Birthday Parties | “Belle”

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode two of Neuroshambles. Welcome back. I'm very excited to be back with another episode. Where I'm going to be discussing all kinds of shenanigans with neurodivergent children. This episode is going to be with a guest who will remain anonymous at their own request. So obviously it's important to be able to talk candidly about anything to do with our particular setup And our guests this week is going to be fully anonymous and their children fully anonymous. Doesn't make it any less valid at all. Any any any of the experi experience is less relevant It just gives them a little bit of um makes them a bit more comfortable about talking about their experiences without fear of reprisals from the neurotypicals who might be watching and judging. They get everywhere, don't they? So uh Yeah, so that's it. So, what we're going to experience in today's show is we're going to have a meet the guest section where I talk to our guests and find out a little bit more about their own family. And then we are going to talk at length about the topic of the week. And the topic of the week this week is going to be birthday part Parties and everything that entails. So, without further ado, let's meet the guest. Meet the guest. So I am delighted to be able to welcome our second ever guest on Neuroshambles. As I mentioned before, this guest is choosing to remain anonymous. I don't mean they're going to be silent throughout. I mean that that she has chosen a pseudonym which has been selected by her children. I'm intrigued to hear about. So this is Belle. Hello, Belle.

Belle

Hi there. Hi, Mark. Yes, I am for this evening only Belle. um, much to my husband's disappointment, as she is his favourite Disney princess.

Mark

Did he choose the name?

Belle

Um, well, no, no, n the kids did because he has a long standing reputation with his favoritism. For Belle. So here I am, Belle, this evening.

Mark

I mean, it must be a pretty intense interest if your children have noticed. Because my kids wouldn't notice any of that nons Should we watch Beauty and the Beast again, kids? Not again, Dad. Come on. Anyway, um, so welcome. Anyway, I'm delighted to have you aboard. Um So firstly, do you want to just tell us a little bit about your family, who we're dealing with here?

Belle

Yes, sure. So we live in England, down on the south coast which is always a nice place to be. And my my husband, we'll call him Johnny. We live together and we've got two wonderful children, Amber and Oscar. Amber's eight, and Oscar is six And we also have a lovely little dog who is my favourite person in the whole house.

Mark

Have you got a zoom with the dog? Or you can.

Belle

No, I haven't. We're just going to call it the dog. Hadn't thought that far ahead, Mark.

Mark

Sorry, I'll really put you on the spot there. So in terms of neurodivergencies, what are we looking at?

Belle

So Amber is confirmed as autistic, so she's been through the assessment pathway and she is also a PDAer. So she has a PDA profile as well, which is, um, a whole nother world of um it's a whole nother level. Yeah. Yeah. Take what I thought I knew about autism and throw it out the window and tread on it and uh bring in PDA. And she also has, you know, sort of a significant sensory sensory processing issues as well. And Oscar, well, he is the absolute opposite of Amber, and he he has a confirmed diagnosis of Tourette's, which is good fun.

Mark

Just throw that into the mix.

Belle

Good fun at times. for all of us. And he's awaiting assessment for autism and ADHD and has a few notes of O C D in there as well.

Mark

So we're quite a Oh, you are the true definition of a neuroshamble to be a very good one.

Belle

We are very much so. We are a rainbow, a vivid rainbow of different elements of neurodiversity over here. So it yes, there was a lot of researching going on in this house a couple of years ago when we sort of started to realize what we might be dealing with.

Mark

Yeah, it's always fun doing that. I remember when we first uh sort of suspected with with Jay and you get those online tests, don't you? Going Just to find out, you know, and just do they do this? Do they do this? Like, yes, yes, yes. Oh, they are 100% autistic. It's like, okay, I am going to get a second opinion because I don't think that BuzzFeed is going to be my go-to. opinion of choice. But it it does at least raise a few red flags enough to look at getting a more serious diagnosis.

Belle

Reddit diagnosis doesn't really get you anywhere in terms of DLA applications.

Mark

No.

Belle

What's the topic of the week?

Mark

So every time I kind of talk to a guest, I like to introduce a topic. Of the week, and I like to theme the episodes around a particular topic and really kind of explore it and talk about our own personal experiences of this. So, our topic of the week this week is birthday party Because in a neurotypical world, I think birthday parties are actually quite fun. That's my understanding of people going, oh, my kids got a birthday party. I'm just going to drop them off and I'll go to another pub and pick them up afterwards

Belle

Oh, the old drop off and come back later.

Mark

Yeah, that dream. So it's obviously a very different world in the In the world of parenting neurodivergent kids, just from our experiences of being there. So I thought the first thing I wanted to do was discuss sort of the early days. Of birthday parties. Because when you first sort of have birthday parties, really is the I think it's one of the early examples of your kids being around their peers when you're not sort of with them. Like you're in the room, but you see them amongst their peers in a similar situation And it's for me, it was a bit of an eye-opener. It was the first time I saw them and went, oh, they're very different, aren't they? So, what was your first sort of early experiences of birthday parties?

Belle

I think I don't know, when you told me that we were covering birthday parties, I think my initial reaction was, oh, for fuck's sake, really birthday parties? That's just you know, the the parental trauma knows no bounds when it comes to birthday parties. But but I think if I look back on the really, really early days, the trauma started for me even before the party had begun. You know, it was the the the choosing of the outfit And then the wearing of the outfit and then the outfit feeling horrific, but not wanting to change the outfit because that is the party outfit that had been chosen for the occasion.

Mark

And did they choose the outfit themselves?

Belle

Yes, yes, absolutely. Appropriately chosen sparkly skirt with scratchy bits on it and the pressure of choosing the outfit I mean, in this house, we have the routine.

Mark

Actually, birthday party outfits are uniquely uncomfortable, aren't they? Because you've got the chiffon and the glitter and So they've chosen the outfit and and I guess there is an awareness of how they're supposed to look at birthday party Is there or wanting to make an effort?

Belle

Very much so. And I think I see that in absolute droves with Amber. You know, she she as many girls with autism do, she masks incredibly heavily and is so desperate to fit in that she, you know, wants to conform to all of the social norms that she's identified. And if that means that she is going to a party, she has to wear an appropriate party attire, but she can't because she can't tolerate it. So then then there becomes the catch twenty two situation And she she upsets her usual routine because in this house she I will get her dressed subtly in front of the telly in a safe outfit most days. You know, distraction applied. she barely notices if I get it right. But on a party day, no, no, no, no. We have to go upstairs, we have to look in the wardrobe, we have to select the outfit, then we have to try on the outfit, then the outfit is not right. And then the outfit comes off again, usually at fast pace with some force, launching it across the room. And, you know, the whole saga starts there, really. And that's how we go on.

Mark

And that's before you even get there. And then eventually, I presume that some sort of accord is reached with the outfit. sort of peace deal is made with their own clothing.

Belle

Eventually we we usually end up in a in a safe, comfortable pair of cycling shorts and a suitable T-shirt and, you know It's uh that's far more suitable for any kind of bouncy castle as it is.

Mark

So we find some rational reason. So then you get to the party itself. And in the sort of the early days, were there any sort of indications in that situation? Because I know from from my perspective, I I remember when Jay was what about about four? We had a party at a big church hall, um, which is very echoey. I mean, he's quite sensory anyway, so it was very echoey and there's a lot of noise because kids get high on sugar and they go absolutely wild. So there's a lot of noise going on. And I was sort of expecting him to run in and go hang out with all of his friends. and he just spent his time in the corner playing with this little LED disco ball thing and basically playing with that. And I just remember s standing at the side watching, just going, That's Not come on, go and join in. You know, I wanted him to take part, and he was sort of actively not doing that. And I could see other parents just sort of relaxing. and chatting and sort of, you know, having drinks and stuff. And I'm sort of trying to will, you know, trying to kind of coax Jay into getting involved. And that was quite an early warning sign for me. Did you have any similar experience?

Belle

I think the actual act of singing happy birthday and having the cake was something that when she was really little, she really, really struggled With that suddenly being the center of attention and everybody effectively shouting words at you, and then you're excited about it.

Mark

So, just having her own party.

Belle

Yeah, I think that was pretty tough for her. I mean, with regards to other sorts of parties, I mean. I think the ones that are slightly later were probably worse because she kind of has become more self conscious as she's gotten older. Um, but you know, she would she she wouldn't necessarily always go and join in straight away. She'd be kind of on the periphery. And you know, we were lucky we are lucky enough to have a really, really good circle of friends and a really good group of friends. So those were where there are safe people that she knows, she'll usually go off with one friend and they'll kind of slink off into a corner and sort of do something. But we have had situations where you know, the the the sort of dressed up people that are brought into these parties and princesses and the things, you know, do cause some abject horror at points.

Mark

It's like, what the hell is Spider Man doing here?

Belle

Why is there a human in a costume and everybody's telling me it's something that's fun? I don't know who that is within that costume behind that mask. It could be anybody.

Mark

But I just love this in this sort of this refusal to suspend this belief at at at parties is a source of great amusement to me Because there was, I remember Past the Parcel, and Jay played Past the Parcel once. Because you know, it goes around, and everyone has to win, right? So they stop it, and then someone unwraps it, and he was. He clocked this at about three, I think, that he was going around and he unwrapped it. He took out his tattoo or his suite or whatever that it was in his layer And then passed it on, and they carried on going. He just got up and walked off. What are you doing? Yeah, he basically went, Well, I've worked it out that everyone gets one. It's been my go, so why do I want to sit here?

Belle

That seems perfectly reasonable, if you ask me

Mark

Yeah, it's cold. It's a cold appraisal of the situation, but I totally understand where it's coming from, and I can't, you know, I can't argue with that logic.

Belle

Yeah, party games is an interesting one, isn't it? I think Amber's enforcement of the rules at every possible level is one of the difficulties that she faces because she's very clear on what the rules are. The adults are very clear on what the rules are. The problem comes when other children don't conform to the expectations that have been laid before them.

Mark

Or worse, or worse, that they're allowed to get away with it when they don't conform.

Belle

Oh, yes. The the strong need for justice.

Mark

Justice is so keenly felt uh in in yeah, b with with with Jay in particular, he is furious. Like it'll throw him off for the rest of the day if if he senses injustice and it's not dealt with. Yeah, that is a big problem. So how how did Oscar deal with with birthday parties in the in the early? Days. Was he a bit more of a sociable person?

Belle

Well, he's a funny one, really, because he, once he's warmed up with his core group of friends, he is really quite sociable, but he faced with a room full of people that he doesn't really know, he will usually slink off into a corner and create some really awesome game. or something. He'll just create something that will mean all of the children flock towards him.

Mark

And he's like, cometh to me.

Belle

I am the maker of fun.

Mark

I am the body.

Belle

I don't even have to talk to you. You will flock to me and I will become your friend.

Mark

Well, we found his career then He's going to basically be a party entertainer.

Belle

Yeah, oh, I don't know. He did but he does it in parks and things as well. You know, it's like, oh, I want these children to play with me. I want them to like me. I don't want to have to talk to them. So I'm just going to create something That's going to make sure that they know I'm awesome.

Mark

If he's not already into Dungeons and Dragons, sounds like he's going to be a very good dungeon master

Belle

Yeah, I could see that. I could absolutely see that.

Mark

Yeah, I remember one, again, another very early experience. And again, this was Jay. I've got a lot of Otto stories Is coming up, so don't worry about he's not being left out here. But Jay was the one in the early days that was the, I think, I think Otto masks a lot more than Jay. Jay has no truck with masking, Bush. You want to mask? He's right 100% of the time. And everyone else is wrong. So I remember once going to a party and it came. He was probably about four, and it was in soft play, which you're thinking brilliant, right? Everyone is just, you know, can just be let loose in soft play, and he is very physical, so he likes you know A bit of rough and tumble and running around, and so that was great. And they were like, I just, I mean, I'm sure it's not true, but it felt like there were hundreds of kids there. It was like it was such a big party. And it it was really it was fun. It was it was very fun and everyone's having a good time. And I almost started to relax. Like I was just about going, Well, then nothing can go wrong, right? They can't hurt themselves And that's all fine. And then out of the corner of my eye, I see this child running past, this like fully naked. And I just caught the corner of my eye. And it was like, wow. And my first thought was, Christ, I'm glad I'm not that kid. Dad, and then I looked twice, and it was Jay. And he decided, for whatever reason, he was going to just strip it off and run around. And then I was mortified because then I'm having to I have to chase him down, right? That's the first part.

Belle

And they're quick, aren't they?

Mark

They are quick. He's really qu And also, he's not got any clothing I could grab onto and haul him in, right? So I got complacent way too early. So I'm running around trying to find him. I managed to corner him in amongst some slight squishy blocks. I managed to get him. I've got him now, and everyone's watching me at this point. You know, you everyone's eyes are on me because I am now the entertainment. And I'm holding him down. And it's like, right, I've got him. And then it's like, where are his clothes? They could be anywhere. They could be inside the little squishy tunnel. They could be underneath the slide. So I'm trying to get people to help me try and find his clothes to put his clothes on. And he's. Obviously, furious about the fact that I'm stopping him having his fun because he doesn't see the reason why he's not allowed to just ship off naked. Makes no sense to him. Why do you have to wear clothes, right? I don't remember leaving that party early.

Belle

No, really? Are you sure? I don't know.

Mark

Yeah, I don't know how you stay there after that. And just sort of like.

Belle

You didn't stay for the after coffee and biscuits?

Mark

No You don't know how you make small talk when everyone's seen you wrestling your naked child to the ground.

Belle

There is something about birthday parties as a parent of neurodiverse children that does feel like ritual humiliation much of the time for the parent. That's my general take on parties and that sense of dread when my children are lucky enough to be invited parties, you know, they they are fortunate, they have friends and they are popular with their friends. Sometimes I wonder how on earth that happens because the the you know, the love for the friend is is not reciprocal. It's like, yeah, that person Person's all right, and that person's writing me love notes, and you're like, Yeah, okay, fair enough. But you know, the the the sense of dread when you see the envelope in the bag, and you think, Oh no. I hope we're away.

Mark

Yeah, there's also the flip side of that of them not getting invited to Parties that their friends are getting invited to. That's the sort of a whole other level of, you know, like there was a whole class party once. That everyone's invited to apart from Jay, and unfortunately, he doesn't give a hoot about that But I felt really aggrieved on his behalf. I like I was really pissed off. And I like I totally get it because he's not actually that close with those people. He's not very, um, you know, he's not very sociable with those people. He's in his own world a lot of the Time, especially at school, where he's he sort of gets into his own head just to get through, I think, a lot of the time. But obviously, all the other parents are discussing the party, and I'm feeling I'm feeling left out, which is stupid, right? Because it's not about me.

Belle

No, but there's them that that militant bit of parent slips out every once in a while. We you know, sort of spend spend our time thinking, Oh, God, oh, another party. Oh, that's really nice. Thanks. Thanks for that. I'm yep, delighted, genuinely. And then when they don't get invited, it's like, well, hang on a minute, that's not very inclusive Is it?

Mark

But then also, if you did, if they changed their mind and they'd be like, oh, actually, I didn't, I don't really want to go. I just want to be invited.

Belle

Yeah.

Mark

It's a different thing, right?

Belle

But then you do get those school of other parents, usually parents that you know quite well that are friends that that kind of get it. And I will get the odd text message from from one of those parents, well, every once in a while to say, we're having a party. Do you want us to invite? Amber, or would you prefer that we just glazed over it? It's Ninja Warrior. How are you feeling about that situation? We know you hate soft play, mum.

Mark

And it's like that's really nice though. Well, just having people who get it is really lovely. And it's you know, we've got a a small handful of other parents who who get it. And who wants to include him, which is really nice. Yeah, which is it's really lovely. So actually, Jay went to a birthday party this weekend, which was a sleepover. So we're we're at the stage now where I'm not I don't have to be there. Which is great. I don't have to witness it. I I can already tell it's going to be a bit of a social car crash, but That's only based on my own sort of perceptions of what isn't acceptable socially, right? Whereas he's there, he's fine, they know him, they know him well because you know he goes to school with them. So he went to the party. Had a sleepover. He had a great time, slept in a separate room. I don't think that was pre-agreed. He just decided that that's where he's sleeping. And he had a lovely time and came back and was absolutely fine with it. Now that is Jay's experience of birthday parties. Otto is a very different cattle of fish. Because Otto wants to fit in. He wants to go to parties, but he has enormous anxiety around them Because he's not entirely sure what they're going to be each time. Every party's different, right? That's the whole point. Everyone wants to have a different experience each time. So, if he doesn't know what to expect, he is super anxious. And he's torn between knowing that there's going to be loads of sweets there. because he loves a sweet and he loves cakes and he loves party food. So there's that, and also this fear of the unknown and this sort of absolute terror Of not knowing what's going to be at the other end of the party.

Belle

Do you RSVP and ask for an agenda?

Mark

Well, we don't know because A It's quite difficult to do that and not sound being that parent.

Belle

There's a sensory store a social story to go with the invite.

Mark

Exactly. I don't want to be that guy. I'm yes, I mean, this this most of this will work for Otto, but you're going to have to ditch the clown. I don't want to be that guy, right? Though if any neurotypicals parents are listening, you should never have a clown.

Belle

No, clowns are just horrific. It's awful.

Mark

So the one of the I mean, there was one particular party that he went to, and fortunately, the the The parent has a neurodivergent kid as well, or sort of is on the pathway to being diagnosed, so is very aware. And we can be very kind of, you know, open about what Otto needs to support him. And he had an enormous amount of anxiety about the party. And they picked him up and gave him a job straight away. And he was like, that's fine. I'm doing something. So basically he had to he had a register and they were going around and picking up these kids for this party and he had to like tell them the number of the house and then when they got to the number of the house he got to tick them off and totally just instantly took his mind off the anxiety, gave him something to do, and then he had a really nice time. So that was like that's how how you can trick a neurodivergent kid. into enjoying a party.

Belle

Give them some there is that sometimes, isn't there? You know, whilst you know, I I don't ever want Amber to mask, I want her to be able to be herself. But sometimes there are times where Just supplying a little bit of mass to get over the hump of the initial anxiety means that she's then able to get tucked into an experience that she then realized it actually isn't anywhere near as bad as she thought it was going to be. And we had that very much this weekend. We took the kids on a boating trip.

Mark

Nice. Nice. How did that work out?

Belle

Yeah, that was yes. Surprisingly, nobody went overboard. It was close on a couple of occasions after I administered Oscar some Skittles and instantly regretted it Um but, you know, w once she realized that she was allowed to drive said boat and had complete autonomy over the steering, she was then able to get over you know, what she was so terrified of that was making her want to disembark whilst we were mid river.

Mark

Was that was the thought of that sh that she wasn't in control? Maybe in the middle of the morning.

Belle

So she obviously knows she is the most safest, trustworthy person going. So who better than that to drive the boat, really?

Mark

Otto had a particularly bad experience, and I think this fuels his his anxiety around parties Because it was at that age where we knew he was neurodivergent. He hadn't been diagnosed. We knew he was anxious. But he was invited to a Harry Potter part And he was quite into Harry Potter, like he quite liked the books. And it was a whole class party. And so he knew people and he wanted to go. And it was a Harry Potter party, and it was going to be a great event. And everyone was talking about it. So he wanted to go. So I was like, great. And it was a drop-off. And I was like. Okay, well, I'll drop him off, and then I will be nearby. And if there's any problems, they can phone me. So I dropped him off, and I didn't have any phone calls. I was like, brilliant. He's had a great time. I was just around the corner with India. No one called me. It's fine. I turn up and they went, yeah, he's been in the corner crying for most of the The time so Otto had the worst time, and I think partly part of the reason was that they got a sorting hat, right?

Belle

So, this is a sorting hat you can get.

Mark

I don't know if you know this.

Belle

You get in the wrong house.

Mark

No, it wasn't that. I think he was really fucking creeped out by it. Because so this is sorting out, if you if any of our listeners aren't aware that basically you put on your head and then it its face moves and then it speaks in the in the voice of the sorting hat what house of Hogwarts you are assigned to And I think they were sort of doing it as a bit of fun. The kids, you know, like for neurotypicals, that's super fun, right? It's like, oh, am I in with my friends? I'm in that one. So, but Otto couldn't see that. He didn't give a shit about that. It was the fact that there was a talking hat on his head, judging him. I mean, in his reality, that is horrible. So he freaked out and no one knew how to kind of talk him down. And also, you know, the the parents there, because it's a drop off. The parents there are looking after the party and making sure the party is a big success. So, one kid crying in the corner is not on their radar, really. Just let him get on with it, give him some cake, and hope he calms down. So I turn up and he is in absolute pieces and I had to take him home and he was just all over the place. Bless him. And uh and since then He we we uh we had a one of his friends came for a sleepover and they brought a they brought a sorting hat with Them.

Belle

Oh, no. Oh, no.

Mark

It was like, I can't sleep in the room with that sort of yeah. We've been here before. So I had to put it outside.

Belle

How to ruin Harry Potter for somebody in one foul suit?

Mark

Exactly. So that was a pretty traumatic experience for him. Bless him. Which also means now that I have to go to every party with him.

Belle

Yeah, I've been on that. I've been on that for a while, unfortunately. I've never been able to leave.

Mark

I mean, it's fine, isn't it?

Belle

I mean, it's I am that parent that, you know, it's true. The neurotic one that already always stays.

Mark

See, I'm I wouldn't mind being seen as the neurotic one that always stays. I have a feeling that I'm pegged as the one that the dad that just really loves party fo That's it, isn't it? That's the stereotype.

Belle

The neurotic mother or the dad that likes eating all the kids' food.

Mark

Yeah, I don't know which I'd prefer, to be hon But either way, once he gets into it, he sounds a little bit like Amber. Once he's into it, once he sees the shape of the party. He's totally fine. He loves it. He's absolutely fine with it. But it does take him that while to warm up and to kind of, yeah, to live with it.

Belle

I think for Amber, it very much depends on the party. I mean, I. I detest soft play. Anybody that knows me knows how much I detest, personally detest soft play. And we recently got invited to a soft play party for a very, very good friend of Amber's, and she was dead set on going because Was her best friend, she's like, Now I'm going to that party.

Mark

So we managed to get it. Zebra likes off late. Is she okay with it?

Belle

Well, yeah, she says she does. but the sensory overload is often and the other children that she can't control and being bumped and pushed and wiggled against is is not great for her. but she really pushed through it. So we went mob handed, we went two to one because she's she's heavy now. I can't lift her out of awkward spaces anymore on my own without manpower and it it's tricky. But she she did she coped largely very well. She was heavily supervised, and I think that helped Um, but she did cope until it was time to go and have party food and she that her her barrier to that was everybody was already in the room, parents and all. She'd got distracted by something else, probably a piece of fluff going by or something, and she couldn't walk into the room because all the all the all these faces, all these people were in there. So she could march off into a soft play But she couldn't walk into a, you know, a fairly orderly room with all these faces. Yeah, she just she just couldn't walk into the room. But I think her cup had just filled up over the course of the party and she just was like, Nope.

Mark

So she didn't have any of the party food?

Belle

She did eventually. I think there was some some snacks consumed in the hallway. next to a radiator or something along like that. And then she eventually sort of sat in the corner of the room by the door so she could escape. at pace if needed. But you know, she got through it and she, you know, sense of achievement for her, she desperately wanted to go for that friend who she holds in very high esteem and she did. Yeah, which is like

Mark

what a what a hu huge effort. And and I don't know if the they the friend kind of understands or recognizes how much of a a big effort that is, but that's, you know I think some of them do.

Belle

The parents do. There's certain parents that get it, you know, and get her were just, you know, delighted that she actually felt that she could come on that day. And she could actually walk through the door. So, you know, that was quite a big thing for her, I think.

Mark

Yeah, I think Otto had a similar food experience Recently, that no one had explained the kind of buffet protocol to him. I don't quite know. I don't know what needs explaining, to be honest. That is one actually that we dropped him off at because it It was a very good friend of his, and he felt comfortable. And we sort of said, Do you want us to be there? And he was like, No, that's fine. And he went and I think partly he'd done something in the morning. I d something I can't remember, like he played football or something in the morning. Um, so we're already sort of chancing it a little bit be Because there's a lot to do in a day, and then there's a party, and he was running around at the party, and then it came time for the food, and no one had explained to him where you get your plates And he just couldn't ask and he couldn't like he can't strategize. So he can't like ev even ask a friend to go and get him a plate or find a plate from somewhere.

Belle

They just get lost, don't they?

Mark

Yeah, Exactly. And and he really loves party food. I think I've explained this. And he absolutely loves party food and he had no way of accessing it. In his head, there was no way of accessing it. Obviously, anyone else would Would say, Where are the plates? And or not even have a plate, just go and grab a fist full of you know, chocolate fingers or something. But he just lost it and then I says, you know, on the way home, I said, How was the party? He was like, I didn't have any food. I'm really, really hungry. I really want some food. I didn't have any food. It's like, oh, bless him, bless him. So, yeah, we had to give him some party food of our own when he came home

Belle

Well, that's the kind of thing you do, though, isn't it? You know, you fill in the gap. Yes, yeah, exactly. Exactly.

Mark

And where possible, you spot the gaps in advance and then strategize around it. And sometimes we're getting better at it, I think, of understanding how they're going to respond in certain situations. And navigating that, but but sometimes you just miss it a little bit. You just miss out, you know, you miss one of the signs, and then it becomes a Bit of a yeah, I usually kind of do the do the scan around the room.

Belle

Is this now the kind of party? Is this the kind of party we're going to get? A party bag or a sweet cone or nothing at all. What kind of party is that? Because I really need to manage expectations before we get to the end. And there is no party back. I don't. I just do the parental scan. Of can I see clues as to what the end of the party is going to look like.

Mark

Because again, you don't want to be that parent, do you? No. Is there going to be a party bag? Party bags in themselves are just. Awful for Otto in particular, again, because they're just full of small bits of tat Aren't they? Basically, liked tiny bits of plastic that are going to break or tattoos, and he doesn't like them. Um, or uh those, you know, the little squishy things that you throw out windows and then they like work about twice and then they fall on the floor and collect dust and then they never stick again. Those awful things, bouncy ball, but just small things, and Otto gets really attached to them for whatever reason. So he insists that night. that he's going to sleep with them, right? Now the problem is Otto's executive function is absolutely chaotic, right? He doesn't have a strategy Of where anything lives. So he will use something, and when he's finished using it, he'll just leave it where it was. And he won't remember that. So then, when it comes to bedtime He's like, right, let's go to bed. We're like, oh, where's my little, you know, where's my little bouncy ball from the party? It's like, I don't know. Where did you put it? He doesn't know. Obviously, it's a stupid question. I mean, of course, he doesn't know. So then, before he gets to sleep, we have to find wherever this bouncy ball is in the house that he's had at this party. We have to like hunt for it. We've got the whole family looking for it Just so he can get to sleep. And so it is like this little just birthday shrapnel that is transported home basically.

Belle

Responsible for mental injury.

Mark

Yeah, exactly. Exactly. I hate it. I much prefer, you know, just a bit of cake. you know, um, that that's fine.

Belle

But well, you get I I get with with Oscar sort of, you know, at parties. I mean, he's fairly he's he is reasonably self sufficient. His his boundaries aren't always great. And I think as he gets older and his his ticks become more inappropriate, which is a a little nugget we're starting to see developing at the moment.

Mark

Parties as well.

Belle

Yeah, yeah. You know, it's one thing running around Primark shouting booby chains at the underwear section, but, you know, I d God knows what he's going to come out with at a party.

Mark

Has he learned swears yet?

Belle

No, and that is the one thing that's quite amazing actually that I don't I don't quite know how we've avoided it because Amber is can be very can act out quite a lot in some very, very physical ways, and she can come across quite unpleasant towards you when she is dysregulated I think is the polite way to put it. But she asked me once, what is the F word? And I and I I sort of asked I said, What do you mean? And she said, Well, everybody keeps saying the F word, but I don't know what the F word actually is. And I said, Okay, all right, then I can I can deal with that.

Mark

So I told her what it was.

Belle

Yeah, I told her what it was. I said, it's just a word, but when you say it, some people get really upset about it. And it's the kind of word that if you say, you might get in trouble. So do you know what? It's just best not to say it at all. Do you know, but it is just a word. And after that, she's like, Huh, okay, fair enough And she's never, never her her swear word of choice is biscuits. Well, that's she's never told me to fuck off, she's never said anything, even in the height of anger. No, she biscuits Is dah biscuits. That is her swear word of choice.

Mark

That's amazing. Well done for that.

Belle

Oscar, on the other hand, I'm waiting. I'm waiting. It will happen.

Mark

So if he doesn't know the swears, then he's not going to use them

Belle

But as soon as he knows that the ticks have not registered swear words yet, the ticks have registered poo, bum, willy boobs That's what the ticks are. Booby chain is another word for bras, which I'm not quite sure where that's come from.

Mark

It's like a Victorian gentleman.

Belle

Booby chains.

Mark

I saw that woman's booby chain.

Belle

Exactly that. Exactly that. So, you know, so the coprilalia element, the inappropriate, the socially inappropriate element of Tourette's

Mark

Is in can you explain coprelalia to me? I've heard of it, echolalia.

Belle

Yeah, so coprelalia is um ticks that are socially inappropriate or offensive. So when people classically think of Tourette's, they think of people swearing uncontrollably. Well, actually, I think even less than ten percent of people with Tourette's have the coperenalia element. But coporlalia I think is I'm not an expert by any stretch, but it's not defined just purely to words or sentences that are socially inappropriate It can be actions and physical ticks that are socially inappropriate. So, quite often at the moment, I can't wear a vest top because he just comes up and pulls it down. you know, so that and that's clearly a tick because then he gets really upset that he's done that uh and he just feels weird about it. So, you know, there's definitely things there and, you know, playing football and standing in the queue and pinching his friends' bottoms, you know He's going to get himself into all sorts of bother if we're not careful. His close friends do. He's got a really lovely group of close mates. and their mums are all really on board. They know they know him really well. They know me really well. And I'll quite often, you know, if we're there chatting at, you know, sort of Football or whatever, and I see some people like, oh, I'm really sorry, guys, that's a new tick. You might want to go and explain that to you. If they come home and start mentioning why Oscar keeps grabbing my bottom, you might want to explain that it is his ticks. And he's quite open about his tics as well. Sometimes I'm not always sure there are certain things that are ticks, but it's always difficult to tell the difference. But you know, so parties And he's very black and white. He's very frank about things. He says things as he sees it. If he has a mouth at the cake that he does not like, that's disgusting.

Mark

So that's I mean, where Tourette's and autism meet? Is he autistic?

Belle

We don't know yet.

Mark

It's quite likely.

Belle

He's definitely got it.

Mark

There is no filter there, isn't it?

Belle

No, no, and that's it. He has no filter. He has no filter He's got the impulsiveness of ADHD and the no sense of risk. And he's got the literalness and lack of Social awareness that comes with autism, and then he's just got tics that just, you know, sabotage him every possible opportunity.

Mark

Oh man, it's a it's a lively, lively situation to be in at a kids' party then. Okay, what we haven't yet kind of fully touched on in terms of birthday parties is how your kids whether your kids want to have birthday Birthday parties, whether they enjoy having the focus of attention on them on birthdays. What do you do? What is their experience on birthdays?

Belle

I think we've had a lot of success with Oscar being very picky about who he wants And you know, he has said, I don't want my whole class because I don't like my whole class, so I want to pick the right people to come to my party And that was what we had last year and he did, and it was wonderful. We had it at home in the garden. We're very lucky, you know, we have we have a nice garden which Is great, and the weather was glorious because he's um his September um birthday, and he always seems to get good weather for his birthday. And we had a mad professor who came and did science experiments, but Oscar didn't want him to be dressed as a mad professor, he wanted him to be dressed as a pirate. So it was a pirate doing science experiments. And we had a pinata which was wait a second. How did you explain that to the member for the no, he was I can come and do a pirate, you know, sort of performance Or I can do a mad professor performance. And I gave Oscar these options, and he said, Well, I want him to do the science performance, but I want him to come dressed as this. And, you know, so he did and he was great actually.

Mark

We I would happily book him again.

Belle

But we we did get a pinata, which I'm not sure wasn't perhaps a slightly inappropriate situation in the end because the piñata was modelled on on Oscar's favorite soft toy at the time, which happened to be a cow. So we hung the cow from the tree And the cow was beaten to smithereens, but we had quite a foot Gabi's favourite toy. And we'd hung it from a tree and I just couldn't get this image of with just we're we're beating this animal that's hanging from the tree in my garden and I'm not sure if I'm scarring these kids for life.

Mark

How did he cope with that?

Belle

Yeah, no, he was fine.

Mark

He he he he thought it was great.

Belle

So um more that was probably just more me being neurotic. But you know, he he had a great party and um with the parents, we had wine. I helped him handpick his best friends and the best parents. And it was great.

Mark

It was really nice. Excellent. Excell

Belle

Amber, on the other hand, she prefers an activity with a small group of friends and that that works best. But she did have a pony party on the day though. Do you remember those storms that we had? We had like Storm I can't remember what it was, Storm something and then follow swiftly followed by Storm Franklin. Um, and it was horrendous. Yeah, Storm Franklin. So that was the day that was the day of Amber's pony party in the woods. And we were from the get-go that morning, 'cause it had all been very carefully planned, and she was very in control of everything I was getting telephone updates every half an hour from the pony party saying, you know, we we can't go ahead at the moment, but we might be up to in half an hour. And so I was on the edge of my seat thinking, Oh, my Lord, am I going to have to cancel this party with half an hour's notice? It was just horrendous. But they it went ahead. and she was in charge of everything. She was on a horse, which she loves, and she was com in complete control, ordering everybody around on a scavenger hunt in the woods

Mark

On the horse, were they on foot?

Belle

Which is like a mounted police person. She was the leader of the pack.

Mark

I love that. Okay, okay. I like the idea that she was the only one allowed on a horse.

Belle

No, no, they were allowed to scavenge for her. Yeah. But it surprisingly went all right.

Mark

That sounds fun. Okay, good. But there is that that that Sort of nervousness of the change of plans going awry. I mean, in terms of my lot, Jay Arnotto don't really want parties in that sense. So, what we do for our for our birthdays is basically the kid is in charge of everything. I thought yesterday. Within reason.

Belle

The movie, yesterday.

Mark

Yeah, it is yeah, it's very much like yesterday, but we we did that for birthdays before we saw the movie. So, we didn't take that as an inspiration. But they basically get to choose the menu, which is great. So, we have ice cream sandwiches for breakfast. Sometimes, or just cake, and it's got I really love it, and there's like no demands, and they're just basically they get to say what we do, so it invariably involves what I can't believe I'm telling this on the podcast. It involves Daddy Total Wipeout, which is basically me on the trampoline with the kids. Just throwing them around and recreating some stuff from Total Wipeout on the trampoline. So you know this have you you've seen Total Wipeout, you're familiar with the programme Have you seen the sweeper? You know, the thing that sweeps and knocks them over. Well, I get a a r a camping roll mat around my arm, right? So I'll wrap it around my arm.

Belle

Sounds like some kind of budget version of Gladiator.

Mark

Yeah. It's very budget.

Belle

Do you have to wear a costume?

Mark

No, I don't. No, I don't. I think we should get you one. But having said that, if my kids decided that I needed to wear a costume, I'd have to wear a costume.

Belle

It would be pants on your head, clearly, wouldn't it?

Mark

Yeah. So basically after after a quite a long time of Daddy Turtle wipeout, it's just they get to do what they want. They, you know, play computer games or watch a film or uh they're in charge and that's actually really nice 'cause there's no demands and they feel totally special for the day. And we don't have to invite other people. Having said that, India's neurotypical, potentially suspected, neurotypical. So her experience this year was very different. She wanted a party for the first time. And one of the things she wanted for the party. Was no brothers there. She actively just was like, I want to have my own house with my own friends and not have them there. And you know, she's in charge, and I get it, I totally get it, and it would have been too much, you know, for her. She it was only a small group of her friends, there was like six of them, they were super, super noisy So, it wouldn't have been good for the boys anyway. So, Tam took the boys out and they went to get pizza or something Like that, and I just you know hosted a group of absolute feral hooligans in the house, and then we had a pizza party, and India had a lovely time, and the boys. liked it as well. So, uh yeah, that was quite interesting. But actually i they were very, very noisy in our hou Old, and they were like absolutely wild, and India loved it. Um, but even though there was, you know, seven kids full of sugar and excitement it still was calmer than it was with two neurodivergent kids in a three-person household. Because this you can sort of predict the chaos at a kid's party.

Belle

You're not calm. Because the unpredictable nature. monitoring for the unexpected.

Mark

Yeah. Yeah. It's the it's the constant sort of yeah, everything like is booby trapped almost with Mili Magic that the something is going to kick off that you hadn't anticipated So you've got you're on edge a little bit more.

Belle

So that the parent experience of that being on edge all of the time is it must be how they feel all of the time. I was pondering this the other day when I was. rolling my eyes inwardly to myself, going, Oh, go, here we go again. I really don't need this today. And it's like, well, actually, actually they don't need it either. You know, you have to check yourself sometimes, don't you? And remember to dig your empathy back out of the hole it's called into and uh try again.

Mark

Yes, no, it is it is true. But it's it's fully justified sometimes. The the eye roll is the very least we deserve.

Belle

It's the only thing that's sacred.

Mark

Hello, please forgive the brief intrusion into your podcast listening, but I just wanted to alert you to our social media presence in case you Fancy giving us a follow. We are on Instagram and Facebook and Reddit and also Threads. Why not? If you also want to email us at the show. For example, if you've got a topic suggestion you want to hear us talk about, then you can email me at hello at neuroshambles. com. Also, if you like the show, and I very much hope you do, then like it on your podcast platform and also subscribe so you know when the new episode's dropping. And if you feel particularly favourable towards us, even give us a review. That'd be amazing. And just say some nice things about us to let other people know that this is not just going to be a massive waste of their time. You know how it is. Alright, that's it for now. I'll let you get back to the pod.

Belle

It's not all rubbish.

Mark

Okay, so I wanted to also do just to kind of wrap the show up, the the The positive side of neurodivergent parenting. I wanted to kind of do the it's not all rubbish section where we look at the positives. I'm just wondering if you brought anything to the neurodivergent champions

Belle

uh table so yes I have so I think you want to champion yeah my my my champion actually hopefully bodes good for your holiday if you're if you're flying out of Gatwick. So last year, we booked a last minute trip to one of the Canary Islands and flew through Gatwick Airport. And we'd had we'd we'd flown a couple of times with the kids and it was always hell on legs, as you can imagine. But this time we went a special assistance. And it was brilliant, actually. The staff at Gatwick Airport were fantastic. And they will say they know their stuff. And I think the best example was we obviously highly anxious Amber and Oscar happily bouncing around, very excited, incredibly hyperactive. But we when we got we were escorted to security, supported through security and went through the the security gate where of course husband always gets stopped to have his pockets searched every single time. It like I don't know what he does, whether he sews coins into his belt or something. Um but it happens every single time. and maybe it's just the way it looks, I'm not sure. But this time a random search has to take place, and of course it's going to be Amber.

Mark

Oh, wow.

Belle

And she's already, she's there.

Mark

She's on the cusp of losing her shit in the middle of security.

Belle

And it's rammed with people. And thank God we went special assistants and my sunflower lanyard was shining, but I could feel the sweat building on the back of my neck, going, How are we going to get out of this?

Mark

Was it like a Jedi thing? It's like, you don't need to check this ch

Belle

This Gatwick member of staff, she came over, she took one look at me and saw the abject panic starting to appear on my face when she said that there had to be a search. and she saw this small, blonde, hostile looking eight year old looking like she was going to attack. And she she said to me, she said will she go to a different room? Would that work? And I said, no, you're not you're not going to get her to move from this point. We are this this is I don't know how this is going to go. It could go very wrong very, very quickly. And she went, right. and she sat down on the floor in front of her, cross legged, and I I don't know I don't know what kind of magic she was made of, but she just managed to I don't know. Distracts diffuse the situation and subtly conduct a search that Ab was really none the wiser of.

Mark

And I just did it.

Belle

And I I thought I was going to pass out because the panic had finished me off by that point. And we we trotted out of security and found our little man in our buggy that was driving us around and went and got some snacks.

Mark

You've got a buggy as well. Is that what you get from a little golf buggy thing, which of course is a novelty?

Belle

And I'm sure as you're aware with the whole PDA thing, novelty is you know, one of the things that that gets us through sometimes, you know, it can get quite expensive, the novelty element, but but novelty is, you know, Amber loves holidays. She loves going to new places randomly. Completely bucks the trend of of being autistic, I think, sometimes. But the novelty of something like that is distracting enough to kind of overcome the anxiety sometimes.

Mark

And so did you prebook the special assistants Of course, and we're going and then just rocked up and went, We're here.

Belle

We're here. Guide us. Do you need a wheelchair? No, we don't, but we want one of your fancy buggies. Thank you very much. Yeah, and they were fantastic.

Mark

So I would how far in advance did you book it?

Belle

This is me trying to work it too. A good few weeks. No, I don't think you have. Give it give them a ring. Phone the airline. Give them a ring.

Mark

I will do to be honest, Tammy's probably already on it. They were very organized.

Belle

Tiny wins.

Mark

Do you have any tiny wins for us?

Belle

This particular episode? I think, I mean, the tiny, tiny win of the last week is that I bought some Crocs for Amber. She'd had a pair of non brand crocs that she wore religiously through last summer that were a slightly different shape. And I was like, Oh, they've been really useful I'm going to try with some crocs. So she chose a pair online, wonderful tie-dye ones, but they had like a fleecy lining. I thought, wow, that's going to be great. They're going to feel like slippers But then when they arrived when they arrived, I took one look at them and identified an immediate problem. They had they had sown I don't know why they do these kind of things. I mean, who who thinks this is a good idea? But they had sown this plastic label, and they had screwed it and stitched it to the lovely soft fabric and attached it to the plastic croc underneath. So I thought, oh.

Mark

Right, so there was no getting out of that.

Belle

There was no getting out of it. No getting out of it whatsoever. So I thought, all right, okay. My mum's popping round tomorrow.

Mark

My mum. Did you try? Did you try it on in the verse?

Belle

Yeah, just say, immediate rejection. If they, if she would notice, yeah, immediate rejection.

Mark

It's like as if, as if, yeah, someone who is so highly sensitive is going to just be like, yeah, these are. Fine. There's no just kind of letting stuff go.

Belle

As soon as the foot went in, it got launched across the room. So, but my mum was coming over, and my mum does a lot of sewing work and she makes a lot of things. Which is coming in quite handy at the moment. And I just kind of gave it to her. I said, right, we've got two options. We either try and get this label out or we find some fluffy material to stick on it. So we tried the finding the fluffy material to stick on it. It wasn't the right colour. It didn't perfectly match. There was a little gap. It didn't feel quite right. But then eventually Mum had spent the day and she'd gone home. And what I didn't realize she'd managed to do is unpick the sticker and pick the glue off of whatever was attached And we now have crocs that are fully functioning and have been worn out of the house twice.

Mark

These are deluxe crocs, though.

Belle

Deluxe crocs.

Mark

I mean, these are fleece lines.

Belle

Yeah, and there's something when you spend a lot of money on an item and then you have to bastardize it to make it work for you.

Mark

It just feels very counterproductive. It does, but having said that, I think your mum's not got a new sidel

Belle

Oh, she has. I'm training her up.

Mark

Buys in bulk. Training her up. If she buys in bulk and starts fleece lining all those crocs, put me down for two pairs at least.

Belle

She's also good at re-stitching knickerhems as well. Okay.

Mark

This is it. We've got it with the neurodivergent tailor. This is a perfect.

Belle

I'm training her up on school dresses.

Mark

Yeah. Oh, God. That's a yeah. Clothing is a whole other, again, another podcast episode that We will be delving into at some point as well.

Belle

So that's the win of our week, yeah.

Mark

That is that is again tiny wins to normal people. I say normal people. That is such ableist bullshit, isn't it? Sorry. For neurotypical people. I've got to catch myself. For neurotypical people, that's not. barely worth talking about.

Belle

It was a three hour trauma that cost me forty quid.

Mark

Exactly.

Belle

You know.

Mark

But now you've got shoes.

Belle

Now we have shoes.

Mark

Okay, the the final thing I want to do, and I because, you know, we spend quite a lot of time talking about our kids and how how the challenges that we face and the you know We delve a lot into the things that they find difficult and the struggles that they have, but I don't feel like we spend enough time focusing on the wonderful parts. of our kids, because there are so many positive aspects of them. And I wanted to just take a little moment in each show to highlight the best things about your kids.

Belle

The best things about my kids. Well, I think with Oscar, it's by far and above the combination of his intellect and his sense of humor And comparing having a stone in your shoe to Russia and Ukraine having a conversation a few weeks ago was a real crowning moment for me. And with Amber I know where do they get him from at six. And with Amber, I think it's her just her She always seems to see beauty, even though she can't always explain it. And and she started writing or typing on the computer a short story the other day, like creative writing. And I sort of started reading the first paragraph she'd written, and it was just talking about this girl and her mythical powers and stuff, but she described the landscape that the girl was in at that moment in time, and she just picked up on all these little details and used all these words that just painted this image in your head, and it just I don't know, it's like somebody opened a window into what she sees when she kind of goes off onto her own little world. And it was just sort of like wow.

Mark

You know, it was like a real just a little nugget.

Belle

And I was like, oh, that was lovely.

Mark

Yeah, absolutely. Oh, what a yeah, what a wonderful insight. Well, I think that's it for this episode. Thank you so much for coming on, Belle, and sharing your experiences of birthday parties and your family. Yeah, thank you very much for joining me. And hopefully, we'll get you back again at some point to talk about any of the other myriad nonsenses we have to deal with.

Belle

Splenty there.

Mark

But for now, have a nice life.