The nightmare of shopping | Helen Stuart

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode thirty-seven of Neuroshambles. As ever, it is a pleasure to welcome you aboard, you magnificent yet frazzled humans. I'm going to try and keep the intro brief because I got told off recently by one of my listeners. Who said that the whole thing is too long, and can I just trim it down a bit to about half an hour so it will last his commute? Um, I mean, I'll be honest, it's very unlikely that will ever happen because I like to whiter on about stuff with my guests, and I don't wanna kind of keep things too brief because we need to navigate different conversational bridalways, right? That's how these things work. But point taken I'll try and speed it up where I can, and for now I can speed this bit up by saying we've got a new guest, a great topic of the week, some neurodiversity champions, tiny epic wins, and what the flip moments. So let's go Meet the guest. So this week's guest is someone who contacted me via the socials a while ago to share a little glimpse into her own neuroshambolic family. And when I read it Well, I thought I'd got a lot going on at my end, but hearing tales of her setup made me realize I've got it pretty easy, I reckon, by comparison. So when she offered to come onto the podcast for a chat, I jumped at the chance, obviously. So without further ado, I am delighted to be able to welcome aboard. It's Helen Stewart. How are you doing, Helen?

Helen

Hi, I'm as good as we get at the minute, thank you. I do believe I've adopted a Norwegian phrase that when they ask, How are you doing? the response is I'm up. and not crying. So I'm up and not crying. It's so suitable.

Mark

Up and not crying. It's so yeah, that is so appropriate. Thanks for introducing me to that. Tell me about the Neuroshambles in your household, Helen.

Helen

So, yeah, there are up to seven of us who could be here at any one time. There are actually eight of us. So, the my husband Matt. We have six children between us. We're a blended family. Some of them are adults now. When we got married, I had the eldest three already. He had the next two. and then we've had one together. They have varying diagnoses and needs. There's only one that is undiagnosed, and we're absolutely certain That he's ADHD.

Mark

Right, okay.

Helen

Never really cared because it it didn't bother him enough, and we had enough strategies and knowledge in the house to just crack off.

Mark

Yeah, I guess to mitigate some of the some of the challenges he might be facing.

Helen

So we suspect that I'm probably um autistic um ADHD and PDA.

Mark

Right, okay.

Helen

And that's only really come to light since having all of these children. My husband's on the pathway for diagnosis for autism and ADHD. And between our children, we have I made a list, I made a list of all their letters that they have behind their names. It's amazing. So we have Autism, ADD, ADHD, PTSD, Tourette's, PDA, ARFID. We're looking at PANS also inflation, which presents as OCD at times. She can become this is for Katie, our youngest. the one that we've had together, she's seven. She can become hysterical, inconsolable. She's the most complex My next one, she's twenty. So Elise is Katie's PA six hours a week. So she's PA for her younger sister. So although she has probably ADHD, she's definitely autistic. She has Tourette's and she struggles with anxiety. She's the one, she's the one with the best fit and the best ability to help me with Katie. And Katie has such a strong relationship with her, it's amazing. My eighteen year old has a great relationship with Katie also, but it, you know, is hardly ever here. No, to be fair, he helps me when he's here. but he's just a busy guy. Then my stepchildren are fifteen and thirteen, um and obviously Kate is the youngest at seven. So it's quite a complex set, but it it's Our parenting is very dynamic, I think is the word it's a very important thing.

Mark

That's such an exceptional way of describing neurodivergent parenting. Dynamic and improvisational.

Helen

Yeah, yeah, it has to change according to the needs at the time. So, you know. If we're doing badly as parents, if Matt and I are just struggling and we're in a tough time, then we drop any thought of functioning even. Functioning there's not a thing. We're just surviving. We might just survive for a while. Give it a little bit. Give it a I don't know, a few hours, a few days, a few weeks, maybe some months.

Mark

Up and not crying. That's the benchmark.

Helen

We'll be back later, you know. business as usual in a bit, but we've both been burnt out. And then as if we've not got enough to do, we've decided to set up our own business.

Mark

So now we're doing that as well. So given Katie's home educated. Why not? Why not add some more stress onto the mix?

Helen

Oh, yeah, right. That's only a bit extra, isn't it? And now we can educate other people through the business about neurodiversity slab. So yeah, Katie comes along with us to business meetings and to presentations and to look at rooms and make decisions. And she's doing a bit of business studies in a homemade.

Mark

Nice, get her working. They used to put them up chimneys. No, give them a PowerPoint and a spreadsheet and they're away. All right. Well, thank you for introducing your setup to us. There is a lot to discuss for this topic of the week, so let's get cracking.

SECTION INTRO

What's the topic of the week?

Mark

So this week's topic of the week is another of those tasks that we have to undertake with our neurodivergent kids because it's unavoidable, and that is shopping. Because we all need to buy stuff, whether that's food or clothes or more fidget toys to add to the burgeoning collection. You can't escape the fact that at some point we're going to have to go into a shop with our kids, find what we want, pay for it, and get the hell out again as soon as possible. And obviously. Whereas doing that with neurotypicals is no doubt relatively painless, I think the experience of doing it with overstimulated and dysregulated neurodivergence in tow is a chuffing nightmare, I think, is the right description for that. So I thought it'd be good to pool our collective frustrations and dissect them for the amusement of others out there who are no doubt experiencing the same thing as us. So firstly, I'll start by saying that we don't go shopping for enjoyment with our kids, do we? It's not like a pastime that we choose. It's because I understand that For neurotypical families, that is something that they do. They might like to think they'll go and spend an afternoon at Westfields or Blue Water or any of the other mammoth shopping centers out there. They'll browse shops at their leisure and maybe get a Bite to we it's like I can't think of anything worse.

Helen

I used to do that once upon a time. I used to take so I was a single parent for a little while to my oldest three children. I used to take them shopping. We'd have a great time.

Mark

Okay, we'd just browse, we'd have fun.

Helen

It was wonderful. They were all well up to the bottom.

Mark

So, but you used to go shopping with them, and it was fine.

Helen

It was okay.

Mark

It was enjoyable.

Helen

It was fun. We loved it.

Mark

Great. Not without it.

Helen

That sounds wonderful. And this is the interesting thing, right?

Mark

Because I think there are some neurodivergent kids. So, like, with my lot, really. Otto I could do that with to a degree. Jay absolutely no way. Like like a hard no Maybe it's a PDA thing. I don't I mean, I think it's a sensory thing, I'm not sure, but I think there's definitely an element of overwhelm there. And it depends where they are at that point in time, but also it depends on their profile and whether they have particularly sensory needs and that side of things. So it is on a case by case basis.

Helen

Definitely. I mean, with Katie, I mean, it's just the case that shopping is not an event for Katie. It isn't something she should ever do. It's not really suitable. However, as you've said, sometimes just occasionally don't have a choice, and we've got a lot of experience of trying it before we've come to this realization that it's not the thing for her. She has two to one care at the moment quite a lot, not all of the time, but a lot of the time. But especially if we have to go shopping. So I was explaining to her today that when we go shopping, like I need another adult with me because I need to support her. And if she is in a moment where she needs all of my support then it's likely that I need another adult for some support for me. And then my eighteen year old son, Scott, pipes up when parenting becomes a pyramid scheme

Mark

It's ridiculous, but it's true. That's the thing, right? If you've got access to that extra adult, can't they just go and do the shopping for you? And you just stay at home

Helen

Well, you'd think so, wouldn't you? But then she gets wind of it and then she's like, But you're buying it for me, and I want to speak of it and I want to come and I want to. No, because You have a meltdown if you go because it's too much and it's overwhelming. But you have a meltdown if you stay at home because she wanted to go.

Mark

Oh, so she actually does want to go, because this is the thing with Jay. If you say, Right, we're going shopping, do you want to come? He's like, Absolutely not. And sometimes you we have to, because again, you know, I'm a solo parent, so I have to, you know, we have to move as a pack, right? A lot of the time. So that's when it becomes a bit Stickier, unless I can arrange for someone else to be in the house while we're doing that. But you're saying that Katie actually wants to go, but just hates it. Can't handle it. Right, so does she not realize that she can't handle it? As as in, does she sort of forget that every time it's a shit show?

Helen

Yeah. She's like she doesn't even realize at the time because that's such a I hate to say it, it's such a normal state. For her at the moment to say, I know for a long time to be that dysregulated that frequently, and whilst you know, we have good days and bad days at the moment. most days are a bad day for her. But because she's so often in that overwhelmed, upset, overcooked state and screaming, crying, not knowing what to do with herself she doesn't really kind of twig that it's the shopping that that's overwhelmed her to put her in that position 'cause she can get that overwhelmed at home.

Mark

Okay, so it's not so the overwhelm isn't actually the the variable

Helen

No, the variable there is. Do I want to deal with that at home or do I want to deal with it somewhere away from home where I've not got all of the stuff that I need to help me handle? Ah, the audience can do what you like. I mean, I know you've said it a few times, I haven't either that you're you're bothered by the audience. For me, if the audience wants to watch, ah, I don't I don't care any, I'm beyond it.

Mark

Yeah.

Helen

Absolutely beyond it.

Mark

That's a very healthy position to be in. I wish I was uh I was.

Helen

I ca I'm getting there.

Mark

I'm getting there slowly.

Helen

I don't know though whether whether I have some sort of RBF about me when I'm shopping because nobody ever really comments or or approaches with any kind of complaint about the noise or just all these things all the parents say and I'm like Do people really are people really that rude to you in public? Are people don't do it to me? Do I just look that scary?

Mark

Probably.

Helen

Maybe I'm just oblivious to it. Yeah, do you just zone it out?

Mark

And maybe, yeah, you're just kind of hyper-focused on the situation, I guess. So, as we've discussed, we don't go shopping for enjoyment or for us with the kids. It's much more that functional type of shopping that we're talking about here. So, the one that I really wanted to focus in on. is supermarkets because you know supermarkets can be uniquely overwhelming for our kids. So any any of the my guests that I think I've ever spoken to about their kids having a meltdown in public or being overwhelmed in public. The common theme is always supermarkets. It's u it's usually like in the In the aisle of a supermarket where people are judging you and you know and making comments and stuff like that. I think there is something uniquely triggering about supermarkets, which I'm curious about. I will caveat that by saying that my kids Although they don't like it, and we are completely disruptive and unruly, there's never been like a proper meltdown that you would Sort of recognizes a melting.

Helen

You're missing out, but you've overlapped him. I'll just look at your show now. It's done.

Mark

It manifests itself in sort of um defiant behavior and rudeness with Jay and you know frustration and emotional shutdown with India and Otto sort of crying and needing to get the hell out. So there is that level of everyone, but it's not like completely boiled over to that degree, I guess. Is that something that you get with Katie?

Helen

Yeah, I mean supermarkets for me just have a great big nope. Just avoid, avoid, avoid. I hate it.

Mark

What is it about supermarkets then? What is it?

Helen

I mean, partly it's like there's a massive sensory element. you're in each aisle, although it's a big shop, each aisle is is fairly enclosed. And if you're crossing people, you you're constantly coming across people walking the other way.

Mark

Yeah, yeah, yeah.

Helen

There's trolleys everywhere and there's people and there's noise and the Fridges and the freezers are noisy.

Mark

And it's strip lights, I guess, as well, because it's very harsh lighting.

Helen

Yeah, and I and the smells, when you go down a different aisle, it smells different than the previous one did.

Mark

I've 'cause I've never Thought of it like this at all? Like, obviously, you know, as a suspected neurotypical, my sensory awareness is probably quite dulled compared to a lot of neurodivergence, right? So, I've never considered that, but also, I presume, just the number of things to look at. like on every shelf, the vast amount of different it must be completely overwhelming.

Helen

We tend to try to get deliveries once a month at the beginning of the month.

Mark

Yeah, yeah, yeah, yeah.

Helen

avoid going as much as we possibly can. So I have a big freezer in my shed, like a big stand-up tall, just a freezer.

Mark

Yeah.

Helen

I fill it at the beginning of the month. you know, and and we order from Tesco, which is a bit of a pain in some ways because price wise you're a bit scuppered, it's more expensive than than the other places you go to. But it mostly ensures that we can stock up on a safe food We allow no substitutions. I've got substitutions.

Mark

Oh, you can actually, yeah, I only recognize. I realized that the other day, you could say, hell no, do not. I'd rather not get anything.

Helen

Never substitute anything because I'm not kidding. If you put baby bells in instead of cheese strings, I'll kill you because she'll get otherwise she's getting to me first. you know, we we stock up with like a jubblaze, specific pizzas, southern fried chicken, alpha ice peace, sweet con, it's all out there.

Mark

So all all the safe foods are so important.

Helen

This is something I discussed with the right ice cream.

Mark

Oh God, yeah.

Helen

And and then we usually top up at like at the small Sainsbury's near to home or the small co-op near to home, just in our village. We live in a fairly sizable village, but you know, we have the little shops here and we have a little as well. Either that or or if we don't top up at St Bridge, I just ask someone else to go, even if it's my friend.

Mark

I'm just like, Well, I just can't face it with yeah, we do similar. So we do a regular delivery because You know, you don't need that. They would like, you know, I will pay the delivery fee to not spend an hour and a half. going 'cause it's a massive shot. We're g you know, I mean, yours must be insanely big 'cause you've got a much bigger family. But mine's pretty sizeable and I don't want to be taking all of my lot, like, through the supermarket if I can help it.

Helen

And the amount of impulse buys you you end up with with Yeah. Just don't want to melt down.

Mark

Yes, yes, yes, yes, of course. It's like six in the trolley. And then you get to the checkout.

Helen

like i've got four piñatas in here what did i agree to yeah yeah yeah yeah yeah all of that and but there's people A kid does not do well with people. People she doesn't know. People are unpredictable and she needs predictability. She needs stability. She needs to feel safe. She doesn't feel safe a lot of the time. And that's part of her problem is that she feels unsafe a lot of the time, whether she's in bed at night, it stops her sleeping, if she's out shopping There are people they're unpredictable. She doesn't know if they're going to speak to her, are they going to touch her? They might brush past her, they might look at her, they might smile at her. They might speak to her or heaven forbid they might ask her a question. 'Cause people like children, don't they?

Mark

They don't I mean, they just don't they just don't like our children.

Helen

And my other kids, you know, they'd have been sorry they asked me other kids a question 'cause they'd be following her down the aisles answering it forevermore. And I'd get my shopping done in peace, do you know? Whereas with this one, oh, heavens alive, no. Just no. Especially when she's unconventionally dressed Shall we say?

Mark

Okay, so are you talking about like Wansie or Udie or Odie?

Helen

Maybe, maybe she's wearing a summer dress in November with no coat.

Mark

Yeah, maybe she's wearing a winter coat in September.

Helen

Maybe she's got no footwear on at all. But, you know, people comment and they'll say, oh, is she not a bit cold? Or, you know, it might be that she's got the summer dress on in November. and then she's got my cloak wrapped round her, which is like dragging on the floor and and then they're commenting about that and what character they think she looks like. And she's not interested. She doesn't want you to speak to her. Leave her alone. But now I've I've got a shop with this child who's done and panicking, you should said, Ah, that's a really cute top you've got on.

Mark

I know, and like just to be clear, people are not meaning it yeah they they're being nice and they're being polite and it's meant with good intentions, but you can't predict that and you can't control that. So then it sets off this sort of you know dysregulation.

Helen

And then you spend the next two minutes where you should be trying to pick a bag of carrots and get all your veg in the trolley and get your potatoes and blah blah blah and be done in the veg section. But no, she's too busy asking, Why did that lady speak to you, mummy? Why did she feel that she needed to comment on my top? Why did she like the bunny on my top, mummy?

Mark

Just on and on and on just like For pity's sake, like I'm can I go home. And this is just the top-up shop, right?

Helen

Can you imagine if this is the big shop? Yeah, can you imagine? And I deliberately go to Liddle very occasionally, Aldi, mostly try and go Well, no, I can't try and go without her 'cause she won't stay at home without me. It's a nightmare. It's absolute nightmare to dug up. But if I do end up in in like Liddle, it's such a small shop Right. There are less aisles. We have got less gauntlets to run. It's just not going to take us as longer. We've less chance of getting stuck. Because this is the other thing with Katie. When she hits Overwhelmed, feels like she can't take any more, she becomes stuck. So, like, fight-flight-freeze mode, she'll just freeze.

Mark

Okay, yeah, on the spot.

Helen

Maybe she'll shout and scream, maybe she won't. Maybe she'll become non-verbal. Maybe she won't. Maybe she'll sit down on the floor for 20 minutes. Maybe she won't.

Mark

So we don't really know what you're getting every time.

Helen

No. You know, and and that can be we can be stuck anywhere. We could be stuck in the car outside the shop waiting to go in. We could be stuck in the foyer, in the shop itself. She could be stuck somewhere really random or in the car park or sat in the car unable to put a seat belt on afterwards because You know, there have been too many demands, we've had one too many, and now we can't negotiate anything.

Mark

And it's again, it's this unpredictability because you're out in you because there are so many potential variables that are gonna set off this overwhelm. And it's similar to ours because, you know, some you sometimes you might go on a day and you don't really think about it and it's like, oh, shit, it's like a really nice weekend and everyone wants to get a barbecue this weekend. Until it's absolutely rammed and you're like, Well, I'm committed now. We're here. You know, we've got us all out of the house. I'm just going to have to strap in and do this. Then You end up, or I end up just having to improvise games about, oh, let's guess how much this shop's gonna be worth. And like, that buys me about a minute. or trying to just make shit up on the spot to try and keep them entertained so that they're not thinking about the fact they're queuing. I think queuing's quite a big thing. Is that the same with Katie?

Helen

It's not the worst part of shopping, I have to say. By the time I get to the queue, she's trying to work out at what point we get things out, or she's saying Can I go and look at the magazines there? And I'm like, oh crap, magazines are six quid each. Do we have to?

Mark

You can look at it, just don't we're not buying it.

Helen

So like you know, it's like a library.

Mark

You crack on, love.

Helen

Yeah, but she gets emotionally attached to random items and then she'll hit that freeze response because she doesn't know why she has to have it, but she has to have it. We had an incident once with that in Morrison's. She wanted this cup with Elsa, you know, from Frozen. Elsa was on this cup with a straw inside it, and she loved this cup and she wanted it. And I said, No, you know You've got enough cups at home, forgetting I was dealing with a PDA, forgetting this wasn't your everyday kind of run-of-the-mill child. No, no, this is Katie. And she had this massive Massive meltdown. Lasted forty-five minutes.

Mark

Oh, wowzers.

Helen

Why the hell was I still insisting she couldn't have this bottle? Like, it's just meat spotted. You know what you need to do?

Mark

You need to let it go.

Helen

Well, she couldn't hold it back anymore.

Mark

Maybe that's playing into your PDA as well, though, right?

Helen

Do you not think that there's like two PDAs locking horns and going, Well, I've got a bit more willpower than you and the until my husband who doesn't have PDA and and just wants to get out the heck out of there is like How much was that cop, Helen? Three quid. Three quid. We have enjoyed this for three quid I am going back in that shop, because by now we've managed somehow to negotiate the shop with her, wailing the whole way around. I think we just went to the Tills and Paid, came out and she still sat outside. We've been outside the shop like thirty minutes by now. So fifteen minutes screaming inside, thirty minutes screaming outside, no sign of this going away. She's stuck. She can't move if we try and try and pick her up. She kicks Hits and bites because she's in fight mode as well, so she'll freeze. But then, if you come near her, she'll fight, and then you run the risk of her getting up and running. Although, she won't leave me, she might just try and run and forget herself, but run out into the car park. So for this reason we know I've a blue badge as well to keep her safe. But yeah, he he was just like I'm going buying the bloody cop. But this is safe. What is this? I could have saved myself forty five minutes and a load of trauma.

Mark

I know, but this is one of those ones where you where you're sort of like, maybe it's a learning. Maybe we need to set some boundaries and then it's like, oh, dude I'm like, you know, when you do that sometimes, I do that in the house sometimes, and you set a boundary, you go, I fucking wish I hadn't done that because I know.

Helen

Sometimes I just back down and go, do you know what? I don't care about it enough for me. I don't actually care enough. It's okay, we can do it this way, but but no, that day it took Matt to step in, and I know that when she's in that state, like she's triggered a brain think she's about to be eaten by a bear, yeah, because with PDA, you know. with the anxiety there, the brain kind of I don't know if you find this with Jay, but her brain definitely will not tell her the difference and cannot tell her the difference between me saying no to a cup And her getting pushed off a cliff.

Mark

Yeah, it's a nervous system response. It's your nervous system's triggered. It's like a. I think of it like a puffer fish, basically. They're off, and then, like, there's no, you know.

Helen

So there's no. talking her down. There's no reasonable discussion. There's no just letting this play out and it'll run out of steam It won't. It does. It never has. Why outside Morrison's did I think it won't?

Mark

Because you were triggered as well, Helen.

Helen

Oh, but honestly. Yeah, we do these things, don't we? And And yeah, these are the kind of things that make me think we should never go shopping. Never. 'Cause it starts with leaving the house, doesn't it? There's a lot of demands. Well, that's the thing.

Mark

If you think about it, right, every time if you think about every time, you know, we we talked about earlier about the noise and the lights and the number of people and the s small aisles and the you know, all of that like jostling and being spoken to. So before they even go, they're already a bit on edge, right? So before you even get in there. there's a level that you know that they're already their glass is already pretty full. So then when you start to encounter these other things like you know, people talking to you, or like there being more people than you expected.

Helen

Or the things you wanted not being on the shelf. The things you wanted not being on the shelf.

Mark

Or the worst one. I go every Saturday. I have the kids, and it's the little top up shop. Uh I make it as fun as possible, and it's we do it regularly now. It's it's fine if everything is expected. But if there's a curveball, it becomes a much bigger problem. And the one I had recently, which I had not thought about was sometimes a supermarket that you've been going to for years just decides, you know what, fuck it, we'll rearrange everything We're going to move everything about.

Helen

That's something I wanted to say to you, because our local Sainsbury's, where I do my top up shop, moved everything and it took them about three weeks And I went in and I was like, oh no, I need to speak to the manager after like two and a half weeks. I went and spoke to the manager and I just said what?

Mark

Put everything back. Can you go back to like three weeks ago?

Helen

Are you nearly done? He was like, Yeah, I've just got the free fridges to do.

Mark

Oh, see, this was an ongoing refurbishment.

Helen

Oh, okay. I've just got the fridges to do and it'll be finished by the end of this week. This is my final run on it. I was like, oh, thank you so much for letting me know. I said, I've got autistic children and I've got a little girl who cannot handle change. So I don't want to bring her in a bit at a time and then there's a different change the next time, another one the next time. I need to wait until you've finished. and bring her for the whole lot. But now, after the refurb, they don't even stock half of the same things.

Mark

Oh man 'Cause ours was was just like this. They did it just overnight, seemingly. as well without warning. So we have a thing where you know we have you have a routine in the supermarket. I think routine is important for our kids. We know what, you know, because then you know where you are in the process. So we start off getting the bread, right? And India will like make a beeline for the bread, you know. And me and Otto are a little bit slower. And we catch up with her, and she's just frozen in the middle of this section. Just like a look of panic on her face, and I realized that they'd completely redone the bread section. But the thing is, like the bread that we normally get was only about three meters away. They hadn't like Moved it to the other side of the store. It was still the bread section. The bread section was broken. The shop was broken. The treat was broken. And also, because you gamify, or because I gamify the The game that we play is that she's got to get the tongues and get the bread out of the little, you know, it's the little individual ones. And that wasn't available. So it. She she was just really frustrated and again she does she goes situationally mute at that point and is is just consumed with Frustration and it was had to really kind of talk her down from that one. It's like it's just behind you, look, it's only over there, and look, we can still do the game. But it was, yeah, it really threw her. It's those curveballs that you don't expect, isn't it?

Helen

It absolutely is. And I just think for me, shopping, it's like a trolley dash, but one where you can't remember what you need. If you've made a list, you can't get opportunity to read it, while a small person darts unpredictably around the shop, right, bumping into people, risking knocking displays over while becoming attached emotionally to random items that we can't possibly leave the shop without.

Mark

You know what I'd like to see? You remember Su you remember Supermarket Sweep? They are windows.

Helen

Yeah, yeah.

Mark

I'd love to see a version of that where they have neurodivergent kids with them. You've got to go as quick as you can. You've basically got you get got to get your PDA on board to get all the way around before two minutes is up.

Helen

Right, but we've got to have those centre aisles that Aldi and Liddle have. Oh, so distracting or whatever it is, best buys or whatever it is, Aldi. Because we always come home with like eight plant pots, a book about sheep, and a packet of weird spices we'll never use, but you know, she needs it because it's got a cute duck on the packaging. It's not worth the half hour negotiation over the eighty nine P it was for that. Do you know what I mean?

Mark

No, it's not.

Helen

So Dale could have some really, really interesting stuff.

Mark

You've got to work out what strategies are going to help to get you through this. And I've got a few that I use. One is to get them involved, so you're not just dragging them along. So they insist on taking in turns doing the trolley. Now. It they are not safe with the trolley. But do you know what? I just let them do it. I am you know, I sort of make sure I clear the way and I'm deeply apologetic to anyone that they inconvenience, but uh it it definitely helps because they do take it very seriously. It is, you know, like Otto is so Anxiety-led that it's like he's pushing around uranium or something. The way like how slowly he progresses through the art and how carefully he does it. So it is, it's like he's pushing an explosive device around and he's trying.

Helen

That that makes your shot take three times as long. And then if you give it to Jay, it's like he's playing skittles with other people with his follow. Yeah, yeah, yeah. It's a fine line.

Mark

But we have to do it fairly. So each time I have to remember who did the last one, so that it's this time, right? So they do it. And I also give someone th the list to read through, which helps. Again, they can read the shopping list out. But also the thing that I that is a was a game changer for us, and I think Tam found this out early earlier than me, was Give them things to find. So, again, like supermarket sweep, just go, oh, we need some breadsticks. Go find some breadsticks. And then They just you let them loose fuck off. They are just like they you are flying by the seat of your pants. Like, seriously, I'm I'm aware of this and I'm aware to everyone else I look like a very shit parent because my kids are just like then they're off they're running off but it's fun right and you get two minutes peace well for them they love it For me, who knows what's going to come back? That could be anything.

Helen

But also, in that 30 seconds, they've gone to look for something. You can get the next six items off the wall. Well, yeah, yeah, and that's the thing.

Mark

And if I've got Otto on trolley duty, because he's not, he wouldn't Dash off without me, he'd need to be with me. Whereas India and Jay both suspected PDA, so I think there's a thing there, it's about that independence, isn't it? It's about being a grown-up as well, yeah.

Helen

So they will then.

Mark

They will then just like dart off and go find something. Jay will always, for whatever reason, because he never looks at the price of things. He will always instinctively choose the most expensive one. Yeah, exactly. I mean, it's good. He's got good taste, I guess. India, the frustrating thing with India is that. She insists on me not helping, right? Which is fine, but if I see that she's running off in the opposite direction to the thing that she needs I've tried before going, oh, it's that way, and then she gets absolutely furious because I'm helping. And she wanted to do this on her own. And like, we might have been right next to it. Do you know what I mean? It's like go and get some yogurts, and we're literally by the yogurts. You can't point it out. So I'm sort of, you know, and Otto's there going, but it's just there, Daddy. It's like, yeah, I know. You can't do anything. And Yeah, I've had this before where she's been running around for ages trying to find something and something that you're hoping is going to be quick then turns into this massive mission and you just sort of like You know, just try to gesture with your head that maybe it's over here and like hope that she doesn't realize that I'm subliminally trying to suggest where she looks.

Helen

It's still my biggest mistake. Lidl, that is all little's fault. Lidl have these little tiny children's trolleys. Oh, yeah, okay. And once Once I said, Oh, go on then. We don't need a big trolley anyway, we're only here for two things. Let's put them in your trolley and we can manage it together.

Mark

Okay.

Helen

Am I totally stupid? Well, I mean, yes, we can never go in Lidl now without one of those small trucks. Complete liability Obviously, she's just a liability. She's everywhere. Everyone in the shop knows where I am because all you can hear is there's a man behind you. Oh, I'm just concerned that that shelf's quite close to you. I can't see you to keep you safe when you go around the corner without me. Jeez, is it just behind you?

Mark

Yeah, there's a lack of awareness of the general public. I think India has this as well: is that she'll like, you know, she'll park the trolley across the aisle so no one could get through. But again, Suggesting that she might want to move it out of the way so people can get through, then triggers her, I can do this on my own. Yeah, yeah.

Helen

And then By this time, I've no idea what I'm buying by now. I'm just rubbing things in the trolley as I go, hoping we can make some meals out of it, going, Oh, we always buy that, we need that, we need that When you get home, you know, there's already eight tins of of chopped tomatoes in the cupboard, but I bought another twelve.

Mark

I just aren't we teaching them life skills. Aren't we some at some d level teaching them life skills?

Helen

I don't think that mine is learning life skills. I think mine's just like running right in the shop. I think what she's teaching us is that she needs to be taught how to do online shopping. Or really? That that's it, really? Or she needs to find herself a group of friends that take pity on her and go, Hey, Katie, do my shopping tomorrow. Do you need her? Yes, you do. You need bread, you need milk, you need cheese, you need eggs.

Mark

Yeah. So just just navigating your way around the supermarket is stressful because of the other people and the fact that they like Otto Picks everything up. Literally, I'll be going, don't touch anything with your hands. Point to stuff, don't pick anything up. And he literally, I say that, and it's straight away, he just picks something up. He can't help it. He's so, his ADHD is so strong, he's so impulsive. That if you see something he's interested in, he picks it up straight away and it's dead. It's like, and to a degree, that's on me. I shouldn't be Saying that, you know, what's wrong with him picking up something? You know, I'm a bit nervous when it's like a big glass jar of olives or whatever.

Helen

I was about to set your 900-gram jar of olives in the top shelf for whatever reason.

Mark

Olives strike me with fear. Read what's on the back of that jar. Give it to me now. I will just look. But but broadly, I think I should yeah, it should be okay. But um And I think, really, from my perspective, we are very performative shoppers. We are very loud. But I make a bit of a joke out of it. It's not do you know what I mean? Like, I can keep it humorous. to a degree because it makes it more fun for them. And I part of me is just like trying to make it less annoying for other people by at least it's like it's like dinner theater, isn't it? It's like shopping. There's the thing. I start charging them afterwards. It'll pay for Jay's overly expensive pain au chocolat. But once you've got everything, right? Then, then, oh God.

Helen

It's not done, is it? Then it's the checkout.

Mark

You've got to get to the checkout. You've got to navigate that. And then you've got a choice to make, right? Do you do self checkout? Or do you go it depends I think it depends on how much you've got, right? Do you go self-checkout or do you go actual human person checkout?

Helen

If you've bought meds or alcohol, never, ever, ever go to the self-checkout. Because then it red lights you, and then you've got to wait for a person to come and speak to you.

Mark

Yeah, I know. I do this, but to be honest, I sort of catch their eye really early on. If I'm when I'm in the queue, I'm like, all right, where are they? You know, like you just got like a hyper-aware of where they are at the time. And then before you go over, you sort of wave your bottle of wine or whatever.

Helen

She's so used to there being a conveyor belt that like in I mean in our Liddle they don't have self checkouts anyway. They do in Sainsbury's 'cause it's such a small Sainsbury's local, but it's a lovely little shop. Uh but it's always the same people serving 'cause it's village shop, which is really nice.

Mark

So they know you thou now then?

Helen

Mm yeah, I kind of.

Mark

Yeah, and actually in a good way? And do they go do they like when you start approaching, they put the check out clothes sign up, go sorry, I'm just about to finish. So you will always choose actual human person.

Helen

because it's a conveyor belt that Katie likes to help unload and at self checkout, that's much harder.

Mark

Yes.

Helen

Easy container with a whole load.

Mark

See but then you've got a way up the benefit of giving them a thing to do and putting it on the conveyor belt and the fun of the conveyor belt, that side of things, against the disadvantage of having t to speak to an actual human person who she doesn't have to speak to then no, but always with my kids, because they're very they're quite eccentric, my kids, and they're but they're quite fun. People like to talk to them for some reason. They always want to have a little chat with them. And then, like, Otto just like eyes down, shrugs, and just is not on board. And India, very similarly, will not. So they're not they don't react in the way that they would expect chi other children to react. So sometimes it's not really worth it for me.

Helen

Katie mostly blanks them if if if the people at the checkout try to speak to her. mostly she'll blank them, and then I immediately have this phrase that I'll say, Ah, yeah, sometimes we have words and sometimes we don't, and either way is okay.

Mark

Yeah, good. That's nice. That's a nice way of putting it. Do you say that to you're you're take talking to the other people?

Helen

You're like training them.

Mark

Yeah, good, that's nice.

Helen

And I'll look at Katie and give her a smile, and she'll just run off and start climbing on the nearest thing.

Mark

No, I always go for the checkout because they lie again, part of this giving them a job to do. Giving him a little bit of autonomy.

Helen

Oh, you don't let them scan it as well.

Mark

Yeah, I do. And then that is where awfulness. Yeah, it it is, but again, what what I'm saying is this is the top-up shop. So we're not talking we're not talking a massive amount of Items in this, and it's India more than Otto or Jay that wants to do it. Like, India's the one that insists.

Helen

Um, yeah, Katie does it in Sainsbury's

Mark

Otto generally wants to get out. As soon as humanly possible. Like, he doesn't like it. So, you know, it is frustrating because you know, you have to balance their needs. So as soon as we walk in and Otto's overwhelmed, he wants to leave straight away. If I've given Inda an item to get and she can't find it And she's running off. I can't help her because she'll get frustrated if I help her. And I also can't leave straight away, which is what Otto wants and Jay wants. Like, so I d I can't win. I'm in a no-win situation. And it's all because I didn't get enough flour for the weekend. You went shopping.

Helen

What were you doing?

Mark

What was I thinking?

Helen

As soon as you said you go shopping every Saturday when it's your weekend, I was like What the hell do you do that for?

Mark

I don't know.

Helen

And you're tired by the time you go up. You need a nap.

Mark

Yeah, I know, I know. But it's uh We've got to this happy chaos stage, and that's fine. I think. I'm going alright with that.

Helen

Yeah, if it works, then Used to work. It used to work with my first three.

Mark

Yeah, okay. But also, you know, Katie's a bit younger and She may well evolve into someone who is more able to do that kind of thing. I've seen Jay evolve a lot lately, actually.

Helen

They sound like Pokemon.

Mark

Uh yeah, and that's why I use the word evolve because it is like he's obsessed with Pokémon and it helps me. I've actually used that terminology with him recently and it it kind of helps.

Helen

Yeah, well, I try not to look too much to the future because it could be too upsetting. it could go either way, and I don't want to assume which way it's going to go. And I don't want to think too hard about that. I just I deal with the here and now at the minute. As she starts doing better, it gives me hope for the future, and then I'll look forward because I've got things to give me hope to look forward to.

Mark

Yeah, yeah, yeah, yeah. I think, I think that's it. Day by day. Just take it day by day, Helen.

Helen

Yeah, yeah.

Mark

So obviously, you've done your checkout and then you're in the clear, right? Just get in the car and go home, right?

Helen

You'd hope so, wouldn't you? You think, well, then You've got doors to manage, which we've had to do on the way in as well. But we've got doors to manage. It's easier going out than it was coming in. However, she has to open doors herself. But it's Superman. Any doors. Any doors. She can't walk through a door if someone else has opened it for her.

Mark

That that's the idea.

Helen

So because it's all automatic doors at the supermarkets and it's triggered as when someone walks towards it If she's not the one who's walked towards it and triggered it, she cannot go through it. So she will stand back and wait until the doors close fully. Give me a second and then step forward. Quite often she's not quick enough. So someone else, this is a busy shop. This is little in the village. You know, people are walking through. They're either walking in or they're walking out.

Mark

Is she kind of patiently waiting or is she getting gradually more of a business?

Helen

Non-verbal with a face like that.

Mark

She's rage waiting.

Helen

She's rage waiting, but it's all building up inside. And she's trying to keep a lid on it, bless her, because we've talked about this a lot, how it works. And I've said, I'm patient, I can wait for you. It's not about, I'll wait as long as it takes. But then, once you've got through the first set of doors, do you know how many shops have an initial foyer where you go through the first? Set of double doors.

Mark

Yeah.

Helen

Right? And then you're in the foyer, and then you have to go through another set to get into the shop.

Mark

And does she have to get both in one movement or does she once you pass once you pass the first set That's in the bag and then you have to wait for the second set.

Helen

Yeah. Yeah, that's in the bag once you're in.

Mark

Okay, well, at least there's that.

Helen

But once you're in, where to keep the little trolleys? So we've got to get the little trolley then. So then we can go and trigger the next door. But I've known it take us twenty minutes to get into a supermarket.

Mark

And then you're getting pissed off when people's like, can we not just people, can we not just wait? Let the child through.

Helen

But if they've got automatic doors, right? If you see a kid behind you, walking in front of their mum, going to come into a shop And you've got a manual door and you've gone through it, what do you automatically do?

Mark

You hold it open, right? Yeah, because you know, to not do that would be incredibly rude for a neurotypical.

Helen

Yeah, and she steps back and she steps into the trolley I'm pushing and she knocks things flying and the people behind me have to do like a brake check and the emergency stop behind me, and the whole thing piles up and then the doors behind me close on someone, but no, we've got to back up, and then I have to say to the person, Thank you, but She's basely independent and likes to open the doors for herself.

Mark

I love it. So and they're usually fine with that, I'm guessing.

Helen

Yeah, yeah. People generally laugh and go on. Because it's funny, right?

Mark

Because you're making a joke out of it and you'll but but even so, it's just like, it's not a joke. Yeah.

Helen

Even if it's hard. And then, of course, you've got to take the trolley back once you've put everything in the in the car, haven't you? So you start the door, you get to the car. She's climbed in by now while I've put stuff in the boot, but she's already transitioned into the car. She doesn't want to get out to come and take the trolley back with me.

Mark

Yeah, yeah.

Helen

But I'm not allowed to walk away.

Mark

But for her from her perspective, you know, she's done, right? She's completed a very difficult challenge for her.

Helen

So she's still. Yeah, and she's still got to face the trauma of sitting down on the seat, Steven sat down on a bum and putting the seat belt on and keeping it on till we get home. And if I've forgotten to take the tablet, woe betide us that she can't watch that to regulate on the way home

Mark

And this is uh this is why we do not go away.

Helen

We shopping is not the one, yeah, it's not the one, yeah, it's not my favourite thing.

Mark

So, obviously, just your normal everyday food shop, right? The other challenge that we have with NeuroDivergent Kids, and again, it's one that you sort of have to do in person, I think, given the nature of our kids' needs, certainly my lot. Clothes shopping, which is, oh my god. I'll start by saying that Otto will wear anything, whatever we choose for him. He doesn't give a who. He'll wear it. That's fine. Not a problem. And I think that is true of most neurotypical kids. You know, like I was like that when I was a kid. You know, my parents at that age, seven, eight, nine, just went, you know, got some clothes here, fine. But yeah. I'll put them on. Not probably. I don't have any sensory issues around that. Otto doesn't really have any sensory issues in terms of how clothing feels. How tight it is, how loose it is, because you know, I think just because of his profile, right? It's not a thing. However, with Jay and India It's a huge thing. Like the way that clothes feel, not how they look, how they feel. Doesn't feel right. Is really important. So that means. You ha you can't do that online. I've tried it before. I've ordered stuff online and it's turned up and Jay has just taken one look at it. He's not even touched it. He's just looked at it and gone, No That's it, no, too scratchy. How do you know you haven't touched it? No, okay. He's flat out rejected without even trying it on. And we've done this has happened countless times. So obviously with shopping shopping online, things look fine on the screen on Amazon, right? They look fine. But it is it's a lottery. You don't know what you're getting off or back about. And then when it comes through, and then they reject it for like just the tiniest of reasons. And you end up having to send stuff back. And when you return something on Amazon, you have to give a reason, right? It says why are you returning this? Like it's one of those reasons are like nah it gives my kid the ick. I don't know. Like There's a lot of different reasons, but none of them are like I have a neurodivergent child and there is something unforeseeably disagreeable about it. That's all I've got. Um, so yeah, you have to just put not as described or not as described yet. Not as described. Just take it. Just take it back. And you know, Paul, I feel p sorry for the poor seller who gets it back, it's not as described. I mean, it's literally exactly as described. It's a fucking t-shirt with a picture of a frog on it.

Helen

Peter's got a little PDA friend that is, you know, she's lovely, we get on great with her. But when we went round there last, her mum had bought her this this doll for I don't know, Christmas I think it was, but shown her beforehand, as you do, 'cause no surprises. But but this doll was just wrong. Yeah. It was the one she'd wanted. It was exactly right in its box. But when it came, its face was wrong. So the dog wants to go back.

Mark

So out went the dog. Its face was wrong, dude. It's so harsh.

Helen

That's so harsh.

Mark

You can't, what can you do? It's like it's everything's like yes or no, isn't it? It's not like, oh, you know, I'll live with it.

Helen

That's never

Mark

Footwear is the other one as well. I know what size is, but some shoes, that size varies in tiny amount. So you have to try and get them to try the shoes on because if you order them online and they come and they're a tiny bit tight Either you've got to go through the massive faff of returning them, which is a huge ballache of like, you know, having to arrange for the return label and then find time to go to the post office at this. So What's the worst option? Is it going through all of that rigmarole of finding the shoes, getting them delivered, going through the process of them not fitting, then doing the return? Or is it just encouraging them to try and go to a shoe shop for like an hour?

Helen

Online.

Mark

Yeah, do you do it online?

Helen

Yeah, so sometimes what I do is I go to TK Maxx and I have a look at what randomness is.

Mark

Is this just you or with Katie? Or just me because I'm out by myself, you know.

Helen

Squeeze five minutes into TK Maxx. This is it, though, right? This is a treat. This is your treat. This is my treat. Time to myself. Go meet. Look, I'm in TK Maxx.

Mark

You're not going to have a spa weekend. I just get to walk through TK Maxx on my own. Living the dream, Helen.

Helen

I really I tell you, I am. My life is just it's the one. So I'll go to TK Maxx. I might get a couple of pairs for us to try on and then bring them home. If they've not got anything, then I'll start hunting a bit deeper. But yes, there we go. We'll get some shoes into the house one way or another and I'll get her to try look at them And she's like, Nope, don't like them. No, don't like them. Oh, those are so pretty. I'm like, Oh, hell, please fit her.

Mark

Oh, yeah.

Helen

And it just I want those ones before she's tried them on. So I've ordered them in two sizes to hedge my bet.

Mark

Yeah.

Helen

'Cause if I'm gonna take stuff back, then I might as well take even more back.

Mark

Yeah, exactly.

Helen

So I'll do that.

Mark

It's like Cinderella, isn't it? Then, at that point where you're sort of crouching down going, Please, please, please.

Helen

Please fit, please fit. The last time I went to TK Maxx I bought I actually got two pairs of trainers and one fitted her perfectly. The smaller pair fitted perfectly. And she got really upset at the thought of me taking the second pair back to the shop. So I said, you know what? Sod it. We'll keep 'em.

Mark

You'll grow into them. Oh, yeah, yeah, yeah, yeah. She's growing into them. Yeah, nice, nice work. This is what we do, particularly with Otto, because Otto goes through shoes like Nobody's business because he's so like heavy-footed and kind of clumsy, and he plays football. So he just like It's like probably a pair of shoes every month or two months. It's insane because also he likes to have shoes that aren't. Too restrictive, right? So, Skechers are the shoes that we use, they're amazing, weirdly neurodivergent friendly. I've said it before in this podcast, and I'll say it again. I don't know why they just didn't nice shoes for Neurodivergents to wear. But he goes through them so much that Tam just had this great idea of just fucking buying loads of pairs of them. And just like bulk buying. So you open up a wardrobe in our house, and it's like a stockroom of a shoe shop. Like, and all this, like. like going up by one size, half a size, just because we know he's going to get through them so quickly. So we can we can buy online with Otto. we cannot buy online with India or Jay. So you have to then face the process of taking them in. And that is getting them engaged in that is a Flipping nightmare because if there's anything out of place, if it's the texture or the seams are too prominent or it's too small or if it's too big or if it's more blue than they were expecting. Just like anything. Um, no, but they will assess them Scrutinize them like to an intense degree. So India, dressing her in cold weather is an absolute nightmare because she doesn't like the feel of stuff. And I look like a terrible parent because she's walking around in a T shirt in like sub zero temperatures. So I tried to address this. She won't wear a coat. That's a huge Huge issue. It's been a perennial nightmare for India where it's the tightness of the coats and the thickness sometimes and the cuffs and like just too many variables that I wouldn't even understand, right? I have tried it. where I tried to trick India into thinking about coats. And she knew what I was up to pretty quickly. I went to a supermarket, right? But not our normal supermarket, but a bigger supermarket that has a clothing section. And then I pretended that, oh, I appear to be near the clothes. Oh, look, there are some coats over there. You know, just an observation. You know, I'm using a declarative language. Oh, would you look at that? There are some coats in your size. I'm just going to look over here. And, you know, I was hoping that India might at least have a think about it. She literally ran in the opposite direction. Like, she knew, I'm onto you, idiot. I'm off. And then she legs it in the opposite direction. It's like, I tried. I tried.

Helen

Yeah.

Mark

It's very difficult clothing our children, but it's an essential, right?

Helen

It is an essential. Now, well, Katie needs a summer wardrobe. So I've ordered some stuff for her. But I've ordered I've ended up ordering from like four different plumbing shops. So we refused to pay delivery for all four shops. I mean like another twenty quid on delivery. That's just stupid.

Mark

Yes, yeah, yeah.

Helen

No problem. There's local branches of all these shops in our nearest town, so I'll order them in. Great. Now I've got to collect some answer.

Mark

And have you got to take Katie with you?

Helen

Oh, yeah So which I tried today to say one of them a couple of them had come in, but she'd gone out this morning with her adult siblings, her eighteen and twenty year old siblings. So they'd gone out on a two to one ratio. And I said to them, while you're there, would you just call into M and S? and pick up the parcel there. So they did that and it was fine. They took her over to Alster. She managed okay. And then I got a message, We're waiting for a bus She's not doing great. We're just going to get the next available bus as close to home as we can. Can you pick us up?

Mark

Oh, God.

Helen

I mean, before they went, it's a big preparation, isn't it? We she had ooh, her favourite stuffed monkey, her jacket, which she's named Fluffy. Because it is fluffy and saved snacks. I sent twenty quid to a brother just in case the emergency, like buy anything, anything that you really need. Just buy it if she's hungry, if she's thirsty, if she's cold, buy her a pair of blinking leggings from HM. I don't care. You're taking her out. Like, if you need to get an Uber home, just do it. If you need to buy a Fidget Soy, if you, whatever. Just is 20 quid.

Mark

Just, just

Helen

Do your best.

Mark

May the odds be ever in your favour.

Helen

So I was saying, you know, you can see what you expect before they even leave home, by the way, you prepare, can't you? Anyway, she she'd managed this shopping trip and she got some of the stuff, but the rest hadn't come in. They walk right next to Blinking next, didn't they? No, an hour after they come home, the stuff comes into next. Oh, can I come with you to get it, mummy? I need it to day.

Mark

So did you go in with her?

Helen

Yeah. So we went And actually we aced this, Mark Howe.

Mark

Well done. Nice, I love it when that happens.

Helen

Straight into next and got the stuff. Well She and my husband went into next and got the stuff because you know, I bumps into a very old friend that I've not seen for ages outside the shops. She stops to chat. and she actually withstood Matt taking her in the shop.

Mark

Nice.

Helen

So she she did that and then she came out and we went back to the car and we came home. And that is the smoothest shopping trip I have ever had with her.

Mark

Yes, sir.

Helen

I was allowed to talk to my friend and everything.

Mark

Maybe she's evolving.

Helen

Maybe she's evolving. Wow.

Mark

Amazing.

Helen

Unlike unlike the time. that we went to the Trafford Centre. And I think I feel I think I alluded to that before maybe, but I do feel the need to elaborate because it's quite it's quite a

Mark

You need to get it off your chest.

Helen

I need to tell you. I need to tell you because this is about shopping and this is why you don't take your PDA, sensory, neurodivergent kids

Mark

Off to a great big shopping centre right. Bite this idiot, learn from my mistake. That is my worst nightmare.

Helen

Mine too, now it turns out. So we'd been the week before, flushed with success. She loved it. She loved the fountains. We didn't really do any shopping. We just went back to the car after we'd seen the nice stuff. Happy days So flush with success, the sister says right I'd like to take her to do something from lush for a birthday. Fine, so we go. And honestly, it was the biggest mistake of my life. We walked with full lengths of the traffic centre from one side all the way to the other. and it was fine, absolutely fine. I thought we were doing okay. We went into Loche, she loves it 'cause they've got, you know, they get bowls of water out and you can put like some of the bath bombs and then they face and it's a whole sense she could put her hands in it. Not normally a sensory seeker, but she is in lush. So if they did that, it was fine. And she splashed in the fountains and she was skipping along the cracks in the floor, walking into anyone that was in her way. It was all, she was happy.

Mark

I mean, this sounds ideal so far.

Helen

Yeah, then we get. There's the furthest point from the car, right at the opposite end of the traffic centre. Guess what happens? The dysregulation. Suddenly, as if from nowhere, as if by magic, dysregulation appeared. So, there, there's a Starbucks there. So I was like, right, at least my daughter with me please, would you just go and get the drinks? I'm sat on the edge of some fountain nearby, with her rolling across me, flinging herself over me, nearly chucking us both into the fountain. Honestly So anyway, she had a bit of a rest there and then we set off back thinking we were doing a bit better. She seemed okay now. Okay. But we had to go in Clark's 'cause I promised her, promised her faithfully that we'd look for sandals.

Mark

Okay.

Helen

And she had a heart set on this specific pair of sandals, but they weren't in her size, but that's the case. I could order them to come into our nearest store. But she expected to pick them up at that store on that day because they've clearly got the sandals there, because they're on show in the shop. So we have to negotiate that. And by the time we're done in the shop, honestly, she was being all feral jumping about and climbing things and jumping off them and seeking proprietors of input to try and calm herself. but it wasn't happening and she was struggling so much. So I just put the sunflower lanyard on. I said to her sister fairly loudly so that staff could hear me, right? Well literally, we are on safety now. safety of her, everything and everybody around her, that is all we concentrate on. The sister like right, okay, I get it. and we just sat. And staff kind of came to us once they realised that we were kind of like, we've been served, are they all right and they're coming over and I kind of look at them until before they got like within about six feet of me and they'd stop. I was saying they'd look, they stopped. Are you okay? I was like And kind of twiddled with the lanyard. I was like, Yeah, we we just need a little time.

Mark

Yeah, just give me some space to no problem.

Helen

And then someone, another member of staff five, ten minutes later, comes, oh, is everything okay? I was like Yeah, we're good.

Mark

We'll we'll leave when we when we can, when we're when we're ready, I don't want to be here any longer than you want us to be here. Just give me just give me a moment.

Helen

Half an hour we sat in that damn shop.

Mark

Whoa, okay.

Helen

Just with her all over the place before she finally, finally just sobbed and sobbed and sobbed into me.

Mark

Just burnt herself out.

Helen

Burnt herself out and then we were able to leave. But then obviously you've got to try and get out the whole blinking shopping centre, haven't you? Thankfully, we're parked just outside John Lewis, and John Lewis have a great big ray-band stand with a load of mirrors, don't they? So we just tried a load of different sunglasses on and made silly faces in the mirrors That went well. Gamifying stuff, isn't it?

Mark

Just gets you that extra that extra little bit, doesn't it?

Helen

Yeah, so the Rayban stand was fun and Starbucks got our drinks ordered right. So, you know, it wasn't a complete failure.

Mark

Yeah.

Helen

I won't be going again.

Mark

Sometimes, right, you do have to get some non-essential items. So it's not just supermarkets, not just clothes shops. But sometimes you have to go in for items that are not food and clothing. And this happened to me when Jay was given a book token for his birthday. You know, sometimes I like to challenge us both. So it was this idea that it was this targeted thing. We're going to go there, get a book, buy a book, come home, right? And that, in Jay's head, was what we're going to do. And he was on board with it. He liked the idea of it. However, I went off script a little bit and it was entirely on me.

Helen

Get me excited.

Mark

Right, because the thing is, right, Jay gets given a book token, and obviously the person giving that gift is thinking, this is a lovely present to give this child, right? But he opens it, I'm like, oh God. Oh, oh, this means that I now have to go into a bookshop. which are typically quiet places, I have to go into a bookshop with my neurodivergent child and do shopping. This was for Waterstones, and Waterstones is right in the middle of town, and the middle of town in Brighton is busy. And so he opens this book token and the person's obviously very happy with themselves. And it's like a poison chalice to me. It's like, oh, God. Oh, okay. We're gonna do it. And he was quite on board with it. When I said, Well, maybe we can look at, you know, like a manga book or, you know, some kind of Japanese anime book. Like, he's really into that. So He was like, Okay, we'll go for this. And obviously, we needed to get into the town center. So, I park as in the actual shopping center itself, which is like Park in Waterstone. No, yeah, literally drove it through the front door. It's like, go, go, go. No, I parked in the shopping center right next to it. But obviously, shopping centers are like so expensive. The parking costs more than the book, to be honest, but I'll pay that money just to get in and out as quickly as possible. So he got in there, and he was grumpy. But in his head, it's like, I'm doing this thing, so I'm going to do this thing and then I'm going to go. So we found the book that he wanted, but he wouldn't take any suggestions from me because, you know, he's looking around, he's trying to find a book, and it's taken him a while. And I'm sort of going, Oh, this looks like a good book, 'cause you you know, you like everything else by this author, but no, no. Or what about this? These like ticks Three of the things that you're most interested in. No, because I've suggested exactly. I should have been way better at sort of going, just sort of leaving it on it, just put it, leave it on the stairs as he's about to go up the stairs, so he notices it. You know, just put it in the way. I didn't do that. But so he's getting slightly overwhelmed by being out in public anyway. This was, this was, to be honest, when he was at the kind of peak of his burnout. I think. So he was already on like we were on borrowed time from the moment we got in the car. So he's getting really, really angry. But then he He found the book and then was like, right, let's go. And he's like, well, I got to pay for it. Otherwise, that's shoplifting. He's like, okay, pay for it and let's go. But then we walked past some other books and it was like. I knew he would be interested in these other books, and I tried to get him involved in that. And he was just like, no, he just lost it, basically. And he called me an idiot and like, just completely was just so rude to me. And I was like, yeah, fair enough. That's on me. That is on me. I shouldn't have, like, I should have read the room. I should have read the. Sometimes you have to take that hit, right? And just go, you know what? Yeah, I shouldn't have pushed it. And I really sometimes you have to acknowledge how much they're going through just to be in that space, doing that thing, even though it's for them. It's still a lot. It's a big ask. Yeah.

Helen

Sometimes you have to buy the Elsa Cup. Sometimes you have to shut up about which book.

Mark

Exactly. So I basically I yeah, I bought the book and we got out of there and he was Yeah, furious for a good few hours after that. So, did you see you got a book? We did. We got the book.

Helen

See, Katie would have been, I want this one, but I want, but I want this one, but I want this one, but I can't change it. I need them. Oh, I couldn't. give a free ring. What I would have to do in that instance with Katie, I think what what I'd do is we sometimes go to the library, like you were saying about the library, we sometimes do that and she borrows books, but then she can't take some of them back. We cannot take them back, she can't part with them. So I think the current ones we've got, we've had for just over a year. and she can't part with them for me to take them back. This is becoming a problem. So we choose the ones that she really, really, really can't part with and buy them.

Mark

Yeah.

Helen

So I think for me, it would be right, you've got a you've got a book voucher, do you know which book you really want? You really wanted this book, didn't you? This voucher could pay that book. And she's all over it 'cause she already knows she loves that book.

Mark

Yeah, I don't think Jay actually read the book in the end. I think he read one post and was like, ah, I didn't like it. It's like, for God's sake.

Helen

It's not all rubbish.

Mark

So we'll look at the positives now because, you know, it can be a challenge, but there are positives of shopping for our neurodivergent kids and with our neurodivergent kids. I had, oh, look, once. Once I had a properly successful shopping trip with India. Right. Trip where it was just me and her. So again, I think that helps. It's almost like the shopping is incidental to the one-on-one time and having fun and just sort of gamifying stuff. And we went there and she needed some new clothes. Because I don't know if yours have this, but they will like an item of clothing so much they will wear it Two years after they've grown out of it, they'll still be wearing it and it's like tight, tiny. And we always do a thing called the tummy test, right? It's like if you raise your arms above your head and I can see your belly button, it's too small for you now. So I get to do the tummy test and if I see their belly button, I give it a little prod, they laugh and I go, No, it's got to go. So India was way past the tummy test on this this particular Item of clothing. So it's like, let's go and get some more stuff. And again, it's important that it has to pass the touch test with India. And whereas most kids will look at what things look like, India's only interested in the texture. So he's walking around and just like literally touching everything and just straight away, like it's instant. She could have done that shop blindfold. It would have been as successful because it's not about what it looks like, it's about how it feels. And we found this jumper, and she loved it. And she wore that every day for probably at least a year, like winter and summer. Absolutely loved it. Couldn't get enough. And that was really fun. And That was the one success I've had. I mean, fabulous. And it still lives with me. You know, I'd like to think about it every now and again. I'll get a photo out of the jumper and have a little tear in my eye. The little magical moment we had in Matalan.

Helen

A clothing like that. So we found we've found HM really good for this and actually MS as well. They tend to stock the same Style of things every single year within an age range. So until you top that age range and flip into the next one, actually, you can buy the same style, the same fit, the same fabric. Not the same colour fabric, not the same design of fabric, but this do you know the same feel?

Mark

Yeah, yeah, no, and that's a huge thing.

Helen

Jersey fabric in this style, and the seams are in these places, which doesn't bother her. and the you know, the sleeves are like that, and it fits like this, and it goes on like that, and her arms don't get stuck while she's trying to put it on or off. We can buy as many of those as we like, and she will just get dressed.

Mark

Yeah, and that's the thing, isn't it? Like, and that's another of the positives that I was going to kind of bring out in this is once you've found a thing that works you can lock that shit down. You can lock that in for years. Like India will wear the same hoodie in the same color from H and M every single time. And the same with cycling shorts. You could just stockpile that stuff. They're not worried about how they look or whether it's in Fashion, or it's how it feels and whether it fits.

Helen

So you take past age seven, and then you've got to find your new norm, and then that becomes an issue, yes, because the jumper, the magical jumper. I tried to get and they'd like it went to a certain age range and then it was like, Oh, God, we're back again.

Mark

But then we transitioned to the hoodie and then that's it gives me many more options. So so when you actually find something that works, the fact that they're not bothered about looking like anyone else or wearing the same thing as anyone else is an absolute joy. And that's the same with food as well, right? When you find a food they like, you buy it all. You buy the supermarket out in the delivery at the beginning of the month. Exactly. This is just what you eat now, just strap in, guys. But at least, you know, I think there is a positive to that. There's that element of predictability and and being able and not having to you don't have to go through this shit show every single time you do a shop. But, you know, largely I think shopping for onioidivergent children is a massive challenge.

Helen

So try to avoid avoiding shopping is a big passion of mine.

Mark

Yeah, good luck with it. Good luck. I'm not going to eat or wear clothes ever again.

Helen

Who needs that?

Mark

Exactly.

SECTION INTRO

Neurodiversity champions.

Mark

Okay, so it's neurodiversity champions now. These are people or organizations that are doing wonderful things in the realms of neurodiversity. Do you have any neurodiversity champions you want to bring to us? Yes, I do. I have two that are loveful to us and very personal to us.

Helen

So there is Lindsay's Swim Academy, which is in Shawnee to Oldham. Perfect for anybody who's round there. Or if you have a neurodivergent child that you want taught to swim, Lindsay is your person.

Mark

Okay, great.

Helen

been teaching swimming for over twenty years, and she says she's never encountered anything like teaching Katie.

Mark

There's a PDA. There's a particular thing about a PDA in water that is terrifying.

Helen

Yeah.

Mark

I can do this. It's like, no, you lit you literally can't. And the consequences of you not being able to do it are death. So Yeah.

Helen

And group lessons cannot be a thing.

Mark

Yeah.

Helen

Cannot be a thing. It is not safe. It's not okay to even try. So she has one to one, that's Katie with Lindsay. And she gets in and honestly sometimes she gets in that water and she has this thing with water and it's like you watch Sometimes you can just watch the anxiety fall off her shoulders as she gets in.

Mark

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

Helen

I want to do an episode.

Mark

I am going to do an episode on swimming, I think, because I think it's uniquely Calming to our kids.

Helen

Yeah. Even when she's in the shower as well, don't she can get her in. And you know, I mean Lindsay, she tries really hard with Katie. She's read the info I've given her about I'll give her the PDA, um, one page leaflet about what PDA is.

Mark

Okay, nice.

Helen

Gave her some ideas of strategies, talked to her about it. Said essentially, if you are ever going to get to know Katie, you are going to get it wrong and you are going to trigger her into a big meltdown. I will not feel bad about that. That's just part of getting to know her. If you've never made a mistake, you've never tried. that's how that is. So she tries, she makes mistakes and she reevaluates what she's doing. She talks to me about stuff and she keeps trying and she keeps going. And you know, most of all, she accepts Katie and she loves her for who she is. And she finds Katie absolutely hysterical. She finds it hilarious. She sees Ken Katie's sense of humour She's never allowed to suggest anything. She is never allowed to win any races. She is never allowed to do things first. She's never allowed to choose what they do today. So Katie gets in the water and she just says, Right, what are we doing today, Katie?

Mark

Nice.

Helen

And Katie chooses, and I'm not kidding, since going there, she'd been there twelve, eighteen months, something like that. She can now swim more than ten meters. Oh, amazing. She swims underwater better than she does at the surface, and she could do the most beautiful turns underwater. But Lindsay's never taught her any of these skills. She has literally just facilitated Katie's being. In the world.

Mark

Which is perfect. And also huge testament to you for sort of saying for advocating for Katie as well and saying this is how you need to respond. So there is that two-way sort of communication. Where people don't know, they don't know what we know about our kids. So, someone who's been receptive to it and going, Okay, this is a challenge, and I accept that challenge. Let's see what happens.

Helen

So, it is I think she quite likes that difference in a week. One of the really impressive things is that she has made receiving a certificate and a badge during Badge Week feel okay to Katie.

Mark

Wow. Yeah. Who who doesn't like praise?

Helen

Yeah. So what she does is she says, Badge week's coming up, Katie. Did you want to choose a badge that you want to have for the badge week? And the other kids are having to you know, work towards their five meters or their ten meters or their whatever they're doing in in badge week to earn their badge. Katie chooses a badge for something she can already do. Okay, cool. She doesn't have to perform. So the first time, she just got a badge that said I can swim.

Mark

Okay, nice.

Helen

A certificate with a name written on it. Katie badge is over there. I've left it on the side for when you want it. No big thing of giving it to opposite. That's amazing. So someone who just gets it. Yeah, well that's wonderful.

Mark

What a great New University champion. Thanks for that.

Helen

And the other big one for us is um we're a Christian family and we go to church and I know that's a lot of people in our position have said they find church very, very difficult. Finding somewhere that can just accept their family for their neurodiversity as they are has been really hard for some people. I know some people have had to leave their churches. And we have found the most accepting, loving and caring place. It's like everything a church is supposed to be. They just accept us. They don't judge us you know, anything. It's Nelson Street Church in Rochdale. I head up the the kitchen sort of side of things there and they they let me just do that in my own way and get on with that in my own way. They know that that's a release for me. It's a space where I'm not caring for Katie. It's a space where I'm doing what I love to be doing. I'm speaking to people, I'm helping people, I'm making people bruise and chatting with them and smiling at them and making people laugh. And then Katie calls it her safe place. She says herself, I've not said this to you, but she says, church is my safe place.

Mark

Oh, that's lovely. So that's obviously just a hugely welcoming environment.

Helen

She's had some of the biggest meltdowns she's ever had in that building. You know, hot chocolates have flown across the room, furniture's flown, and they look stuff look around, they see it's her and they turn away and just mind their own business. The only thing they ever say to me is across the room, Do you need more coffee? Yes, but give it five minutes, which means don't approach right now, danger, danger. Yeah, yeah, yeah. Um but then when they do approach with a coffee, they'll take the long route so as not to go round Katie, so as not to panic her.

Mark

Yeah, which is lovely 'cause again, you know, I'm guessing that they're m more much more familiar with neurotypicals?

Helen

Yeah, we've got a we've got quite a chunk of neurodiverse kids.

Mark

Well, obviously, you know, now you've advertised it, you're going to have more.

Helen

Bring it on, bring your people, they know all about it. There's someone there who one of the one of the grandparents there, and she's a lovely friend of ours, and she we didn't know before we went to this church. and she has been on the PDA Summit two years in a run to just try and learn more about what she can do to help and how she can understand those.

Mark

Yeah, which is wonderful. Like, both of the neurodiversity champions that you've mentioned today are just, you know, people who are educating themselves about what they can do to accommodate our neurodifferent people. Wonderful.

SECTION INTRO

Tiny Epic Wins.

Mark

Okay, it's the tiny epic wins now. These are the moments that for parents of neurotypical families, it would be no real Big deal. But for us, they are tiny epic wins. Have you got any tiny epic wins for us, Helen?

Helen

I've got a shopping tiny epic win.

Mark

Oh, nice, nice. I've I've got one as well. A good, I love you keeping it topical. That's great.

Helen

So very recently, obviously the nicer weather's come in, Katie needed new sandals. She tried wearing last year's and they bothered her feet and caused her a blister. So she agreed to go shopping. So we went shopping for these sandals and we went in this one shop. She saw a pair that she loved. She chose them. She tried them on. They fitted. Yes. I asked her about the other pair that she'd looked at that she was interested in. She tried them on and said they don't feel as nice as the others. We bought that pair and we walked out of that shop.

Mark

Shitting hell. That's a huge win. That is exactly what Tiny Epic Wins is about, right? That is an experience. that parents of neurotypical kids just have that that is their experience, right? But for you and knowing everything that you've been through, particularly your previous sentimental shopping experience Which has traumatised me just from hearing it. Right. The fact that, yeah, she just walked in, went, Yep, those tried them on, went, Yep, done.

Helen

She wears them every day. She actually wears shoes at the moment because she's got these sandals.

Mark

Amazing. Stunning stuff.

Helen

Yeah, that is incredible.

Mark

I'll celebrate that. I've got a similar one where I've finally got Jay in trainers. Right. He's never been one for trainers. Again, he's always he's had an issue with I find that ev the more dysregulated he is the more difficult it is to find footwear that works for him. I've noticed this, and I noticed this when he used to go to school and getting shoes on in the morning was a massive deal. And I think that now he's emerging from burnout and he's becoming a little bit more comfortable about going into school, he's a little bit more open to wearing something. a little less uh a bit less eccentric, let's put it that way. Um, because he's always really only worn crocs or slip-ons and not been interested in anything sort of More shoe-like, if you like. And he wore these slip-on shoes for ages, and then he Got a tiny hole in one and he was like, right, no, I can't wear these anymore. It's like, I mean, it's just a little hole. It's fine. It's like, no, that is it. It's like, uh, so he absolutely wouldn't accept wearing those again. So, I thought, oh, we're doing all this again. But I thought I'd try him by showing him a bunch of shoes online. And I found some that I thought would look quite cool. I didn't say that, obviously, but I but I was like, oh, look, this has an air bubble in the sole Maybe that's interesting. And he was like, Yes, that looks great. Ordered them, got them in the size that he was supposed to be, tried them on, liked them, wears them. Wow. Classic. Just wears them now. It's just a thing. So he's got footwear that make him look like a just quite a cool little kid. As opposed to some little weirdo with slip-ons.

Helen

I mean, that's great. That's that's What a massive thing.

Mark

It's huge. And I don't know if it's because of the way I sold them or whatever, but also, you know, the fact I ordered it online and they fit straight away. So that is a huge win.

SECTION INTRO

What the flip!

Mark

Right, so what the flip moments now? These are the moments where your child will do or say something that is absolutely astonishingly confusing. And you just end up sort of shugging and walking off, being bamboozled. Do you have any what the flip moments for us, Helen ?

Helen

Do I? Honestly, Katie is full of them.

Mark

I love it.

Helen

She makes me laugh so much. So they bumped into her best friend's dad, who's also um one of the pastors at our church. She bumped in they bumped into him in the swimming pool recently when Matt had taken a swim. And she'd been teasing him, splashing him, and when I say splashing, I mean proper deluging him and really, really being quite rough around him. And at the end, before he got out, he was like, Right, I've got to go. And he pulled a nood grabbed hold of the swimming noodle that was round her and pulled her towards him. and her face, and he stopped, and she just leaned towards him and went, If you do that again, I'll bite you

Mark

I mean, she's been very clear.

Helen

He said, at least she was honest. He said, I just turned to her and I went, Oh I know. You actually will as well.

Mark

I've got a couple of what the flip moments. One from India recently. whose PDA is, you know, really blossoming at the moment. I said India, can you eat your cereal, please? And she went, Apologies, but no And I went, why not? And she went, because no. And that was it. Then no further questions. It was just like, I've I think I've been clear on this point. Yeah. She was very polite about it and very, you know, so smiling, but it was like, no, just no, no. So fair enough. Okay. Um, shut me down. Uh, the other one is J, which is just a typical J what. Just what where is your mind? What is where is this from? He was just like absently said to Tam, My mind is like a beeswax polished coconut And Tam went, What does that mean? He went, That I have a good mind. Like, of course. That I have a good mind. Right, okay. I mean, I would think that a Polished coconut would mean the opposite of that. But what do I know? Um, yeah, no, I'm sure Tam didn't really want to push it. Just texted me the nonsense That is the end of this episode of Neuroshambles. Helen, thank you so much for firstly for reaching out to Neuroshambles and sharing your Neuroshambolic lifestyle and also for coming on and chatting to me about it because it's been an absolute treat. So thanks for that. If anyone at home fancies emailing us and saying hello, it is Appropriately hello at neuroshambles. com. Or you can follow us on the socials. We're on Instagram and Facebook and Threads and also TikTok. So, yeah, feel free to catch up with us on there. If you want to find out a little bit more about Helen's new business, it's called Thrive Together Training, and they deliver Ofqual regulated first aid courses. In Littleborough, Greater Manchester. I'll put a link to all of that in the show notes so that you can support them if you're looking for that kind of thing. Other than that, I think all that remains for me to say is. Have a nice life.