Parenting On High Alert: Living with Childhood Epilepsy

What happens when your child's first seizure changes everything? Nicole Bateman, host of "Conversations with a Send Mum" podcast, takes us beyond the stereotypical understanding of epilepsy into a world most people never see. 

"Before my son had his first seizure, when I heard the word epilepsy, I would think of flashing lights and shaking on the floor," Nicole shares, before telling us that there are over 40 different types of seizures, each manifesting in unique ways. Most surprising? Only a very amount of people with epilepsy are triggered by flashing lights – a statistic that challenges everything we think we know about this condition.

Our conversation delves into the unexpected connections between epilepsy, autism, and sensory processing, exploring how a parent's life transforms when living with the constant uncertainty of when the next seizure might occur. Nicole candidly discusses how her nervous system has been "on high alert" for five years, alongside her innovative solutions for helping children understand and regulate their sensory experiences through her work with the Super Sensory Squad and Friendly Send Advisor.

Whether you're supporting a child with epilepsy, work with neurodivergent individuals, or simply want to better understand the hidden complexities of neurological differences, this conversation offers crucial insights, practical strategies, and a deeply human perspective on embracing life's unexpected twists and turns. Join us to expand your understanding of what it means to parent differently while creating a more inclusive world for all children.

You can find Nicole: 

Facebook: https://www.facebook.com/thefriendlysendadvisor

Instagram: https://www.instagram.com/thefriendlysendadvisor/

And Nicole mentions Young Epilepsy as a great support: https://www.youngepilepsy.org.uk/

Chapters

• 0:00 Introduction to Untypical Parent Podcast
• 1:55 Meeting Nicole Bateman
• 4:37 The Journey of Parenting Differently
• 11:10 Understanding Epilepsy Beyond Stereotypes
• 18:59 Autism and Epilepsy Connections
• 27:00 Parental Impact and Self-Care
• 33:04 Creating Inclusive Spaces for Children
• 38:30 Episode Closing and Resources

Transcript

Speaker 1: 0:05

Welcome to the Untypical Parent Podcast, where doing things differently is more than okay. I'm Liz Evans and I am the Untypical OT and I am your host. 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 truly get it, because we were never meant to do this alone. Each week, through a mix of guest interviews and solo episodes, we'll explore a wide range of topics, because every family is unique and there's no one size fits all when it comes to parenting. But before we dive in, if you're enjoying what I share and want to support the podcast, you can buy me a cuppa. You'll find all the links in the show notes. Are you ready? Come join me.

Speaker 1: 0:55

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 humor. Once, 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: 1:54

Today on the podcast, we've got Nicole Bateman, former teacher, mum of two late diagnosed ADHDer and host of Conversations with a Send Mum podcast. Adhd and host of conversations with a send mum podcast is on a mission to make the world a more inclusive space for kids like her son, who is autistic and has epilepsy. Through the friendly send advisor, she supports children, activities, providers and tutors to make their sessions and settings more inclusive through cpd, certificate of training, one-to-one support and downloadable resources. Nicole, thank you ever so much for joining me today on the Untypical Parent podcast. It is lovely to have you with us today. Thank you for having me. So we have Nicole Bateman with us today. Now, nicole, you come with a couple of hats, don't you? And I try and keep on top of all the businesses that you run, on top of being a mum and everything else.

Speaker 2: 2:43

Tell us the uh, you've got two businesses yeah, yeah, I had had multiple, but yes, right now. So my main is the friendly send advisor, helping children's activity providers and tutors and make their sessions more inclusive for our neurodivergent kids and those with other disabilities. Um, and then the super sensory squad uh, eight penguin characters that link to the eight sensory systems to help kids really understand in a playful way, like how to advocate for their sensory needs. Um, and I'm a fellow podcast host, like yourself, of conversations with a send mom too yeah, and we actually bumped into each other, didn't we?

Speaker 1: 3:19

um, at theo perfetus's small business sunday with the penguin Penguin as well, you were there. It would be nice to meet you in person, because often we don't get that chance, do we? I think, when we're podcasters or we're doing a lot online, and it's really nice to meet up with people online and in person, rather, and it was great to meet you and we decided there and then didn't we? That actually we were going to do a podcast on each other's podcasts. Yes, podcast swap yeah. So we have also done the crazy thing today of deciding that we would, in the space that we are meeting, going to do both podcasts. So we'll see what that works out like Double whammy.

Speaker 1: 3:58

Yeah, anything could happen, but we have Nicole come on, and I've invited Nicole on today particularly because I want to talk around something that I know is really, really close to your heart, around epilepsy. We're going to top and tail the podcast with our usual because that's what my listeners will be used to the usual questions, but we're going to have a really good in-depth chat about epilepsy because it's something that I know I would like to know more about and I know is your special area of interest, um, for personal reasons as well as kind of work as well. So we'll kick it off like I always do with all my podcasts. Is Nicole, are you the perfect parent? No way.

Speaker 2: 4:40

I mean, does anyone say yes, you know what?

Speaker 1: 4:43

we have had a couple say yes, but then they laugh hysterically afterwards. So I presume it's sarcasm. I will let them off yeah, absolutely no.

Speaker 2: 4:52

You try your best, don't you, with what you know, and then you adapt and you see what happens. Each day is different, isn't it?

Speaker 1: 5:00

absolutely I think. I think that comes out in nearly all the podcasts. We've done that. Actually, even when you think you've got it pinned with the same kid like two days later it doesn't work again. So it's constantly having to change. We must be the most adaptable people in the whole world. Additional needs parents we just must be.

Speaker 2: 5:19

Yeah, you have, you've. You've got to first of all change from the traditional parenting paradigm that you maybe have brought, been brought up with, first of all, but then it's every day, you know, like this morning, for example. So my son is very anxious at the moment. There's transition coming to new school uh, not new school, new class, um. So therefore his eating is getting more restrictive. He's very sensory sensitive in his mouth and the and all of that textures, um. So this morning, uh, he actually had crisps and breadsticks for for breakfast because, yeah, I was like you just need to. We tried a few different things, like I know it was always spitting out, because I was like, yeah, he's anxious, he's heightened, he's not going to do that. So, therefore, yeah, crisps and breadsticks. And is that a standard breakfast for you know? Or what I thought I'd be giving my kids, uh, for breakfast when before I was a parent? No, but needs must, like he needs food, um good enough yeah yeah, do you think?

Speaker 1: 6:17

have you always had that confidence, nicole? Is that kind of calm that you've kind of developed that as you've grown as a parent, I suppose or learned as a parent?

Speaker 2: 6:27

yeah, no, I didn't didn't always have that confidence for sure. Like it's, it's growing, it's knowing, it's understanding. You know it's trying to. I always I'm very much a people pleaser. I'm sometimes a bit of a like. I like I'm a change maker, so sometimes I don't mind ruffling feathers if I'm standing up for what's right. However, generally I will, you know, try and follow the rules as well. So it's a bit of a mix. And so, therefore, you know, I would be thinking oh, what, what's someone thinking about this or everything like that, whereas now I'm like, no, we've got to do what's best for our kids, and if someone's going to judge me, let them. So it's very different from where I was four years ago after, you know, my son had his first seizure.

Speaker 1: 7:12

Did that just come with time, nicole, or did you have to make a conscious effort to do that, or did you learn it somehow?

Speaker 2: 7:19

I think time does help, because when you learn more about your children and their specific needs, you know that you have to be more flexible, um, and so, therefore, understanding them, understanding why, for example, he's spitting out his food, not just because he does spitting food out is because of the sensory sensitivities that he literally that texture, he is rejecting it and gagging from that. So therefore, before I knew about different sensory things, maybe I would have viewed that differently, whereas now I'm like, no, it's, it's literally, and so trying to then tell others about that. And so now you know I different people get it. Uh, it takes longer for some people to really come round to those ideas of this is why he's doing that. Not because of this, for example, especially with food, but yeah, it's just about advocating as well to others. So therefore, that makes you feel stronger in what you're doing and being able to advocate. So I think time, but also knowing you have to advocate for your child with everyone else, yeah, um, that that helps with that strength and understanding.

Speaker 1: 8:29

Um, there too, and I think it's the confidence, isn't it, that comes with that. Once you get the knowledge, yeah, then comes the confidence, doesn't it? I think? And a lot of the time as additional needs, families, we're learning on the job. You know, I think every parent learns on the job, um, but I think in addition, on ASAP, we end up going off and researching and reading and having to become experts in our own kids, um, and then I think sometimes with that extra knowledge will come the confidence. But it can be really tricky that confidence, especially if you're not naturally a confident person yeah, yeah, absolutely.

Speaker 2: 9:01

It's like, for example, when my son was first at school, um, there was a teacher that decided said, oh, he's being rude, he's putting his hands over his ears. And at that point, because that was very at the start of the journey, you know, however many five years ago, um, and I thought maybe you know he might be autistic, um, but I didn't fully know, or I didn't fully know as much as I know now, um, and I, I was kind of like I asked him why, why were you covering your ears? And he said it was too noisy. And I then relayed that to the teacher the next day to say oh, he was covering his ears because it's too noisy. And she was like no, it wasn't. And now, and I was like, oh, I was a bit scared of like oh, okay.

Speaker 2: 9:46

I was really like intimidated and I didn't say anything, whereas I'm like now I'd be like, right, no, it may not be loud for you, but it was loud for him because he's auditory sensitive and you know, and all of those things.

Speaker 1: 9:58

I'd be like bam, whereas at that point I was like okay, like yeah, and I think it goes back, doesn't it, to your experience of school. You know, I was at school, was well behaved and I didn't cause a problem, and if the teacher said, do something, I was doing it, but I kept my head down and didn't really, you know, cause much of an issue really. And I think I was similar to you that if a teacher was telling me something, I'd go yes, that's fine, okay, bow down, yeah, whereas as you get more confident, you learn and find ways that you can go actually and we don't have to do it in a rude way, we can do it in a, you know, a curious and conversational way, but sometimes that's easier than others with some teachers. But, um, yes, those conversations really help, okay.

Speaker 1: 10:43

So, moving on and thinking about epilepsy, so epilepsy obviously has a big impact on your family. Yeah, and I say that with purpose, as in impact on a whole family, not just on your son, obviously, because it does have a wide reaching impact. Um, can you explain to us and talk to us a bit about epilepsy and maybe how that that kind of shows up in your family, nicole, for you as a family?

Speaker 2: 11:10

Yeah, absolutely. I mean going right back to the, to the start. You know, before my son had his first seizure. When I heard the word epilepsy, I would think of flashing lights, like strobe lighting, and shaking on the floor. That's what the stereotypes that came to mind and I think that's what society. That's often what's shown in films or shown in different things like that, but actually there's 40 different types over 40 different types of seizures.

Speaker 1: 11:39

Wow.

Speaker 2: 11:39

Yeah, and so that shaking, the tonic-clonics that come to mind, that's one type of seizure and so that is quite. You know, I was like oh, wow, because he didn't showcase in shaking, he didn't shake. For his first seizure there was no shaking. So therefore I was like what is going on? It wasn't the typical. He actually went really rigid, which is the tonic part is rigid and the clonic is the shaking is the. The tonic part is rigid and the clonic is the, the shaking, the convulsing. Um, uh, his color drained, he, he was in a bath and, um, you know, he was so rigid on one side, uh, it was really hard to get him out of the bath. Um, he was really shallowly breathing, so I wasn't sure whether he was breathing or not at that point and he was totally out of it. He was just staring, um, and you know, I couldn't get through to him at all. So we put him in the recovery position and we called.

Speaker 2: 12:32

We called an ambulance because it's so scary yeah yeah, yeah, I was like what is happening, because this wasn't what I would have pictured as a seizure. Um, was he very young at this point, nicole? He was four at this point, okay, yeah, um, you know. So, a fun bath time with his sister, like, just turned into like, and that's that's. You know, my nervous system just went, oh, and that's that's the moment that I've been on high alert, you know, for for five years really. Um coming in July and you know, fortunately, after about two or three minutes he came around, but in that moment, like that felt like forever you were like is he breathing, what's happening?

Speaker 2: 13:15

he is literally rigid, his color, drained. He was gray, like you know, and blue lips and all of that. So the oxygen, you know it was, it was low and I was. I thought he was dead, like I literally did, cause he wasn't moving at all and he was so rigid, um, and then he came round, he was like where's mommy, where's daddy? I'm tired, and you know he didn't recognize us. He was so confused, um, so then we, yeah, he went to sleep, um, and then the ambulance came, et cetera, et cetera. But you know, he, we went, we were taken into hospital because if someone has a seizure and it's their first seizure, then you do need to ring 999.

Speaker 2: 13:56

Now, when he has seizures, we don't ring 999 unless it's over five minutes, because five minutes. So timing a seizure is actually one of the most important things that you can do, because if a seizure goes over five minutes, then it's like brain damage territory, it's potential to damage the brain, like you know, more permanently. So therefore, yeah, definitely time it. Whatever you can do Often people have smartwatches do whatever time it, because then if you did ring someone like, you can then say, ok, it lasted four minutes. This is what happened, making sure you're trying to note down exactly what happened the right side was rigid or this side was shaking, or whatever happens in the seizure. And, interestingly, some seizures, you know that you don't lose awareness. So you know my son, he has some seizures like that where he totally is out of it, loses awareness, very confused, doesn't know who we are when he comes around, sometimes very angry because his brain is just, you know it's that it's the electrical current that is, you know, disrupts, you know disrupts the brain, and but sometimes he has seizures where he is fully aware. So there's focal, he has focal epilepsy of the temporal lobe and the temporal lobe with my hyper focus on that, you know that's that's in charge of, that's where the limbic system is, which is like your emotion center. So therefore, some of the things, you know, that confusion, that anger, some of it with temporal lobe is quite trippy, like as in visions of different things and feelings of fear, doom, uh, there's even something called jamais vu, which is like um, where something familiar seems unfamiliar, which is why he's like I want mummy and I'm right there and he doesn't know who I am. He thinks that I'm not mummy and that is really hard because you're like mummy's here, like trying to comfort them after the seizure and he's like I want my mummy, um. So you know there's there's a whole load, depending where um in the brain the seizure kind of. You know that happens.

Speaker 2: 16:03

It will depend on what, the how it showcases, what are the things that you can kind of see, you know, in that and sometimes their motor impacts. So, for example, we call limping seizures. So he is aware sometimes and that his leg will just stop working one of his legs because his epilepsy is focal, which is affecting one part of the brain, whereas generalized epilepsy the electrical currents go across the whole brain and that's if you're shaking. You know tonic-clonics are generalized seizures with the shaking all over the place on both sides of the body. So, yeah, so it can. You know. When he first started limping we were like what's going on and actually you know the epilepsy doctor, so it can you know, when he first started limping we were like what's going on and actually you know the epilepsy doctor, the neurologist you know, said actually yeah, that can impact one side of the brain, he's fully aware, but he starts limping.

Speaker 1: 17:02

And yeah, so there's a whole variety of seizures. If you look back to your kind of before the actual, your first seizure happened, were there warning? Do you get warning signs? Is there things that people can look out for, nicole, that they might be thinking is this, or do you tend to get a seizure? And that's your kind of starting point?

Speaker 2: 17:18

I think, yeah, a seizure can just happen with no prior warning, you know. This is why I say that everyone should understand about seizures, because anyone could have their first seizure at any point. You know the brain development. Often it's quite common around four age four, which is like my son Some people are born and they, you know, they have epilepsy. Teenage years is common because of the different hormone interaction and also in their 60s. So some people go their whole life and then they may have a seizure and get diagnosed with epilepsy in their 60s and do they know what the link is with the 60s?

Speaker 1: 17:53

is it again something to do with hormones? Again?

Speaker 2: 17:54

yeah, well, and the brain shifts, I think okay, generates a bit, I think, and and stuff like that. Yeah, so that's why it's I mean it can happen at any age. But yeah, those are, those are often common kind of first seizure times, um, you know, with with that. So it's it's first. You know, the key things is obviously making sure that they're safe.

Speaker 2: 18:15

There's a number of myths that I like to bust, because you know, people bust them, nicole, what they people say, you know, oh, they can swallow their tongue. That's like physically impossible to swallow your tongue. So therefore, do not ever put anything in anyone's mouth when they're having a seizure. Um, because some people say, or put the spoon in to stop them swallowing their tongue, etc. That's wrong. Like, do not put anything in their mouth. Someone might bite their tongue and and therefore, and there might be, like you know, saliva, extra saliva, etc. That looks like that kind of foaming type thing. In some people, however, they can't swallow their tongue and the blood that is just might be because they might have bitten their tongue at that point. So that is a massive myth and triggers wise. It's not just flashing lights.

Speaker 1: 19:03

Only 3% of people with epilepsy have photosensitive epilepsy, so therefore, impacted by the lights only three percent that's tiny because if you'd asked me I'd have said one of the major things I need to look out for and be really mindful of.

Speaker 2: 19:18

But actually that's really small at three percent yeah yeah, so general triggers I mean for my son, bath triggered at like, and they continue to. And actually, interestingly, we found out more about his type of epilepsy and actually that is something. It's like a reflex seizure to a certain thing, like a bath, and then the reflexes to have that have a seizure and it could be anything. Some people have a reflex to rubbing the towel or doing their nails or things like that, with this specific type of um, you know, linked there. Um, but common ones are stress, anxiety, uh, excitement, illness, you know, all of those things that dysregulate the nervous system.

Speaker 2: 20:02

Um, and my son very much, you know christmas is until this. This year he would have lots of seizures at Christmas and birthday parties. You know he'd have a seizure because he's so excited and that's why this is why, you know, I looked into that emotional and sensory regulation and this Christmas was the first Christmas where he didn't have any seizures, which is like a massive win. And it's because we've been working with the Super Sensory Squad, with the friendly centre advisor, you know, trying to work out what triggers him and then what regulates him. So that's why I mean you, you, you, as a amazing OT, you know this like sensory regulation is so important. It's the key, like so key, and I'm like wow, looking, I can't stop his seizures. Unfortunately, you know drugs aren't working to fully control them. Okay, uh, like in um 30 of people with epilepsy, drugs won't control seizures so therefore they will always have seizures because there's no cure.

Speaker 2: 21:07

But I was like I can impact the triggers and that's why I deep dived into that emotional sensory regulation because like and it's worked, like it's helped him, like, so you know.

Speaker 1: 21:21

It's so amazing, isn't it impact our central nervous system can have on our well-being, our brains are you know everything like that mind, body, brain, can? It's just amazing. It's one of my kind of areas as well that I can go into and get really geeky about, but it's it is. It's brilliant. But talking, I suppose, about epilepsy, and people might be thinking why are we talking about that on the podcast and and thing? But actually nicole and I were chatting before, and what made me be really interested to talk to nicole apart from all the other brilliant things that she does, um is that I'd come across a group and a population that I was working with in a school and had noticed that these children, autistic children, were, um, developing epilepsy in their that kind of puberty type age, and it had been nothing I had been made aware of.

Speaker 1: 22:15

I didn't realize and actually we've checked just before, weren't we that actually there are some links? Yeah, can you tell us a bit about that? Because I suppose we never know, as parents, like you've just said, actually, whether they're neurodivergent or not. Yeah, actually, at any point somebody could develop epilepsy, so it's a really important thing to be aware of. But could you just chat to us a bit about the links nicole, yeah, yeah, absolutely.

Speaker 2: 22:37

I think you know there is a strong like, strong co-occurrence, like, as in in the fact, not that everyone who's autistic will have epilepsy, or everyone, or either way, not at all but um, you know a large, you are more likely to have epilepsy, um, if you are autistic I can't remember the exact percentage compared to like, or ADHD, etc. There's a lot of co-occurrence there and I see a lot of like crossover in the way, because epilepsy is more than just the seizures, you know it's, it's about that altered brain activity. 50% of people with epilepsy have altered brain activity all the time. So you can see if you had like an EEG on which is the wires on the head. So for my son, he has that altered brain activity all the time, not just when he has a seizure 50 of people don't but um, therefore, his processing, his you know different thing, there's a lot of crossover with um, you know the fact that he's autistic and also that he has epilepsy, in the way that his brain processes things and you know, and different things like that, um, and because, yeah, yeah, the different wiring in the brain and things like that, and also with a specific type.

Speaker 2: 23:55

So a lot of you know, epilepsy is actually genetic. Some will be impacted by, for example, head trauma etc. But a lot is um is actually in the genes or an unknown kind of cause. Um, and with with my son is it's linked to the genes and with his specific type of genetic syndrome. There is that co-occurrence of a global development day, global development delay, autism, adhd and epilepsy is very common as co-occurrences.

Speaker 2: 24:32

Yeah, yeah, so he is autistic and has epilepsy. He doesn't have adhd or global development delay, but you know, there's, there's a lot there and with him, the synapses of the brain, which is like, sorry, this is. This is why I'm like this is a hyper focus, but I, you know some people might find it interesting yes, the protein that codes for the synapses, which is like the uh pathways between the neurons in the brain, um, that is altered, the, that gene is altered, that makes the protein which. So it makes total sense to me that wow, okay, so if the synapses, the, you know the different gateways whatever between the, the neurons, um is impacted, then that you know he could have seizures, but also that his brain, you know, with processing certain things, etc. Etc. Can be impacted.

Speaker 1: 25:25

So you know there's so much we don't know about the brain like so much I'm like unico, I can really geek out about the brain and it's one of those things that I'm, you know, I think, oh, I can. You know, everyone else is reading like books, and I'm having a look at how, what about the brain? And all the time I'm thinking I wonder how that works. That must be, and you can track everything back, can't you? Yeah, how amazing. We don't know how well it all does.

Speaker 1: 25:48

Yeah, and all the time we're learning more. We just go with what we we know at the time, at the moment, but they're making so many advances into it. It's fascinating.

Speaker 2: 25:56

Yeah, you know, I think you and I could geek out about that we could and like there's so many like there's, you know, they've probably got about like six genes that they know about that link to epilepsy. Let's say right now, yeah, but when we did genetic testing and things like that, they said, well, just because if we don't find a genetic like it doesn't mean there isn't one because, actually they don't know about so many genes and if they do, code for certain things, so therefore it's just ongoing.

Speaker 2: 26:23

They only know a small percentage. Yeah, um, but that information is like oh, wow, it makes total sense to me. And with the synapses, the protein that, yeah, that codes for those synapses and creates them, is impacted. Then, yeah, it just makes sense. Yeah.

Speaker 1: 26:41

I think what I was also interested in, Nicole and you know possibly you know a lot of what I talk about is looking around and supporting us as parents, and I know not to say that kids don't need the support. We know they need the support. But I often do a lot of talk about how we care for ourselves as parents, because I think that often gets overlooked and missed for us as parents and I just wondered if you could talk to us a bit about how that's, I suppose, impacted you as a parent and how you look after yourself, because I kind of I heard you talk about your nervous system. Yeah, absolutely.

Speaker 2: 27:21

I mean I yeah, it's hard. It's so hard because you just, yeah, from from that first seizure I was, you know, on high alert. My nervous system is dysregulated most of the time, to be honest um, because I'm like, will I get a phone call from school to say pick him up? Will I? You know what's happening there when he's sleeping? I don't feel like safe necessarily, because I'm like what if SUDEP, sudden unexplained death and epilepsy? You know that happens, especially if they have, you know, just regular seizures et cetera. So you're like, ah, so it's trying to.

Speaker 2: 28:04

But the thing is because I'm trying to balance, obviously supporting my son and my daughter as well, because you know, let's not forget about siblings, um, too, because for her she's young, uh, she's younger than him, but she's had to. Well, she's seen most of the seizures because she's always it's me and her with with him, um, and you know she worries, she's anxious about him, she's thinking about him and thinking, oh, when is he going to have an ex-sieger? So her nervous system is also like on high alert. She's so caring and so lovely. She's also a wind up merchant at times, but she just is absolutely. She understands that, she gets it, she helps other kids like in her in her year group, who have epilepsy, who are autistic and everything like that. She supports them because she totally gets it, but it's hard, especially on a little nervous system. So, yeah, I don't have. I'm not the best at looking after myself.

Speaker 2: 29:07

We often aren't Cranial osteopath yeah, cranial osteopathopath that is so good with the nerves and different things like that. Um, I pray a lot. I'm just like I can't. I can't deal with it, I can't control things. I want to be able to control things. When you feel out of control, you feel helpless as a parent. However, um, with epilepsy, because it's so unpredictable, it's constantly changing. You know, some seizures have caused writing regressions, have caused reading regressions. Of course, you know that it can just be such random, like like I said about that limping seizure, it just started one day and you're like where's this come from? And you know, other times he's fully collapsed, his legs have just given way, like both of them, and you're like this is all new, like, and so you've got to be reactive. But I think understanding what regulates me and my own sensory regulation and emotional regulation through running the businesses and trying to help others, that has actually really helped, and also getting a diagnosis myself of ADHD in December.

Speaker 2: 30:05

I now some of the things like I struggle with RSD rejection, sensitivity, dysphoria a lot and I think that then leads me to spiral and it leads my brain to just be like even more on high alert for for other reasons too. And so now, understanding my brain and understanding okay, I'm more likely to you know, more wired for that I, I have lower levels of dopamine and I need those kind of things. All of that understanding, like you said before, knowledge, you know, having that knowledge and understanding of why or you know, things like that I think does help, and it's an ongoing process of trying to make sure that I do find things that help me to regulate, because if you do find it, if I'm dysregulated, then I'm a worse parent, yeah, and less patient yeah, but that's why what you do, I think we're wired, aren't we as parents, to make sure that our kids are safe.

Speaker 1: 31:02

And I think it's like you said, when you're constantly on your high alert because actually there's something that happens for your son that actually you have no control over. You know that's that makes things even more difficult to look after ourselves, because our focus becomes all about our kids. As you know, that's what we're there for as parents. But also it sounds like you know, you do know your brain really well and that's really helped and your nervous system and and knowing how can I regulate myself? And there might be things that you can't control, but there are little bits that actually, if I know myself, I can support myself with this, which then enables me to be more available, calmer about you know and able to support the kids when they need it yeah, um, but not always that easy to do.

Speaker 2: 31:47

No in reality. No, you can know things, but then you don't implement them.

Speaker 1: 31:54

I know that feeling. Well, nicole, you kind of touched a little bit about the things that you do around you, being the Friendly Send Advisor and the Super Sensory Squad. If people want to find you or the things, what do you actually kind of help people do? Because they might be listening to you thinking, actually I'd really to reach out and uh find and know a bit more about nicole. Obviously we'll put some stuff in the show notes, I'll put some stuff in there. It'd be really great actually as well, if you could give us some links about um, epilepsy and where people could find more information. We could put some links there for people if they're looking for that.

Speaker 1: 32:29

But on a more kind of general basis and what you do as a job, yeah um, do you want to kind of just to give us a quick synopsis of what you do and then just where people can find you and what you're doing at the moment, if you've got anything new coming up?

Speaker 2: 32:41

obviously we've got another podcast, but anything around that you've got going on at the moment yeah, so I mean everything I do is the stems from the core mission of trying to make the world a more inclusive space for kids like my son, like you know, I think many of us, like you, liz, like you know, we're doing these things because we want to make it better for our kids and other families and all of those things.

Speaker 2: 33:03

So we share that, you know, share that mission, yeah. And so then you look at it and you're like, right, there's so many different ways you could go about that and that's why it's good to link up with other people, because you can't do everything but you can like piece different things together. So with the Friendly Send Advisor, I decided actually go for the children's activity sector and tutors. And because sometimes our kids miss out, I chatted with another. I did another podcast with Neuro Shambles as well, I chatted with another.

Speaker 1: 33:31

I did another podcast swap with NeuroShambles as well.

Speaker 2: 33:32

We talked about hobbies and we talked about how it's tricky sometimes to be able to have places where you feel like your child is safe, like, and that people understand their brain and understand the nuances and all of those things.

Speaker 2: 33:46

And so I was like right, I can change that, I can go and offer training and things like that. So yeah, I do like online and live training for different children's activity providers and franchises. You know I've worked with drama schools I've worked with um. You know holiday clubs I've worked with um. You know toddler classes I've worked, you know, with French and Spanish tutors like a whole variety over the last it's so important, isn't it?

Speaker 1: 34:10

because even when I think from my son's point of view is that we never used them. I never used any kind of I mean he's not in school now, but even when he was in school we never used the activity stuff because he couldn't access them. They just they were so stressful and there was part of me as well that I didn't feel he was safe in those environments or that they understood, so he just stayed at home. So he's never had those opportunities to go and mix and try new activities.

Speaker 2: 34:36

So for me, when I hear you talk about that, I just think, oh, how amazing that it just makes things more accessible for our kids yeah, yeah, and that's that's the yeah, that's the whole point and that's the reason you know, yeah, so yeah, just, you know, cpd certified, a training program that's currently running, that I've got like 12 amazing activity providers that will then get my seal of approval for I said to them look, you get this, and I'm like it means that I trust you with my son, which is like a massive thing, because I know that we've got all the background of, we've got the SEND law and stuff like that. But we've got all the background of we've got the send law and stuff like that, but we've got the regulation emotional regulation, sensory regulation we've got you know. You know talking about the seeking dopamine, looking at behavior and being curious about it, rather than like you know all of those different things linking to learning differences, like communication differences.

Speaker 2: 35:28

You know adhd or some. You know a whole variety in there six weeks, um, so that is, you know if you've got, if you're listening and you you know some. Any activity providers, then do, do you send them to the friendly send advisor?

Speaker 2: 35:42

because, uh, we want to make sure that all our kids can access anything that they want to access, so that is important yeah, that's's the big mission there and with the Super Sensory Squad you know, is providing resources for parents to use with their kids to get their kids to love the penguins link to those, you know, like flex is linking to proprioception. But we have simple questions like what can you push, pull and carry?

Speaker 2: 36:09

Yeah, it's like helpful to be like oh, I'm using my muscles, like flex is what my son. He loves proprioception. He loves that there's deep hugs. He loves weighted blankets. He loves pushing, pulling, carrying everything, you know, that really regulates him, and so it's trying to give these tools to kids, and I've seen it worked with my son, like you know is so. Therefore, and my daughter, my daughter, absolutely loves them. Uh too, but it's, you know, it's just thinking how can we help our kids with tools that are playful, rather than like things that maybe, oh, you have to do this, or actually no let's be like this penguin it's all about pulling the kids in, isn't it?

Speaker 1: 36:47

if we we try and do to the kids, it's never going to work and actually those kids grow up to be adults. Yeah, and they've got to learn about their central nervous system and how to support themselves, and it's not just a oh. If we do it when they're little, it won't be a problem in the future for them. They're going to have to learn about their central nervous system. In fact, I think there's quite a lot of adults out there they could do with learning about their central nervous systems it's been game-changing for me, like it's the last five years.

Speaker 1: 37:11

Yeah, yeah, I wouldn't know what I know.

Speaker 2: 37:14

If it wasn't for that first seizure, you know like, as in this journey, I wouldn't have known.

Speaker 1: 37:20

I wish I knew now, when I was teaching so hindsight is a wonderful thing, I know, yeah yeah, like I would have been such a better teacher you know, but you know now and now, look at the amazing things that you're sharing and helping other people to know more about it and shouting about it and letting people know. So I think what we will make sure we do is we'll put all Nicole's contact details and about the Friendly 10 Advisor and the Super Sensory Squad and more information you can find out about that. Put that in the show notes and where we can find you. Links. Links wise as well, when people can link up with you if they want to yeah, absolutely, and young epilepsy is a good one for epilepsy, a good charity, brilliant we'll put that link.

Speaker 1: 37:59

yeah, yeah, we'll put that link there as well for people to find out some more information. So it just leaves me to say thank you ever so much for coming on, nicole. I really appreciate it. It's been great to talk to you about, especially about about the epilepsy. I've found out loads of stuff today that I didn't know about, and it's good to know about these things. So thank you for doing that and thank you for being open and honest about it, because I do ask personal questions about it and you know, I think it's important to ask those questions and that parents don't feel what they're feeling is wrong or shameful, or that they're the only ones. They are not Even us, as you know professionals doing the jobs that we do.

Speaker 2: 38:34

We're still finding a way through it. Yeah, we still learn every day yeah, absolutely so.

Speaker 1: 38:37

Thank you ever so much for coming on. Thank you so much for having me. Thanks, nicole. Thank you for listening and choosing to spend your time with me today. If you enjoyed this episode, please do share it with a friend, who might just feel reassured to know that they aren't on their own. And if you've got a moment, a quick rating or review helps others to find the podcast too. If you want to stay in the loop with the podcast updates and all things Untypical OT, just drop me an email and I'd be really happy to add you to the list. Take care and I'll see you soon.