S4: E1: Nicole Bateman chats end of term transitions, parental burnout and epilepsy

Welcome back to Conversations with a SEND Mum and to the start of Season 4. In this solo episode, host Nicole Bateman sets the tone for the season ahead with an honest, heartfelt look at what’s really going on behind the scenes as a parent of a neurodivergent child.

Nicole shares her personal reflections on:

• The quiet exhaustion of parental burnout and why it needs more space in the conversation
• The emotional impact of seizures, not just on the child, but on the whole family
• That limbo feeling of school ending and summer beginning and how to make transitions feel safer and smoother for our children

You’ll also get a peek at what’s coming up in Season 4: incredible guests, lived experience, practical tips, and honest conversations that help you feel less alone and more equipped.

Whether you’re navigating epilepsy, anxiety, school transitions, or just trying to get through the week this episode is for you.

Follow Nicole on www.instagram.com/conversationswithasendmum for exclusive peeks to weekly episodes. Please do send feedback and rate this podcast to help it reach those who would benefit.

Check out our Season 3 and 4 sponsor Rachel's 3 R's Subscription Box: Dedicated to helping SEND mums feel calmer and more relaxed by providing a box of products and online support for self-care. Follow on www.instagram.com/rachelsthreerssubscriptionbox and use the code NICOLE10 for 10% off your first order at https://rachel-s-three-r-s.subbly.me/

Check out our Season 1 and 2 sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

2:09

Hello and welcome to Conversations With As Send Mom Podcast, season four, season four. I'm so excited because we have got some great guests coming up this season and we have our amazing sponsor who sponsored our season three is also, it's sponsoring season four. Thank you. Rachel's three Rs subscription box perfect for some little relaxation and you can hear more about it in the intro. So what is season four going to bring? We are looking at some different areas. There will also be some solo episodes from me and we will be putting it out there fortnightly. So for a little bit of time we have paused on the new episodes of the podcast, and that is because as AEM parent, as someone who runs a couple of businesses and hosts a podcast, it. Got a bit too much. I was nearing burnout and so therefore something needed to give. What has been amazing is that I have seen people listen to loads of the older episodes while we haven't been putting out any new ones, and this is why. I'm committing to putting new episodes out fortnightly rather than weekly, because as some parents, we've gotta think about what is actually manageable for us. We need to sometimes let go of the expectations of others, which is really hard when you've got. So much high expectations of yourself and that you don't wanna let anyone down and all of those things. But we've gotta actually think about what is best for our own mental health so that we can then be present and be available for our family. Because our family needs us, our family, and our kids need us to be able to advocate for them effectively. They need us to be on top of our game. So therefore, for. That wasn't happening, which is why I paused, and this is why we're gonna go for a fortnightly episode going forward today. I wanted to just share what has been on my mind for the last maybe month. There was something I shared the real raw realities of the aftermath of our child having a seizure, so I wanted to share that because that resonated with a lot of people. It's those emotions, it's those things that. Sometimes people don't share and sometimes people don't talk about. And I also wanna talk about the end of term and preparation for summer, because I don't know about you. You're probably in the thick of it right now. School is nearly ending and it's hard and it's hot. I am recording this one week before it comes out. So at this point it is hot. Who knows what it's gonna be like when this actually comes out, but it's just thinking about what can we do because. We are important as parents, and if we are dysregulated, if we are burnt out, then we can't support our kids in the best way. So that is something that is so important and something that we need to be thinking about going forward. I. So first of all, sharing, sharing those thoughts, sharing those emotions regarding seizures. So any of you here who have kids, who have medical needs and all of those different things, you will experience a variety of different emotions. And for me, I wanted to share. The aftermath of a seizure. So last Friday, my son had a seizure and we actually had gone the longest time without an impaired awareness seizure. So he has focal epilepsy and he has impaired awareness, seizures, and then also focal awareness seizures. He has still been having some focal awareness seizures within the last eight weeks, but he had gone eight weeks. Between ones where he loses awareness and those ones have an even bigger impact on him. The focal awareness seizures are not nice because he's totally aware when they happen and he loses motor function of one of his legs, and so therefore he's limping. We call them his limping seizures, and they are not nice for him because he knows. What's going on now? We, he's had it for a few years, these types of seizures, and he knows now we say to him, look, you are having one of your Olympic seizures. It will last for a couple of minutes. Let's sit down and then we'll be able to, you know, to, to continue. He actually had one yesterday because it was so hot and that impact of. Heat of anxiety, of excitement, of change, of all of those different things definitely play an impact, but after one of the impaired awareness seizures, because he is totally out of it, he doesn't remember what happens when he comes out of the seizure. He is so confused. He has something called xme vu, which is where things that are familiar, seem unfamiliar, and that. Really hard as a parent and as a sibling as well. For example, for my daughter, because he is like, I want mommy. I want mommy. And I'm like, I'm right here. And he is like, no, I want mommy. Where's mommy? He literally doesn't recognize who I am at all, and it's so hard when you feel so helpless you can't stop the seizure that when he comes out of the seizure, you just want him to know that he's safe and that you are there, but he doesn't recognize you. He also has no idea what time it is. He is. He often asks, what's the time? Is it bedtime? I'm tired, and, and that's. That's that he sometimes gets quite agitated and scared. And so you know when you've got, especially with my daughter there as well, who wants to make sure her brother is okay, but then he again, doesn't recognize who she is and wants her out and that can really hurt her. Feelings. Even though actually, you know, he has no idea what he's saying at that point. He's totally out of it. He's so confused. He doesn't know what has just happened. But for her as well, navigating her emotions as well as my own, and then making sure that my son is safe and ready for then sleeping, so he then he then sleeps, but. At that point, I then obviously need to go and talk to his sister, but I want to be making sure that I'm watching my son because the aftermath, you think, right? Is he breathing okay? What's happening? Is he gonna have another one? All of those thoughts go through your head and it can be quite overwhelming and scary, but. We have to, as parents, regulate ourselves and then go and support his sister with that. Once he's asleep, it's then goes on to supporting his sister. And his sister, you know, is only six and she's been experiencing this most of her life. And when you've got a younger one and they're not sure what's going on, she now has really good understanding of the brain of what happens of, how we reiterate. That he doesn't know what he's saying. Like when he says, go away or things like that, he just, you know, it's, it's not him, it's him being super confused because his brain has just had, had a seizure. So she bless her. She then, we pray for him and we talk through different things, but then once she's asleep, then you're like, okay, I often spend the evening. Watching him because I can feel myself go back onto that high alert. I can literally feel my, my body just tensing. And sometimes my husband's like, well, why, you know, this is, this is just kind of life as in this is something that we just need to deal with. But every single time he has one of his impaired awareness, seizures and the experiences that confusion and that, you know, not knowing anything about what's going on, I, I can't help but go back to that. That moment, that high alert state, that watching him like a hawk, that feelings of helplessness, I can't stop this. All of those feelings come back and even though, yeah, it's, it's understandable, like it's predictable. That for example, you know, that was the heat, the change of teacher, the excitement of birthday, all of those things that impact his nervous system, which trigger the seizures for him. It's predictable. And I would've thought that that week he would've had a seizure. It still doesn't make it any better when it actually happens. And obviously we are in a, we are in a much better place than we were, you know, five years ago. Five years ago. In July is when he started having seizures. And for a good couple of years, they were super, super regular. So going eight weeks without an impaired awareness, seizure is a massive, massive win. And again, I you talk. Talk to yourself, inner mind and think, wow, I am so grateful and I am, I'm thankful to God that, that he has gone that long because there are people who have multiple seizures every single day, but. I also know that 70% of people with epilepsy are able to gain seizure control, which is more than a year being seizure free and that, and you want that for your child. You want that, you want them to be able to go not just eight weeks, you want'em to be able to go a year, two years, three years, all of those things. So it's that inner tussle because you know that there are other parents out there that are in a worse position than you. But then you also know it's, it's important for you to feel those feelings though, of what's happening with your child. And that's in anything, because it's, you try and convince yourself. You try and tell yourself like all of the different things, but it's okay to feel how you're feeling. And that's definitely something that I have learned. So. On those evenings when he does have a seizure, that is what I need to do. I need to sit there, I need to watch him, I need to do that because I, I just need to do that. I can't really fully explain why, but my nervous system is just on that high alert and I am that mother bear just watching my cup and. Yeah, that's, that's maybe just instinct as well, but it's sharing, it's, it's us being able to share these feelings and being able to be vulnerable and be truthful. Because you might see lots of different things around and you may think, oh, then that person's doing so well, that person's coping so well. But underneath, sometimes there is that person sitting there watching their child sleep because they're worried that they're gonna have another seizure or, you know, whatever it is. And just making sure they're okay. I just wanted to unpick that and share that a little bit because I know that when I posted about it, there were lots of people who felt very similar and others who just got that understanding of the actual emotional impact of, of some of these things on parents. So now switching slightly to thinking about. Okay, we've got last few weeks of school. If, if your child is at school, that's then gonna be transitioning to summer holidays. And in that there are so many things. So some of the most, some of the helpful things that we've been doing, I just wanted to also share. Fortunately, this year he has some really great teachers. So we are super thankful because that's not a given. Some years that has not been the case and we have been in not a great, position. But this year they are understanding and they take on what I suggest or say and are really, really helpful. So I'm super grateful for that. At home, we are making sure that we are trying to lower those demands because right now. There is a whole mix of things. Last weekend my son was in tears because he did not want to leave this year because he loves his teachers and they are so good and so is that uncertainty and worry is like, oh, are we leaving now? Is this person leaving now? All of those things, so they are on edge. Their nervous system probably doesn't feel safe right now in. In, in school, some that is a standard everyday thing, but for some they might have been able to build up that relationship and feel a bit safe. But now, right now, because of so much change, every example last week there was something different every single day for my son, every single day. And you're like, wow. The routine if, if kids love that routine for some kids it's super fun. Like my daughter absolutely loves it. She's so excited about all of these different things because her brain loves those novel things. She seeks that dopamine. She's getting that dopamine and it's super great for her. But for my son. It's really not great because he really feels safe with those routines and knowing what's happening. So at home we are making sure that we are getting all the information we can. We are prepping him, we have visuals to help as well. And we do that going into countdown basically. Again, for some kids this might make them feel more anxious, counting down and crossing down, but for others it make makes them feel more in control. So therefore, again, it is all about your individual child and thinking about. What works for them? The separation from parent to school, for example. I know that for some friends that is really tricky at the moment. And again, it's, it's because that sense of safety is, is not necessarily there because things are changing. The normal routine is, is different. It's hard, it's hot. Yesterday in the, in the communication book, it was said that. And I forgot to drink. Didn't really, remember to drink. Whereas usually he's really great at drinking water, but. He, he couldn't, he couldn't really remember that that's what he needed to do. And that's probably because it was so hard that his interception, that that inner body, you know, telling you if you're hungry, thirsty, hot, tired, all of those different things the signals weren't working properly because it's, you know, with the heat that's, it's hard. So therefore a lot of kids may be not. Hearing those inner signals of their body saying like, I'm hungry, I'm thirsty. You need to drink, I need the toilet. All of those different things. And that seems to be what happened yesterday. And my son ended up being dizzy, feeling dizzy and all of those different things because you know, even though very grateful, he did get reminded to drink, he didn't drink as much as he usually would on a school day. So it. All of those things like that, it's often not just one thing, it's all of the different contributing factors, the change of routine, the uncertainty of who the next teacher is, the transition into being at home for six weeks, the heat, all of those different things can contribute and so therefore, it's important to. Even more important to make sure that the home is that safe space with lower demands and increased regulation. Making sure that they understand, you know what, and you understand what they are seeking to help them regulate. You know? That's why I. For us, understanding not only emotional regulation, but also solitary regulation and what things are helpful. So my, my son for example, he seeks a lot of proprioceptive input, so he loves all those big squeezes weighted blankets, pushing, pulling, carrying, all of those things. So we make sure that we have that afterwards. Although he's so exhausted right now from. Coming back from school. So he needs that rest period as well. He needs a snack. He needs to eat and drink. He needs to then be able to have that weighted blanket. He needs to be able to have those big squeezes. For my daughter, she seeks a lot of. Movement, so vestibular input. So therefore, you know, she goes on the little trat outside after having a snack and a drink, the first thing we do is, is have that snack and drink because we need to, especially with this heat, we need to cool down and pause and, and things like that. But then we think, okay, what are some of the regulating activities? My son also like me likes all the fluffy things. And obviously in the summer it's really tricky, but even just he sometimes. Comes and to my fluffy and just kind of strokes his face against it because that's comforting, that is safe, that that reminds him of mummy. That's, you know, all of those things. It smells of mummy and those different things to just reconnect and reregulate after something that, you know, has such a massive change at the moment with all the different activities, sports days, all of those different things. So at home, what we can be doing is proactively. Showing them, telling them what's coming up, if the school communicate that with us, and then also increasing that regulation chance and decreasing the demands. Because for me, I am, I'm someone who may be less on the kind of, they need to do their homework ex. Because I want to make sure that they're regulated after the school day first, because that is the most important thing. Otherwise, they won't be able to engage in anything else. So that is, that is what I do and that's the focus of my afterschool time with my kids is regulation and that connection back, making sure they have that safe space and they know that I'm there. After a potentially stressful day. So hopefully some of those things will be useful for you going through this transition right now, and then into summer. I will pop back at some point and share some summer tips and different things like that, but you'll also have some amazing guests coming up. Today you have this episode and another episode out and then in two weeks time and fort lightly. From there you will get the new episodes of Season four of Conversations with Ascend Mum. Make sure I always love to hear from you, so make sure you connect on Instagram Conversations with As Send mum and you can email hello@nicolebateman.co.uk as well. If you have any questions or requests. Also tell me what topics you would love me to talk about or chat with people about, because it's about what's gonna be helpful for you. So I hope you have a good couple of weeks and a new episode will be out in a fortnight. Yeah. I wish you well and have a lovely few weeks.