting course again, isn't it? It's like, I know the basics, come on, give me some fucking credit. And the amount of effort it took to get prescribed melatonin was huge. And then it's like, finally, we've got melatonin, fantastic. And we gave it to Jay and he tasted it. He went, Ah, it's too chalky. No I'm not eating it. And it's like, oh, do you have any idea of the amount of effort it's taken? Obviously, he doesn't. And also, even if he did, he wouldn't care because it's too chalky, and that is the only thing that matters to him So we tried crushing it up and putting it in yogurt. He could taste it. His taste buds are amazing. If he is not a food taster when he gets older, he's missing a trick because he's incredible. You know, he can spot individual herbs in a ragu. He's incredible. So he could definitely taste melatonin in a suspicious yogurt.

Jess

Well, we we don't have it for melato. I mean, I would never go down that route. I could never go down the ADHD medication route either because at least for her entire short life Has so far never taken any medication. She won't can't Calpol. I used to get so frustrated when all my friends And everyone used to be like, oh, kids love Calpol, we'll get the Calpol out. Like, she will not take Calpol. Nothing, absolutely no medication. Antibiotics, absolute nightmare. So she has ear problems. She used to get ear infections all the time. So we'd have to get antibiotics, but she'd never take them. So she wouldn't take the liquid form So then they started kind of um suggesting, you know, put them in smoothies, put them in like juice, put them in this, put them in that. And I was like, she can I mean, first of all, you could taste antibiotics, that's not even Falseleeper, but even like a more subtle thing, there's absolutely no way. We used to then get this little, well, we still do they do um capsules and you can open up the powder on the inside. Um and we used to try and mix that into smoothie. I mean it's like You can't really taste it. Mix it into smoothies or ice cream because that's like her favorite thing. I mean, she would pick it out from anything.

Mark

Yeah, it's amazing.

Jess

It is unbelievable. So yeah, we I mean, I know that's one fight I'm just not even going to bother with when it comes to medication or meladonia.

Mark

So even when you get the support that you need you that's not a guarantee that it's going to actually help. Otto it was it was Otto was different in that we actually got some support for him from a local wellbeing service. Because we were really worried about his anxiety and his kind of self-care and we've spent a lot of time fighting. For the local wellbeing service to kind of do some sessions with him. And we got 13 sessions. And again, it's like 13 half an hour sessions. Again, so it's like half an hour out of school. Cue the anxiety from Arto's point of v So we've got 13 sessions to help with his anxiety, and he was not on board with them at all. To the point that he was So fucking rude. It was, it was like, Otto is so sweet. He's such a sweet boy, and he's so polite normally. But with this person who was trying to help him, he was an arsehole At one point, she's trying to help him articulate his emotions. It's definitely something that he needs help with. And she was going through this massive Pack of emotion cards and going, Can you tell me what emotions you're feeling at the moment? And I wrote them down. These are the emotions he picked out of all of the emotions that he could have gone for. He chose bored, frustrated. Angry, hate, and annoyed. Bless it, the woman was trying so hard to get him to kind of engage with it. And she was like, Okay, well, well, Otto, um, can you tell me what gives you feelings of happiness? And he went, Not doing this And I'm mortified because I'm sort of listening in, and I don't want to intervene because that's not my place, right? It's over to her. She's the expert, right? And normally I'd be like, don't be rud Like, come on. Um, but I just have to sit there and let him do it. And it's mortifying just knowing, just knowing this isn't helping anyone. It's certainly not helping the professional, is it?

Jess

Well, that reminds me, I'd forgotten actually that before she started school, we paid for some private speech and language therapy because speech and language therapists Like on the NHS, just they can do the assessments, but they have no time to actually do any therapy. It's completely impossible to get one. So we paid for some private therapy And this was in Solaris actually. It was when we had Co when like the proper COVID times. So this poor guy used to come with a mask, but because you need to be able to see someone's lips when they're doing speech therapy, it was like this bizarre see through clear plastic mask. Like it was so funny. He looked, I mean, yeah, like he was from another planet. And he was so nice and he was really good. But Alicia wasn't interested in speech and language therapy, so he used to come and he'd sit down and he'd bring all these toys and he'd bring like these cards. And she might do it for like five minutes, but obviously, we've paid for like a 45-minute session. She didn't have a lot of words at this stage, so she used to go to the front door, pick up his shoes and bring them and just put them down next to him.

Mark

You, out, now. I've got three new words

Jess

After a couple of sessions, I was like, I don't think this is working.

Mark

No, it's horrible. Yeah, it is that moment when you have to sort of, when you leave them and you're just like, I'm really sor Thank you for trying. I did that with the one that Otto was just so rude to. I was like, Thank you for trying. You know, we both know this has not gone as expected. None of us have got what we wanted out of this, but thank you for trying. So, talking about going private, because that's one of the things you think, okay, well, going private, that will help. Won't it? I mean, like that will that will cut down the admin because surely it's just a bit it's a bit easier, right? No, it's not, because firstly, well, firstly, you've got to find the money Right. That's the problem. Usually work some extra hours just to get hold of some money because we had to do this with for Otto, who we, you know, we didn't want to wait three years. He was desperately in need of some kind of support earlier on. than Jay. So we had to find the money. And then you've got to do all the research to find a provider that follows the nice guidelines, right? Because the reason is that you you get some private professionals involved to give you a sort of an assessment. And obviously, the end goal is that your local authority will then accept that and give them the support they need based on the words of these professionals. So you have to find professionals That the local authority are going to accept the word of. And they've got a list of people that they go, Yeah, yeah, well, we'll take these people's recommendations. That's fine, but they have to follow the nice guidelines. So you do shitloads of research there to find the people that do it, right? And you find one, and they go, Yeah, we got a waiting list that's as long as CAMS. So you might as well just stick with CAMS. I'm not shitting you. At one point, we got on a waiting list to be put on a waiting list for one private, a private practitioner. It's like This is absolutely insane. And then you go through it, and it was definitely worth doing. It was a really good holistic view. At least they did autism and ADHD at the same time. So, we didn't have to do both pathways. But once a diagnosis is received, then you have to get it accepted by the agencies that you're looking to help from, right? You're looking for help from. And they never accept them at face value, right? So, CAMS in particular will say, yes, we take recommendations from this provider And then sometimes they go, Nah, not this one, not this time. Sometimes they will, sometimes they won't. Depends on which way the wind is blowing. And then they go, No, you've got to now apply for CAMS. It's like, I've just wasted all of that money. You know, and that's when you the next kind of level where you end up appealing. You've been through appeals with the lease, right?

Jess

I have, yeah, for her EHCP, so. When I first applied for an EHC needs assessment, which is the bit that you have to apply for to get them assessed to then maybe get the plan, that was rejected first of all. And so I appealed that, which I was lucky it never actually went to appeal.

Mark

They overturned it like a few weeks

Jess

Okay, I do, I think, miss that a lot before it gets there.

Mark

But you have to basically tool up, don't you? You have to be like, right, I am prepared for this fight. Are you prepared? Are you tooled up? Because this is going to get ugly. I'm going to meet you in a car park.

Jess

Yeah, it's that, isn't it?

Mark

It's like, I am prepared for a battle. Are you prepared for a battle? No, like, because they're not generally, but it's, it's. But that in itself, that just to get to that point as parents is exhausting and frightening because it's legal shit. It's the you know, you're seeking legal advice, you're getting an ombudsman involved To hold people to account for stuff that your child is legally and morally entitled to. It's support that they should be getting. And then you have to bring out the lawyers and the big guns. And it's like. It's horrible and scary, and that's not really discussed enough, I think. No, because I don't understand legalese, I don't understand, but you have to pretend you do.

Jess

It's probably the part of the system that frustrates me the most because I was like prepared for it in my head. It was just part of the process. I kind of knew it was going to get rejected because loads of people get rejected. And I just viewed that rejection as like another step. Yes. I didn't really feel like it was a step back. I just felt like it was a step. I felt like the next part of the process was Appeal, we went to appeal, etc. Whereas for a lot of people, I think they don't really realize that's what happens. So, like a rejection, like Flaws them. And the thought of an appeal just feels like this, like you said, this huge big deal. It's like a legal process. They don't understand it. They're out of their depth. So a lot of people, I think, don't go through the process But like I everyone should because if you're at the point where you're applying for an EHD Playh P, like you said Like, you don't do this for the fun of it. You don't do this because you just want to like frame it and put it on your wall. You do this because you've reached a point where you know how much your child needs something different to what the education system is giving them.

Mark

Now one thing that Tam found incredibly useful. I d I don't know have you ever heard of send family instincts?

Jess

No.

Mark

It is amazing. So so there is a a a neurodivergent parent and a parent a neurodivergent Called Jess Kane, who's on Instagram. And I'll put the link for this in the things. But she became so frustrated with the system and how scary it was and how intimidating and daunting it was. That she has set up a service to help people through this process. And the resources available are amazing. There's like template letters that you can fill out, and like you can subscribe to their service basically. For the duration, and they are like offer 365-day support if you need it. I won't say 24-hour because that would be absurd, but there's always someone available to help you through this process And to help you kind of decipher the jargon and that kind of thing. So Tam subscribed to it and got loads of really good help. Like, we've been rejected. Now, what do we do? And the letter. The letter the letter that we kind of sent was br like it was amazing. The way that it was written, it was like um under regulation 5. 1 of The Send Disability Regulations 2014. You are required to notify me within six weeks of receiving this request. You are in breach of this legal duty on the grounds that more than six weeks has passed. That's the kind of shit you need. You do. Right.

Jess

So that people are just like, oh, oh, God.

Mark

They've got support. They know what they're doing.

Jess

You need to speak their language, otherwise, no one listens to you. Yep.

Mark

And within 24 hours. Tam got a response of sending that.

Jess

Yeah.

Mark

Because, yeah, it's speaking their language. So I can't recommend send Family Instincts. If you're going through this and you're feeling kind of overwhelmed and a bit bewildered by it. uh then check it out because it is something that we've used and has been super helpful. Now, just some blanket frustrations that I just wanted to make sure we're add. One of the frustrations is that forms are in so many different formats Right. There's not one format. There's like could be PDF, could be a web form, could they sometimes need it handwritten, sometimes it's in Word. I wouldn't be surprised if Semaphore is recommended at some point. It's like Can we all agree? Can we just do it on, you know, just a web form? Then we can do that. Or and also, crucially, if I submit something and you need me to tweak it. then I can then log into the same web form and tweak the things that you've flagged. I mean, this exists, this technology exists. Okay, it definitely exists out there. Can we just sort of bring things up to date a little bit instead of having so many different ways of doing things? Because The the frustration is that you have to fill out very similar information for every form, but it's never the same. It's never in the same format So, you can't just copy and paste. Oh, I did this for them. So, I'll just copy and paste it. Every single one is a new adventure. So, yeah, that's one thing that would definitely help things. And then the other thing is that the process very often takes so long, and we've had this before: that the process takes so long that when you actually finally get support. They go, congratulations. You know, you've made it to the top of the list. Wicked. I've made it to the top of the list. That's amazing. However, it's been so long since you last submitted your form that we need you to resubmit it because your child may have changed beyond all recognition. Have you had that one? It's like, are you shitting me? I thought this was it. I thought I'd made it to the end of level boss. Fucking hell.

Jess

Oh my god, that is so true.

Mark

I mean, there was one time that that was when Tam actually snapped Tam just lost it. Like, I'd never seen Tam like this before, but they were just like, I can't do this anymore. I've been asked to resubmit something that I've already submitted, and I can't I just need you to just do this form for me. Please, just do this form. I don't normally ask you, just do this one form for me. And I was just like, Yeah, fine, I got it. No problem. I'll do it this evening. So I sat down in front of the T V, got my laptop out and within an hour I was sobbing. I was like, I can't. I can't. I don't know. What the What do I put? I take I've already answered this question in a slightly different way. I can't put the same thing. For God's sake, I was like, it took me well over four hours. to do to do that one thing uh and i also i had the original as well so i could have copied it i could have copied and pasted some of it and i think i did but even It is it is a fucking nightmare, and people need to know this. And I'm hoping that by us talking about this It's certainly been therapeutic for me.

Jess

Oh my gosh.

Mark

I'm hoping it's been therapeutic for you.

Jess

Phototherapeutic.

Mark

And I'm really hoping that people listen. Because I don't know. Like, we're, you know, we're quite. far into this recording. And it's it's basically two people moaning about shit that is really dull and really tedious. So I don't know what kind of episode this goes Is this going to work? Or if people enjoy listening to it, or if they're just going to turn it off halfway through, it's massively triggering for them. Probably a bit of all of that. But I feel like I feel like we've kind of at least got a lot out of our chest.

Jess

Oh, yes, I feel much better. Much lighter.

Mark

Yeah. So yeah, so the final thing is just to kind of to put the admin to bed, I just want to do a shout out to any parents of neurodivergent kids who's going through this because you're not alone. I think that's the important thing to realize. We're all going through this, and it is a fucking absolute horror show. But you are amazing for doing it. Keep it up, keep up the fight.

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It's not all rubbish.

Mark

So, hopefully, we're going to look on the positive side a little bit now. We've been talking about frustrating things for quite a long time now. This is the more positive side. of the podcast. And first up, we're going to be looking at neurodiversity champions. I mean, one of the neurodiversity champions I've already mentioned Obviously, is send family instincts. I'll put the details of that in the show notes, but they are excellent specifically for the kind of admin support side of things. Do you have any neurodiversity champions?

Jess

Sure, I do. I full disclosure, so I'm an advisor for a company, but I think what they're doing is really amazing. are they're called Hebe, and they have they're basically have built an app for parents of children with additional needs, disabled children or children with kind of conditions. To support parents to manage their care. So it's like a centralized hub almost where you can go. And it's really useful and topical when you're thinking about admin. Does it make admin easier? Well, you can go and you can like upload all of the documents. So one of my issues is I never know where to find all of the stuff. The latest DLA stuff or like, you know, the assessment forms or whatever it might be And you can upload all of your documents in it. You can put appointments in there. So obviously, you can use your own calendar for appointments. But if there's somewhere you want to go just to check those kind of things, you can Kind of add how your child is day to day so you can monitor kind of their behaviour.

Mark

Oh, so you're logging, it's a logging app as well.

Jess

Logging everything.

Mark

Yeah, you can see authentication, whether they take it, when they need to take it.

Jess

And there's also like a resource hub. So they've got loads of resources on lots of lots of different parts, like you know, like supporting your child, supporting you as the parent carer, how to navigate the HCP process, how to get the right education. Loads of stuff. It's really good.

Mark

And the he be. How do we?

Jess

H-I-B-I.

Mark

Okay.

Jess

Yeah, really good. Really, I-I-I Use it. I think it's really helpful.

Mark

Definitely check that out. It's really cool. Excellent. I think also I want to mention your organization, differing minds, because that you you're literally neurodiversity champions. You're championing neurodiversity in the most wonderful and positive way that there is of like actually, you know, once when when our kids are not kid They're going to be grown-ups. And what they're going to do, you know, it's a concern of everyone. What are kids going to do when they're grown up? Well, you know, I don't want them to just be ticking someone's diversity box.

SECTION INTRO

I want them to thrive and I want them to help a company thrive.

Mark

And if you can appeal to businesses just on the bottom line, they're going to earn you more money because they're doing stuff that better than other people can. I mean, that's incredible. So.

Jess

Exactly.

Mark

Tell us a little bit more about what you do.

Jess

We have a variety of services, but at the moment, most of it is talks and training sessions for employees in organisations. So we do sort of general awareness raising so people understand what it's all about and that it's not a scary topic. And actually, it's a really good thing that we all think differently. And like you said, it can improve an organization's bottom line, productivity, efficiency, all of that good stuff. And we also do kind of consulting, coaching assessments and things like that. So in general, we're just improving trying to improve employment opportunities for neurodivergent people and also improving Or the reason I set it up was because I feel like I've been enlightened by learning more about my daughter and by learning more about neurodiversity. And I want everyone to experience that because I think it makes us all better people.

Mark

Yeah, absolutely. Absolutely. So differingminds. co. uk. Again, I'll put the link in there. And you've got a YouTube channel as well, haven't you?

Jess

We do, yeah.

Mark

That'll all go in the show notes

Jess

Awesome.

SECTION INTRO

Tiny epic wins.

Mark

Okay, so um we'll get on to tiny epic wins 'cause uh it's uh it's always good to celebrate the link Little things or little to other families, but pretty massive in our households. Have you got any tiny epic wins?

Jess

Oh, let me think. Yeah, lots. I mean, they happen, don't they, all the time, and you don't really even think about them or you don't register.

Mark

But I think That's kind of why I wanted this section, so that people could go, Oh, yeah, that is a win. I'm taking that as a win.

Jess

Well, I mean, one for us would be we've got ourselves in this situation where has an ice cream after school every day. So today, as you will be aware, was an extremely cold day.

Mark

Yes, it was.

Jess

She will have an ice cream even on a day like today. Because ice cream is one of her safe foods. I think it's like sensory-wise, is fruit gibbs for her. It really regulates her So we have gone past the point of worrying about how many ice creams she's eating, and it's absolutely no longer a treat. It's just part of her regular daily di So if we have a day where she doesn't have one, she doesn't feel like she needs one or she says no or she doesn't ask for one, I mean, that is a huge win for us. Because we can like see a world where it's not You know, I'm not sure.

Mark

It's got a crutch.

Jess

Yeah, exactly.

Mark

Yeah, that's great. And it's a sign that she's doing all right

Jess

Yeah, exactly.

Mark

She doesn't need the extra regulation from frozen goods. Yeah, I'll take that. It's definitely a tiny win. We had a tiny win. This, I mean, Jay has been super dysregulated at the moment. He's going through a really rough time at the moment, and we all are by extension. And he's not really wanting to do much. And obviously it's important that you know, we will need him to socialize and just experience other things. So Tam booked him on to a Dungeons and Dragons session for kids after school, and he was resistant, but he went. I don't quite know how Tam managed to talk talk him into it, actually. They did an amazing job. So again, very low demand. I was like, well, let's just go and have a look. You know the place. So we'll go and have a look and see what it's like. And he went there and he sat down for his first ever Dungeons and Dragons session And he loved it. And it was like, oh, such a relief because he's been so sort of negative about so much stuff at the moment. And he's sort of I think school is dysregulating him a lot. So he's lost this the spark in his eyes that he usually has, this glint in his eye when he talks about something exciting. And he'd lost that. But then he came back from that and I was like, Tell me about your character, Jay. And he just came alive again. That's like, oh, we got him back for a little bit.

Jess

That's so nice.

Mark

And so he's agreed that he's going to go every other week. And that's like, that is a massive win for us because he's been in a bit of a low place. And. Yeah, so so that was really nice to see. So I feel really good about that.

Jess

Oh, you should do. That is really good.

SECTION INTRO

What the flip

Mark

So the what the flip section, if you haven't heard this before, is those sections there your neurodivergent child will say or do something that will baffle you beyond all measure and you just go Um, and you know, this this is the place to share that kind of thing. I don't know have you had any what the flip moments recently, Jess?

Jess

I've had so many, but I just can't think of anything of relevance, to be honest. I think it's just blended into too much of my life to become that.

Mark

Yeah, my life is a whole what the flip.

Jess

Just your waste.

Mark

Yeah, so one that Jay came up with recently. I can't even remember what the context was, but he just went, I need to rest my feet. I've been running around in celebration and fear all day. Celebration and fear. Okay, they're two very different emotions, but okay, you rest your feet. You rest up, Jay. Another one he said, which I overheard it wasn't actually aimed at me. He went, Mummy, you are the heart of the family because you bring life and love. Daddy is the gallbladder because he brings bile It's like, whoa, dude. What is this? Brutal. Brutal. I mean, you know, medically, it's absolutely spot on.

Jess

I mean, you can't argue with that, but the sentiment is pretty, pretty hurtful, though.

Mark

Like I say, he's been going through a pretty rough time at the moment, so he's been quite negative. And what another one he said, we were in a park, he went, I want to find the cutest, most adorable squirrel and snap it like a twig Oh man. Yep. Didn't see that one coming. And then the final one, it's a slightly more upbeat. He went. When there is a dog rebellion, this is where it's going to start. When, not if there is a dog rebellion, when there is a dog rebellion, because we all know it's on the cards. This is where it's starting. My guess is that Jay's going to be on the side of the dogs. And that's it for the show. Thank you for listening to the show. If you've made it this far. Congratulations, it feels like an achievement in itself. It's been a lot we've had to get off our chest. So yes, thank you to the audience for listening. Jess, thank you so much for coming on and sharing your neuroshambolic household and your life with us. What I would say as well is the usual stuff to listeners. Please spread the word about the podcast. It's starting to pick up traction. We got some people listening to it in Kenya. So so something's working. Hi, Kenya. But if what I would ask you to do, might ask for this pod, is if you could possibly leave a star rating for it. That'd be really good, because we've only got a few. We've got loads of people listening on Apple Podcasts and not many star ratings. So uh and it's not easy to fi uh to find the way you do the star ratings. You've got to scroll past all the episodes and uh like it's just below the trailer. If you want to If you want to give it a star rating, obviously, if you want to give it five stars, that'd be amazing. If you don't want to give it five stars, it's probably too much effort, don't bother. But if you could, that would be great and spread the word. Other than that, we're on Facebook and Instagram and Reddit and Threads. So check us out there. If you've got anything you want to ask us or any topics you want to suggest, then email us at hello at newoshambles. com and we'll see what we can do. Other than that, all that remains for me to say is Have a nice life.