The Untypical Parent™ Podcast
Welcome to The Untypical Parent™ Podcast where doing things differently is more than okay. I'm here to challenge the norms and open up conversations that go beyond the stereotypical child, parent and family. This is your go to space for additional needs families to find your their backup team—the people who get it. We were never meant to go it alone! We’ll be exploring a wide range of topics, because every family is unique and there’s no one box fits all when it comes to families.
Are you ready?
Come join me?
The Untypical Parent™ Podcast
"The Lone Neurotypical Crouton in a Spicy Neurodivergent Soup"
Ever felt like you're the only parent struggling while everyone else seems to have it all figured out? Then this raw, honest conversation with Mark is exactly what you need.
A self-described "undiagnosed neurotypical" dad raising three neurodivergent children.
Mark candidly shares when he stopped seeing his son's behaviour as defiance and started understanding it as communication. Mark talks about how he learned to meet his children where they are rather than forcing them to meet expectations.
We talk about the complicated emotions that come with diagnosis (both relief and grief), the freedom that comes from creating a home where neurodivergent kids can truly unmask, and why finding your tribe can be the key.
Listen now, and discover how letting go of "perfect parent" ideals might be exactly what your family needs.
You can find Mark on:
Facebook: https://www.facebook.com/Neuroshambles
Instagram: https://www.instagram.com/neuroshambles/
And Neuroshambles podcast: https://www.neuroshambles.com
We spoke about the book The Explosive Child by Ross Greene and the support group that Mark found so helpful was mASCot: https://www.facebook.com/ascmascot
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I'm Liz, The Untypical OT. I work with parents and carers in additional needs and neurodivergent families to support them with burnout, mental health and well-being. When we support parents, everyone benefits.
🔗 To connect with me, you find all my details on Linktree:
https://linktr.ee/the_untypical_ot
☕ If you’d like to support the podcast, you can buy me a coffee here:
https://buymeacoffee.com/the.untypical.ot
And if you'd like to contact me about the podcast please email at:
contact@untypicalparentpodcast.com
I'm Liz, The Untypical OT. I work with parents and carers in additional needs and neurodivergent families to support them with burnout, mental health and well-being. When parents are supported, everyone benefits.
🔗 To connect with me, you find all my details on Linktree:
https://linktr.ee/the_untypical_ot
☕ If you’d like to support the podcast, you can buy me a coffee here:
https://buymeacoffee.com/the.untypical.ot
And if you'd like to contact me about the podcast and join the mailing list please email me at: contact@untypicalparentpodcast.com
Welcome to the Untypical Parent Talks podcast, where doing things differently is more than okay. I'm Liz Evans and I'm the Untypical OT and I'm your host, and I'm here to open up conversations that go beyond the stereotypical child, parent and family. This is your go-to space to find your backup team, the people who get it. We were never meant to go it alone. Your backup team, the people who get it. We were never meant to go it alone. We'll be exploring a wide range of topics because every family is unique and there's no one box that fits all when it comes to family. In this first series, are you the Perfect Parent? And, spoiler alert, there's no such thing. We'll be exploring how we can support our kids, our families and, most importantly, ourselves. No judgment, just real talk about meeting everyone's needs without leaving anyone, especially parents, behind. Are you ready? Come join me.
Speaker 1:This podcast episode is proudly sponsored by Something Profound. They create funny t-shirts, mugs and, more specifically, designed for neurodivergent people and those with chronic illnesses, because we all deserve a good laugh. A lovely friend of mine gifted me a mug that says not enough spoons to give a fork, and every time I use it it makes me smile. It's such a great reminder to embrace the chaos with a little bit of humour. Want to grab your own, or know a friend who could do with a laugh? Head over to somethingprofoundcouk and use the code L-I-Z-U-O-T. It's case sensitive, so you'll need to use capital letters for your 15% off your order. And don't forget to follow Sam, the founder of Something Profound. You'll find her on Instagram and Facebook at something underscore, profound underscore clothing. If you've got something to say, say it with Something Profound.
Speaker 1:I'm delighted today to welcome Mark to the podcast. As well as a job in IT, mark is a writer, podcaster, public speaker and permanently frazzled dad of three neurodivergent children. Mark co-parents amicably and enthusiastically with their mum, who was also recently diagnosed autistic ADHD. As someone who describes himself as an undiagnosed neurotypical, there are a lot of competing needs in his family, so he decided to wrangle his chaotic experiences into a regular podcast called Neuro Shambles, in which he speaks to guests about the lighter side of parenting neuro different kids. Mark, thank you ever so much for joining us on the podcast today. Lovely to have you.
Speaker 2:My pleasure. Absolutely delighted to be a guest on someone's podcast for a change well, is this the first time? Uh, no, I've done it. I've done a few, but I always love it.
Speaker 1:It's great because I don't have to edit afterwards podcast stuff exactly and then you don't have to do any editing after. Yeah, well, well, welcome to the podcast. Our series this season is Are you the Perfect Parent? And I don't usually give people much of a chance to come in and chill out or kind of ease people in. I just go straight in there, mark with Mark. Are you the perfect parent? Has anyone actually said?
Speaker 2:yes, to that.
Speaker 1:Yes, they have, and they laughed hysterically yeah, because they're not serious.
Speaker 2:I think I'd be deeply suspicious of anyone who says, yeah, I'm absolutely the perfect parent Because I think it's possible to be perfect, is it? I think it's important to make mistakes because you learn from mistakes. So if you think you're nailing it every time, I don't think you're reflecting enough and you're not learning enough to grow as a parent, and as a parent of neurodivergent kids. There are curveballs all the time, like you know, you, that you have to constantly adapt and update your information, not just for to accommodate neurodiversity as a whole, but for each of your kids as well, because you know, I've got three kids and their profiles are all totally different. So I'm learning day by day. Um, so no, I am not the perfect parent. I can confidently say that I'm one of the top two parents they have.
Speaker 1:I like that. I like that that's great.
Speaker 2:I've learned and I am pretty good at now understanding the limitations of what we're working with, you know, and what their challenges are, and and and changing my approaches, uh, to do what suits us rather than how I feel like I'm supposed to parent that's the important bit, isn't it?
Speaker 1:is that there's this thing out there about how you should parent. What is this perfect parent? And actually our kids do not fit that they weren't given the memo.
Speaker 2:No, absolutely.
Speaker 1:And in the early days.
Speaker 2:You sort of look at that and go my kids are not doing any of this stuff. They're supposed to be standing in naughty corner and then learning from this lesson. But no, I think as a metaphor, if you'll permit me.
Speaker 2:I think, parenting my kids is like having to cook a family meal the day before a big food shop. So you might not have all the ingredients that you want to be working with, but this is what you've got, and in order to cook up a sumptuous feast that will appeal to everyone, you've got to improvise right. You've got to change your expectations. You've got to change your expectations. This is not going to be a banquet. We're just going to get everyone fed and happy with what we have, and I think I've become phenomenal at being able to improvise and cobble something together that is vaguely appetizing.
Speaker 2:It's not to everyone's taste, it's certainly not to neurotypical parents' tastes, but that's not my business and you know what they, how they view my parenting or the way that I couple together a meal is not really a concern of mine. Uh, it works for us and I think I don't know if that is stretching the metaphor too much there, but um, no, I think that's a perfect metaphor you've got to deal with what you've got yeah, it's what you've got to deal with, isn't it?
Speaker 1:and, as you say, with you things change all the time, and I think you kind of alluded it to earlier when you first started to talk about it. Was that actually, when you think you've got it now with one kid, the next one, it doesn't work with it doesn't work yeah, never get complacent yeah, that's what yeah, everything is a phase, the good and the bad mark.
Speaker 1:Tell us a bit about your family then, and kind of what's who, who's in your family, what's kind of what kind of um diagnoses, if any of you got in your family I am surrounded by neurodivergence.
Speaker 2:Um, so I have three children. I've got jay, who is 11, and he's diagnosed autistic adhd. Yeah, um, I've also got otto, who is nine, also diagnosed autistic adhd, but with a wildly different profile. He's much more anxiety based yeah um than jay.
Speaker 2:Uh, jay is a to all intents and purposes pda. I don't think you get a diagnosis for that, but I know a lot about pda now and he definitely ticks all thoseents and purposes PDA. I don't think you get a diagnosis for that, but I know a lot about PDA now and he definitely ticks all those boxes. And then I've got India, who's my daughter, who's seven has also recently diagnosed autistic, almost certainly ADHD. We're just starting that knobbly pathway now, uh, and also, I strongly suspect, has a PDA profile as well. My former partner the kid's mum is Tam also last year was diagnosed autistic ADHD. So I am the lone neurotypical crouton bobbing about in a spicy soup of neurodivergency in my household.
Speaker 1:I love that description like so, in a very short space of time you've had a lot of diagnoses in your family yeah, there's been a lot to to recalibrate.
Speaker 2:I think it's the best way of describing that going oh oh. And when you think, oh, I think I know what autism is, oh, then this person's autistic as well, and that's totally different and okay. But surely this one's not autistic? Oh, they're autistic, adhd as well, but it's a totally different thing. And so I'm finding myself having to just learn more and more about how it presents and how to accommodate them.
Speaker 1:And it's all fun how have you done that mark? How have you found? How did you find the information?
Speaker 2:yeah, oh hell, oh yeah, I mean, um, well, I am I, I I like to know as much information as I can, anyway, just just with anything, I I'm a researcher and a fact finder, yeah, um. So I did a lot of reading about it and a lot of understanding about it, um, and found local neurodivergency communities, because a lot, a lot of what I pick up in terms of strategies doesn't come from the books very often, with the exception of one that I'll mention in a little bit, um, but it comes from other people and and understanding what works for them and sharing anecdotes and stories and, um, it's really important to realize that you're not the only one going through this, and it's sometimes it can feel like that. Well, a lot of the time it can feel like that when you look across the school playground and you see all of the neurotypicals you know, uh, behaving in a certain way, and yours are like up a tree, or you know like, try talking to a bin, I've had that recently um, you know, it's all of this. You're like my kids are different, so you feel a little bit isolated.
Speaker 2:So finding that neurodivergent community, the community of neurodivergent parents, yeah, has been amazing, because then I. I feel like they've everyone's got everyone's back. You know going. You know that you can put a question out there and go, look, I'm really struggling with this, and someone will go yep, yep, had that been there. This is what worked for me.
Speaker 1:You might want to try this, and that's much more valuable and targeted than just looking at the whole of information out there on neurodivergency and I think what's interesting for me is that when we talked before is you talked about setting up your own podcast, because obviously Mark has his own podcast. It's called neuroshambles is a great podcast, um, but as part of your conversations on there and the people that you have on there, I suppose I'm interested a little bit about where your idea for neuroshambles came from. Where did that come from? Was that kind of a wanting to learn more?
Speaker 2:I don't think I don't think primarily it was about wanting to learn more. Uh, though, that has been an amazing offshoot of it. I talk to loads of different guests from all different areas, lots of professionals and just parents on the front line and lots of experts, and I've learned so much just from that, like I say, tapping into the neurodivergent parenting community uh, so that has been amazing, but that wasn't why I started it. I think I started it because I did. You know, when I was in the research phase of all of this, I wanted to know more about autism and ADHD and how that presents, and there are a lot of books out there and there are a lot of podcasts out there.
Speaker 2:But all of the podcasts I listened to were really a bit serious and yeah, um, and felt like I was being given homework. I was like, oh, here's some other things, other strategies that I'm failing to implement or that I haven't tried, and what it didn't, what I wasn't getting was the sort of the human aspect of that of like it's so hard to get my kids out of the door. I can't be the only one going through this, um, and I know that neurotypicals have problems getting their kids to put their shoes on. But this is next level and I I wanted to hear. I wanted to find other people to share that with, and I what I? I wanted to hear other people's stories and what they're going through, because I was feeling pretty isolated. I'll be honest. I felt quite lonely and, rather than just listening to professionals saying here are the strategies, I wanted to listen to other parents going oh my god, it's really hard, isn't it?
Speaker 1:yeah, and sometimes it's not. What is about it being fixed or making it different or changing it. Is it? It's really hard, isn't it? Yeah, and sometimes it's not what is about it being fixed or making it different or changing it. Is it it's about, as you say, just being alongside somebody else that goes this is really hard yeah, absolutely.
Speaker 2:I think that that was the yeah, and I wasn't really getting that from from tam um is my partner at the time. Uh, because tam is neurodivergent so doesn't really reflect on stuff. Uh, because tam has alexithymia, which I don't know if your listeners are familiar with, but it's basically an inability to kind of perceive and interpret your own emotions. So I'm there, so I'm going well, look at this, it's really hard and here's how I feel about it. And Tam didn't know what to do with that. So Tam just heard me moaning and sort of shut it down. I was like, well, you know, I need, I need, I need to share this with someone. Yeah, um. So I started a podcast because why not, let's tell the whole world?
Speaker 2:yeah and we're now, you know, 35 episodes in um, and it's.
Speaker 2:It's just been wonderful for me, like just as a as an outlet and and as a resource for other people. I think it's just been uh, it still feels a bit wanky saying it's a resource. It's not I don't know how else to describe it, but it's because I'm not like I'm not giving you lessons, I'm not an expert, but I have been through a lot with my kids and I'm talking to other people who've been through a lot with their kids and I think just knowing people out there are going through similar stuff is really valid and really important.
Speaker 1:I think it's huge, I think your podcast is really relatable. So people they hear it. It's raw, it's real. People say it how it is. You know there's and I think what does it for me as well as the humor side of it, because actually I think when we're in the trenches and things get bad, sometimes humor can be that.
Speaker 2:That's that saving grace for us yeah, yeah, absolutely, we have to we laugh yeah, I don't think I've ever met one parent of neurodivergent kids who doesn't have this dark humor. But you can't. You can't bust that out on neurotypicals because they don't know how to react, right? Whereas if you're talking to another parent of neurodivergent kids, if you're talking to another parent of neurodivergent kids and you sort of make a slightly off-color joke yeah, you know, you kind of share something, that is, you know you're probably oversharing. Sometimes they know what to do with that, which is just laugh at it and treat it as it is instead of going oh, I'm really sorry yeah, and it just, and it takes it.
Speaker 1:It just helps, I think, take the impact out of it, doesn't it? And I think life can be tough enough as it is and I think sometimes we need to find a way that we can have a laugh, because humor has a huge impact on people's emotional health and well-being and all that kind of stuff. I know I get that from when I listen to your podcast. They make me smile. Um, you know they're funny, the anecdotes that you have, but also the people that come on, and it's sometimes as well it's. That's a relief to hear that, I think yeah, yeah, yeah, I think so, yeah, hopefully so in your parenting.
Speaker 1:I don't like the word career or path Career. I like it yeah but it kind of your experience.
Speaker 2:Learning odyssey.
Speaker 1:Yeah, have you had some? You've talked about some curve balls and how kind of things might have been a bit different along the way. Kind of what's been your biggest learning curve for being on your parenting experience.
Speaker 2:I think. Well, I think in the early days, everyone goes through this process of trying to parent their kids in the way that other people parent their kids.
Speaker 2:You know, if you've got neurodivergent kids, you sort of. There are things that are passed on from other generations. There are things you know there are more up-to-date versions of parenting that you practice and that you try out. And I don't know that you try out and I don't know where it comes from, because I don't think everyone reads parenting books in that way, but it sort of is picked up socially, I think, or maybe by osmosis, um, just by being around neurotypicals and I was trying all of that, yeah, and it I wasn't getting the results that I was expecting and I was getting very, very frustrated by that. Because I would try. I would try parenting in the way that I was parented, which was essentially, you know that my dad was quite a shouty dad and so there was, you know, an element of law. He's just shouted, so I'm going to do exactly what he wants. And I did that. I think you know that I'm not not proud of it, not not proud of it, but you know I tried parenting in that way and actually it just made things worse and it made me feel bad and it dysregulated Jay, um, and you know it was, it was not, it was not working and I sort of got to this crisis point. I think that my relationship was with Jay was at rock bottom because I saw him as naughty, I saw him as defiant and that, you know and I was working really hard at it as well, you know it's like I'm not a lazy parent. I'm really trying to put in the research and the strategies. I'm doing everything I can and it's not working and he's just defiant, he's just naughty and sort of.
Speaker 2:Back to what I was saying about the neurodivergent community. There was a facebook group, a local facebook group, of neurodivergent parents and one day, just exasperated, I put a post on there going just I just don't know what to do with my child who's so defiant. I think he's got odd. So that was, you know, shows how little I knew back in those days. Um saw it as oppositional defiance. Has anyone got anything they can recommend? And straight away. Within two minutes, someone came back and said the explosive child worked for us. Yeah, that's lost screen, isn't it? Yeah, it is.
Speaker 2:I didn't know that at the time it sounded a bit drastic as a measure.
Speaker 1:But yeah yeah.
Speaker 2:So I was like, oh, interesting, okay.
Speaker 2:So I ordered that, yeah, and I read it and it completely changed my perspective of my child's understanding of the world, um, and that was a game changer for me.
Speaker 2:That was the the single biggest thing that that changed for me, because I read it and there's lots in there, um, if you haven't read it, um, and and you find yourself being exasperated by what you perceive a challenging behavior by from your child, read it, um, because it kind of reframes it and you know, the key principles are that all children want to succeed and they're not sort of, they're not upsetting you or defying your expectations just because they're being a dick.
Speaker 2:You know just that, just because they want to, it's that they're not, they're failing to meet your expectations. Yeah, and when you learn that, you can understand that actually it's your expectations that need to change, not the child, because they're not able to do that yet. They might do over time, um, but they're just, you know, they're just doing things in their own pace, at their own time, and they're not ready for that yet, um, and that made a massive difference, because I could see that that jay's behavior was, because when you think that someone's deliberately being defiant. Of course it rubs you up the wrong way, you're like I'm the parent, you're the child.
Speaker 2:This is how it works, and so reading that book was a massive shift for me in terms of I could be a lot more patient, a lot more understanding. And there's this list of have you read the book?
Speaker 1:I'm not a massive reader, so I dig in and out stuff, but yes, I'm not either.
Speaker 2:To be honest, a lot of audio books but, um, but this one I did read and I'm very glad I did, because one of the things it does is it gives you a list of lagging skills these are basically things that your child might not be able to do yet and it asks you to rate them on how how well they're able to to do this, and from like one to five. I think it is something like that.
Speaker 2:Yeah, um, and it's a list of like 30 or 40 different things and I went through it and I sort of rated it and I realized that he was struggling with, like, I would think, 90 95 percent of them wow and I was like whoa, what I perceive that my child is able to do is way off where he is, um, and it really helped me to kind of understand where he is and meet him where he's at, rather than trying to drag him up to where I want him to be. Yeah, I think, um, and and reading that list and going. Neurotypical kids don't have problems with any of this. That was the big thing as well.
Speaker 2:As, like you know, if I gave that to a friend of mine who's got a neurotypical kid, they would be low on pretty much all of them. They might have one or two, yeah that they're not quite there yet, but the vast majority of them are just sort of easy for them. They're picked up by osmosis. They're just picked up, you know, as part of their development, uh, so, yeah, that was. That was a big. A big change for me was reading that book and I think that he also talks, doesn't he?
Speaker 1:uh, ross green is about that kids do well when they can do well. Um, and I've done some posts in the past about flipping that also to parents that parents will do well when they can do well yeah so sometimes we, you know, have a lot of. I mean a bit like you were saying, and it's just kind of I didn't know and we only know what we know.
Speaker 2:Yeah, yeah, absolutely.
Speaker 1:And when we know more, then we can do better. But I like that way of looking at kind of behaviour in particular and behaviour is another one of my areas that I get very excited about and talk lots about but it's almost like as a parent, we that's what we can. Those things we need to learn somewhere, because actually you could probably apply that to a lot of kids. Um, thinking about, you know kids will do well when they can do well. Yes, yeah, yeah. So if they're not doing well, then what's what's going on?
Speaker 2:you have to look deeper than the just the behavior that you see on the surface behavior is communication. Right, yeah, that's the. It's that one that you're there. The way they're behaving is they're communicating something, and typically it's they're communicating.
Speaker 1:I can't do this yeah, yeah, this is too much yeah and then you have to change, change your expectations absolutely, and that's hard, I think, if you don't, if that's not been your experience, that's not been the way that you've been parented, or it's not the way that you come across how to perfectly parent your child, um well, you have this ideal, don't you?
Speaker 2:before you even raise, before your child is even out into the world, you have this roadmap of what you want them to do, whether you admit it or not, yeah everyone, you go right, I want my child to go to university and I want my child to play football or my other child to do ballet or whatever it is, and they're going to do the things that I show them and teach them and I'm going to share my interests with them and they're going to like that and they're going to do it as well, and we'll have quality time together and we're going to sit around a table at meal times and eat. None of this is relevant anymore. Yeah, and you know it's.
Speaker 2:As soon as I understood that this ideal, this parenting ideal that, uh, was there. I probably wasn't. It wasn't maybe conscious, um, but it was certainly the back of my mind of what I wanted my kids to be like and how I wanted my kids to behave. Once I'd learned that actually that's not fair and it's not realistic, that made it a lot easier for me, I think was that an easy thing?
Speaker 1:was that an easy place to come to, mark, do you think? Or did that take a long time?
Speaker 2:oh man, we've all been through absolute torture to get here. So, like all of us, you know it doesn't matter where you are in your journey, nothing's come easy. Um, but I, I and I think it happens in hindsight when you look back and go, oh oh, I've got through that bit, I've got through the really sticky bit. I mean, there are other sticky bits to come, I know that.
Speaker 2:But but for that bit, that where I was really struggling, my relationship with Jay was really struggling, yeah and you know, like I knew, that he had a much better relationship with his mum, um, and I know this because he told me- they do that sometimes to us, don't they? Yeah, I prefer mummy. It's like, okay, thanks, um. But you know I we got through that, um, and now I've got a great relationship with him, because so it works. You know the way that I recalibrated and the way that I reoriented, the way that I parent has got results.
Speaker 1:And that's hard, I think sometimes. I think sometimes people find that hard to make that flip or to do that. We've talked about having a pivot. You know how do I change? This isn't working. I've got to find another way and I think personally that some people find that easier to do than others.
Speaker 2:Um, I think there's probably reasons behind why people find it easier than others I think neurodivergent, I think parents of neurodivergent kids find it easier because we're so used to it, because you have to improvise all the time. You know that you you'll sort of you'll try and set a boundary and then go, oh, that's not working, I'm gonna just remove that boundary, try something different yeah, or you know, get that one yeah, exactly.
Speaker 2:Um, you're very used to it. Rather than going, this is the line in the sand and you don't cross that line, which is how I was parented and I think how a lot of neurotypical kids are parented. Because it works generally if you see the family as a hierarchy and everyone listens to the parents and you know, yeah, but that's not how things work in our households, you're setting yourself up for fail, for failure if you do that, and what kind of when you're thinking back over your when you started to become aware of things were different within your family.
Speaker 1:Did you pick that up very early? Is that kind of when the kids were very, very young, or did that kind of take a little while to to realize?
Speaker 2:I think it's all cumulative. I think for any parent of neurodivergent kids, there's rarely like this moment, this blinding flash of realization that, ah, this is categorical proof. There are just a lot of cumulative things that happen, that they do. You go, oh, that's another one in the questionable pile, and then you know, you look back at it and go, oh yeah, that was obviously a sign of neurodivergency.
Speaker 2:So this is, um, uh, this story that I kind of told in the talk that I did recently about rewriting the rule book for our neurodivergent kids and I talk about, like the the first time I can remember something being different, and it was about 18 months old, maybe two months or two years old, with jay and tam, and I would needed to wear him out a lot. He was, he was just so much energy, this chaos energy that he seemed to have, uh, so we'd take him to a park and run around with him and it was, but it was fun, but we, you know, we were serving a purpose. We wanted to wear him out and at one point we're exhausted, so we sat down and Jay just started walking off and we watched him sort of walking off and I turned to Tam and I went watch this, he's gonna realize we're not with him in a second and he's gonna. He's gonna turn around. He's gonna realize we're not there and he's gonna be really upset and he'll come running back to us. Because that's what neurotypical kids do. I've seen it before. You've seen them, you know when they panic their kid, their parents are not there and they run back to them. And I thought he's gonna do this and he kept walking and we watched him and he kept walking and he was like I don't know what he was intent on getting to, but he was definitely striding towards the horizon with a purpose, um, to the point that we basically had to.
Speaker 2:I shouted his name. He didn't respond. That's another sign, right, he wasn't. Yeah, he wasn't responding to his name. He didn't respond. That's another sign, right, he wasn't responding to his name. I'm shouting his name and eventually we just end up having to get up and run after him. Yeah, and I think you know, in terms of a metaphor for my life with Jay, that was pretty perfect. We're always running after him. He's never coming towards us and it's, you know, that's our role Basically let him lead the way and we'll sort of clean up afterwards and make sure that there aren't any major obstacles in the way so when the diagnosis came in mark for for the kids and maybe for tam as well did that bring a change with it, or was the change happening before that?
Speaker 2:I think that, because diagnosis takes so flipping long, yeah, we already knew that jay was autistic and adhd, yeah, like we were sure of it, um. So really that was just a bit of paper that you could point to and go now can you make some accommodations, um. And also I think I think the real change was that we could tell people because we were reluctant to share our concerns about his neurotype um with anyone while it was undiagnosed rightly or wrongly.
Speaker 1:Where did that come from, mark?
Speaker 2:I think, because you don't want to feel like you're making it up or you don't want to feel like you're, um, I don't know. Yeah, I did, it would, but I just I. I definitely remember they were kind of whispered conversations. We spoke about it a lot behind closed doors, but we didn't divulge anything to anyone close to us until we understood that, um, that he was autistic, um, because I guess you don't know how people are going to react as well. And um, you know, are we making it up? So I'm sure we all have that. Right, it's like all kids, you know, have trouble getting their shoes on and responding to their name. Right, it's like, no, this is different. We're pretty sure this is different, but I'd quite like categorical proof before I tell people yeah, and I think there was something similar in there.
Speaker 1:For me when I was with my son is that well one, even just you talking about your kind of your son walking off into the distance brings back memories from my son that I used to, that I'm going now and he used to go, okay. I'm gonna walk away and I'd be walking away and he'd be going in the opposite direction and, like you say, me suddenly realizing yeah, okay oh, there's only one.
Speaker 1:I'm gonna lose this and me legging it after him. Yeah, but also, but I didn't realize so I he had a big mental health crash and it wasn't until we went and had some support from um, from some counselling, and somebody saying to me do you think he could be autistic? And I went no, do you know what job I do? Yeah, really yeah, completely hadn't seen it, so you knew about autism.
Speaker 1:Yeah, obviously from your ot stuff yeah, working in it, working with lots of families, working with kids, and I didn't spot it that's interesting um, and what somebody was talking to me about afterwards was, I suppose, because I was working with kids, I'd used a lot of the strategies at home, so I was managing, so life at home wasn't too bad, but it was falling apart at school, yeah. I mean, we used to have meltdowns and stuff like that and I didn't kind of. I just kind of thought they were know, he was just having a tricky time.
Speaker 1:I hadn't really attached that to it. It could be he was autistic and having sensory meltdowns and all sorts of stuff. I hadn't made those links and it's really hard and I suppose when we went for the diagnosis I remember thinking I don't want to tell anyone, because what if it's down to me?
Speaker 2:and yeah, I'm sorry, it's just a terrible parent yes, and they're not him yeah they're gonna come back and go.
Speaker 1:No, of course he's not autistic. This must be you. Yeah, and then I. That's where the worry came. For me, I think, is not wanting to tell people. Is that I? If it wasn't, then it had to be me and I had made you don't want to let people know that. Yeah, no, I'm not failing um, and actually it was it what he is autistic, but there was a real worry for me around that yeah, and then there's that moment when you get it confirmed, this diagnosis confirmed of that relief.
Speaker 2:Weirdly it's like, oh, thank god yeah I was right, my instincts were right and everything that I've been kind of understanding and implementing at this point in terms of different parenting strategies and stuff were along the right lines. But at least you know what you're facing. You know.
Speaker 1:Until then you're talking about PDA, I think you had something similar, because I had the initial relief and it came, and I got the diagnosis, we got the piece of paper and it was a relief. But then afterwards for me came immense sadness and yeah, yeah, yeah that. And I wasn't expecting that. I thought I was waiting for this diagnosis because it was going to give us, you know, access to EHCP. It was going to give us access to support at school.
Speaker 1:It's going to give us all these things and it was. It was a gateway to getting to things. We still have to fight for it and we know that, but actually there was a real sadness that I went through afterwards.
Speaker 2:Um, that that caught me yeah, no, I had that as well because, again, when you're expecting it, you're, you're expecting it to come through and you and you, you pretty much know. But, yeah, I remember having a long dark night of the soul of of you know, just sitting there with a whiskey or several.
Speaker 2:Yeah, and just going through that grief, I think, like legitimate grief about you know, your understanding that their life is going to be so much harder yeah, you know, um, and your life is going to be so much harder. It's know, um, and your life is going to be so much harder. It's secondary. You know, I'm more concerned about him and how he finds his way in the world, um, and that you're sort of having to let go of all of these, as I say, these sort of ideals of how they're going to turn out as children. Um, this is all before.
Speaker 2:I understood that it's it's fine, they just do their own thing. You know, like, actually the problem problem is the way that you're perceiving how you're going to control their lives and set down the rails for them to run on. You know they're going to do things in their own way and you know there's a joy to that, but obviously at the time it was yeah, it was really hard.
Speaker 1:Yeah, it's a hard and I don't know whether parents talk about that bit enough, the bit about there is relief and it is about knowing and it is. And you know I wouldn't change him for the world, but there was a sadness in me that I thought, like you said, life is going to be tough.
Speaker 1:Yes, we are in a neurotypical world, whether we like it or not, but there's lots of people out there fighting to change that now and I think awareness is better. Acceptance is coming, but it's slow and we know things are going to be tricky for them. They don't like the school systems, they don't fit into the school systems a lot of the time. So life becomes difficult and I think that's where a lot of that sadness sat for me was realizing actually, okay, if this is what it is, then this potentially is a long-term thing and I've now got to support him through this. And how do we get through this? Um, and that's a tricky bit. That kind of leads me, on mark, to kind of think about, because we've talked before about, you know, families and neurodivergence and the kind of the links there, and I think you and I had a brief conversation before when we did your podcast. Yeah, any thoughts about your neurodivergence?
Speaker 2:Well, people keep trying to out me as neurodivergent, like a lot of my guests have said. I think you're probably neurodivergent. I was like it's weird actually. So, just for clarity, I identify as neurotypical. Yeah, however, that is undiagnosed. Yeah, I am a self-diagnosed neurotypical.
Speaker 2:Um, in the like, I'm sure there might, there may be some traits of ADHD or something like that, but I, you know, I'm looking at the challenges that my kids face or that Tam faces, or that my friends face that have neurodivergency. I've got nowhere near those sort of challenges. So it almost feels wrong for me to to consider it, because I don't feel, like you know, that I, I have those challenges, um, in the way that other people do. Um, the what the episode of the newer shambles I've just recorded is called being a topic being the token neurotypical um, where I talk to another self-diagnosed neurotypical in a neurodivergent household and about the challenges of of being the odd one out in your own home. Yeah, um, because I do. I do feel like the odd one out in my own home and it's quite, it's quite nice in our house that they are so sort of they view their neurodivergency as such a positive thing. Yeah, so I'm almost mocked for not for not having it. I'm a weirdo.
Speaker 1:And I suppose it's like kind of, does it feel like I suppose in Tam gets it, because she can relate to it more than than you kind of maybe feel that you do?
Speaker 2:So I think I think to a degree there's a lot of, there's a lot of Tam seeing traits in in India, for example, like I would not have. So India's the most recent one that's diagnosed autistic and she definitely is uh, she's been masking a lot, I think, at school. But also I have a different connection with India because she's a lot more kind of um, tactile and um I don't know but Tam. But Tam has always seen something in India that has made her go.
Speaker 2:I was like that when I was a girl when I was a child Sorry, don't say girl, because Tam is non-binary when I was a child, that was how I responded in those social situations. So and I was just thinking that India's just maybe a bit shy sometimes with new groups, but Tam recognized something and just kind of kept their eye on it a little bit and made sure that we were sort of on top of it and logging behaviors that seem to be consistent with, you know, autism and and Tam was right, and I wouldn't have, I wouldn't have picked that up. So I think there is definitely a sixth sense there where the neurodivergence can spot other neurodivergence my son talks about that.
Speaker 1:He's got a radar he says he can pick out who he thinks is going through my family.
Speaker 2:I think I'm pretty good at it now as well are you, so maybe that means I am neurodivergent. I'm not. I'm not gonna say anything, mark I'm not gonna say a word.
Speaker 1:Do you think I?
Speaker 2:was. I don't I mean.
Speaker 1:I'm not gonna diagnose on a podcast like I say.
Speaker 2:I just feel like it's um do you know, I think sometimes I feel like I'd be cheating yeah, I was claiming to be part of a group without actually going through any of the tribulations that they're going through.
Speaker 1:I suppose sometimes people think actually I don't even need to know, I just know that I've got these bits about my personality and this is how I am and I'm okay with that and actually it hasn't caused me. I've managed to kind of get through life and it hasn't caused me trauma and stress. And yeah, that's okay.
Speaker 1:And I think probably of our I don't know how old you are, mark, obviously very young but of our generation yeah our generation, we, you know, I'm just diagnosed dyslexic, but very late in my 40s, and I flew under the radar at school because I wasn't dyslexic enough, if that makes sense.
Speaker 1:Yeah, yeah, yeah yeah, um, you know my memories of people being dyslexic at school were them needing to be taken out the classroom. They couldn't read and write. They were very, very disabled by their dyslexia. I was a girl, so I had lots of coping strategies. I had parents that were teachers, so I flew under a radar yeah, because they didn't know what they were looking for either.
Speaker 1:No, and it was, and it's the nuances now I think that are picked up so much better than they were when, when we, when we were young, yeah, because people know so much more about it and people talk so much more about it.
Speaker 2:So obviously, that awareness is there, um, which it wasn't before, and I think that there's way way more neurodivergent people in the world um than we understood before.
Speaker 2:Um, and really it's about whether, I think, in terms of diagnosis, it's, whether you need accommodations or not. Yes, to get a diagnosis, you know, because a lot of people are self-diagnosed and they don't need the bit of paper. They're like you know what? I think? I'm probably autistic and therefore I'm understanding a bit more about my neurotype and the things that I find challenging and the environments that I find overwhelming, you know, and so I will take steps myself to remove myself from that. I don't need to go to this leaving party at work because it's going to be too much for me. So I'll, you know, so I'll do things in my way, um, and it's really about if you, if you understand that there might be neurodivergency at play, then do the research and work out how that fits within your profile and make those accommodations for yourself if you can yeah, you see, my sons that again got the theory on this that actually the um, the neurotypicals are the ones in the minority actually, and they just don't realize it.
Speaker 1:Yet he thinks actually the normal is to be I like it.
Speaker 2:I mean, it's entirely possible, yeah, yeah, there's going to be an uprising, I feel it. You, you're in a virgin uprising. If only executive function was better so they can mobilise.
Speaker 1:Mark, if you could go back kind of to your younger self as a parent, if you got one piece how you could go back, would you give yourself one piece of advice? What would you say to yourself?
Speaker 2:I think it's back to that. Um, it's back to the question about not seeing your child's behavior as defiance. Yeah, I think I think that was.
Speaker 2:You know that was quite a bumpy start to my uh with Jay is seeing him as naughty that start very early, mark, when he was very young yeah, because he didn't, like I say, he didn't respond to his name or he'd be jumping on the sofa and you'd tell him to get down and then he wouldn't get down. So you'd move him and then, you know, leave the room and he'd be back on it again and you see that as naughtiness or defiance or whatever. It is actually. No, it's just a sensory input that he needs right now because he's overwhelmed by something else or you know, um, so it's not seeing that, just questioning that, I think, just just questioning where the behavior is coming from and not just assuming it's because you've birthed the hooligan, which is, I think, where I my starting point yeah um, having said that, I'm not.
Speaker 2:I'm not there now, and I've evolved from that, I've learned from that, and so maybe without that, then I wouldn't be where I am now, I think yeah.
Speaker 1:Yeah, it was a process you kind of almost had to go through. Yeah, we're just coming towards the end, mark, and I thought I'd turn the tables on you a bit because I know you have a definite outcome, you have a definite structure to your podcast which I have experienced and also I've listened to as well, but I wondered whether it might be interesting for people to hear some of that if I asked you some similar questions okay so I've got a couple here, which was can you tell us about your best parenting moment, so a time when you felt like you were winning?
Speaker 1:oh, this is. Has there been one?
Speaker 2:I'm trying to think of like one where you know it's, there's not one single one that I feel like, and I know this sounds really, really bad. This sounds a bit, I can't say that.
Speaker 2:I don't want to say the word wanky too late but every day in our house, at the moment in the home, it feels like I'm winning because we're my kids. They're in a place at home where they are safe and they are regulated and they know what they need to do if they're not regulated. So our home is a really happy home, like everyone laughs and just does silly jokes and can stim and make noise and you know and do whatever they need to do to regulate, and it genuinely feels like a happy home. And to the point that you start to question are they really autistic? Like, is this a thing? And then you, then, when we leave the house, you see the effect of that. You see them in a public place or you see them at school, um, and you realize, no, they, they really struggle in that environment and you get a very different version of them there and uh, so when I see them unmasked in our house, that for me is the huge win, like that's because that's the ultimate winch.
Speaker 1:It almost sounds like, isn't it? Yeah, it is. For me is the huge win Like that's, because that's the ultimate win?
Speaker 2:Yeah, it is for me, certainly, and and Tam as well. We recognise that our house is a safe place for them and and they love it and and they can be their authentic selves, which is great. I I just wish I could transplant that to the outside world. You know, I wish I could make those accommodations everywhere or explain to other people that, you know, just let them, let them do what they do, but obviously I can't control the world. That would be crazy. So I just all I can control is the environment that they grow up in here, and the fact that it's a place that they can unmask is, you know, really important yeah, that sounds amazing.
Speaker 1:And do you know what? You throw me off with that, because I thought I'm sure I know Mark is going to come with a story about this. That will be funny and actually that was really, really to the point and, I think, really important for people to hear that actually there that you are winning and your home is the place that that's happening and that's that must be a really nice place to be in, a good feeling, to have it's the only bit I can control, really yeah yeah, yeah, okay.
Speaker 1:Next one a head in hands moment. Mark one of your, not, maybe one of your. Not your finest moment, just a tv show, not my finest finest moment, I don't know.
Speaker 2:Maybe I remember weird things like that little clips out of movies and stuff there's one that springs to mind where you know we're sort of hardwired to advocate for our kids yes, in in public, so you know when, when you sense judgment from other people yeah um, you will, you know, you'll step in and explain oh, my child's autistic and you're. You know you don't understand their behavior and however you do, it right and but sometimes they are just being assholes that goes for parents too, I think sometimes yeah absolutely um, and I had this moment um, where we were a national trust property.
Speaker 2:This was in the early days where we were kind of we, we thought we'd try that and my kids would just run amok and you know you could see other people generally appalled by just the noise and the. You know they're not being badly behaved, they're just not. You know they're not treating you with the reverence that national trust believe it national trust has got a level, hasn't it?
Speaker 1:yeah?
Speaker 2:yeah, and we are definitely way below that level like they've assumed that we've sneaked in a back entrance or something um come on check their tickets quick yeah, exactly, uh.
Speaker 2:And so otto was way ahead of me and I saw him pick up a stone and he threw it into some bushes, right, he's quite sporty, he likes, you know, throwing stuff. And I saw a woman go over to him and start telling him off, which you know. It's like already, like how dare you tell my child off? And also, you don't understand. You know what you're dealing with here. He's autistic, and you know. So I stride over there and I'm not proud of it and I went, I'll parent my own child. Thank you very much, right, yeah, exactly, and um, and then she turned to me and went he just threw a stone at a duck. Oh, I was like, oh no, oh, all moral high ground all moral high ground.
Speaker 1:How did you backtrack out of that one All?
Speaker 2:moral high ground just evaporated. At that point I was like, oh God, now I look awful and you know she's now going. Well, I can see where he gets it from. Yeah, oh, it was terrible. But obviously I see where it came from, from Otto, right, because Otto has, you know, he's seen a stone, he's picked up a stone. He's like oh, I'm good at throwing, I'm quite good at throwing stuff and hitting stuff with this stone. He sees the duck, it's a moving target. He doesn't make the connection that that duck has feelings and that it's a sentient being. He's just like, oh, it's moving, I'll see if I can get it. Look, I got it. So he, yeah, so basically I just sort of marched Otto away.
Speaker 1:I didn't even apologize to the to the woman.
Speaker 2:I just was just so mortified. Yeah, I was mortified, I just, you know, I found the back entrance to the national trust where you came in.
Speaker 1:We're gonna leave out the way we came.
Speaker 2:Yeah, it was. It was not a fine moment. Sometimes I'm in the wrong as well.
Speaker 1:As parents. It happens, yeah, yeah. Just kind of coming towards the end, mark, and thinking about if there is a parent out there that's struggling at the moment and you've been through it, I'm sure, and I've been through it as well, that we're finding things really tricky at the moment. If you got one piece of advice you'd give them at the moment, what would you say that might help them through it at the moment?
Speaker 2:I would think probably the best piece of advice is to find that neurodivergent parenting community and I think probably every one of your guests says that, but it is the most important because they get it, they understand it. You know, I remember going to a meeting, like a physical meetup of a local neurodivergent parenting community who were amazing. They're called Mascot and they're based in East Sussex and they do a bit West Sussex as well, and we went along to the first event and it was so refreshing to be able to let my kids be my kids and not feel judged by other people and, you know, and almost being able to unmask as a, as a parent, okay, and I don't have to try and control their behavior because people get it. And you know, I look, I remember that we went on because they go on camping trips and stuff as well and it's really nice that kind of thing because, again, everyone understands it.
Speaker 2:And you know, I remember once that some uh, one child came up to our tent and he was just like just unleashing his special interest on me, like really close to my face, and I was totally fine with it and obviously I was talking to him and, you know, engaging with him and his mum came over and she just went. It's so nice that you can do that, because usually people walk away or they think it's weird. It's like I get it, I get it and, and there's that acceptance there. And so often when you're first starting out on this journey, you feel like you're outside of society, outside of civilized society, um, that you're, uh, you're not part of the in crowd. So finding another group of people who get it and who understand where it comes from and don't judge, is hugely important, I think, hugely hugely and that sounds like a really great service, and I think what we can do is put that in the show notes.
Speaker 1:So if people are interested in that, it's in person. That is it, or? Uh, they did they didn't put.
Speaker 2:They do in-person meetups. It's not online predominantly and that's where that's where I first put my posts of you know, I need help with my child, yeah, but they have been incredible, an incredible resource, and there's just so many knowledgeable parents who are so keen because I find that parents of neurodivergent kids want to help other people out. Because we've been through that, those moments of doubt and those moments of like I don't know what to do with this and once you've been through it, you kind of want to go, yeah, we've been through it.
Speaker 1:you kind of want to go, yeah, we've been there you know this, it's okay, it's gonna be okay, yeah, and then you sort of help people through the sticky bit yeah, what was the name of it?
Speaker 2:again, mark they're called mascot, mascot uh yeah, and we'll put those details in yeah, they're amazing, but there are loads of um these kind of online communities, I think, all around the country that do stuff. I've just um the talk that I did recently was at the Bristol Parent Carers Forum, who were a similar, you know, organization that do that sort of thing, and they organized a conference, which is was amazing. So there's there's lots of this out there.
Speaker 1:You just need to tap into your local one and really make make the most of the resources on offer yeah, and that leads me almost seamlessly it's like you've done podcasts before, mark um into just kind of a bit about you and kind of what's going on for you at the moment, because obviously there is the podcast around which you can find on the usual kind of platforms, on all of them, all of the platforms, it's neuro shambles neuro shambles.
Speaker 2:I'm on the socials as well on instagram at neuro shambambles, facebook at Neuro Shambles, threads at Neuro Shambles and TikTok at Neuro Shambles pod. Okay, oh, it's going to be different. I want to take a Neuro Shambles. I don't know who did that.
Speaker 1:Oh terrible. But we'll make sure all of those are in the show notes as well.
Speaker 2:But also kind of just linking in there with the fact that you do go now do talks. Well, I did a, I was invited to do a talk, so I was like, okay, I'll accept that and I'll go. You know, sometimes you just go, oh, I'll say yes, and then I'll have to, I'll have to write a talk, right, um? And so I did. And then the month before the talk, I was like I really need to write a talk now.
Speaker 1:And I did.
Speaker 2:It was like like I enjoyed it so much. It was really, yeah, I was really pleased with how well it was received and it was a really fun one to do because you know, I used to do stand up. So, yeah, you know, just tapping into the little performance, yeah, performance vibe was really nice to be able to do that and sort of you know, to share my story, but do it in a humorous way and uh, so I'm quite keen to do more of that actually, because it was, it was really fun and it went down pretty well.
Speaker 2:So I'm you missed the stand-up mark uh, yeah, in a way I missed the performance. Yeah, but there's a lot of admin around stand-up, like you know. That is unseen, like booking gigs and traveling to gigs, because you see the comedian on stage you don't realize that they've traveled four hours to get there. Then they've got to do the four-hour journey home to get back at two in the morning and then maybe start a day job the next day. It's a lot, um, and you've got to be match fit. You've got to do it, you know, regularly. So I really liked it. I do miss the performance side of things, but maybe that's why neuro shambles is, uh is providing me with so much joy as well, because there is that element of creativity and putting something out there yeah, well, that just leads me to say, mark, thank you ever so much for coming on.
Speaker 1:I really appreciate. It lovely to chat with you today, yeah likewise, I really enjoy this, thank you and obviously we'll put all the um mark's links in the show notes.
Speaker 1:That'll all be there, and the group that he talks about as well on the facebook group, we'll. We'll pop that in the show notes. That'll all be there. And the group that he talks about as well on the Facebook group. We'll pop that in the show notes as well. We'll put the explosive child in there as well. Oh, yes, thank you very much. We'll put that in there as well, so people can find that what we were talking about earlier. Yeah, and thank you very much.
Speaker 1:Lovely to see you, mark, all right thank you so much for hanging out with me today. Whether you were walking the dog, folding laundry or just hiding in the toilet for five minutes peace and there's no judgment here. I'm glad you chose to spend your time with me today. If you're a parent or a carer of a child with additional needs and you're feeling overwhelmed, burnt out or just like you need a bit of backup, I've got you and I'm here to help you find a way through the tricky stuff, like the moments when you feel like you might just run out of steam, so that you can be the parent that you want to be and take care of yourself too.
Speaker 1:If you want to connect, you can find me on all the social media sites Facebook, instagram and LinkedIn where I share more tips, resources and real talk. And hey, if this episode made you laugh out loud or feel a little less alone, why not buy me a coffee? Just click the link in the show notes. It's a small way to show your support and keep this podcast going. Take care of yourself. Today You're doing an amazing job.