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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 neurodivergent 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.
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The Untypical Parent™ Podcast
Parenting with Chronic Illness: Finding Your Path
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Chronic illness doesn't come with a parenting manual. That's why this conversation with Rebecca (the Chronically Resilient OT) feels like a breath of fresh air for anyone trying to raise children while managing their own health challenges.
"Perfect is the enemy of done," Rebecca reminds us, cutting straight through the guilt that plagues so many parents with chronic conditions. Drawing from her unique perspective as both an occupational therapist and someone living with chronic illness and neurodivergence, she offers practical wisdom that goes beyond typical advice. Rather than focusing on what parents "should" do, she helps reframe priorities around what's genuinely meaningful.
What happens when your sensory needs clash with your child's? How do you explain to a four-year-old why they can't jump on your back? When should you tell children about your illness, and how? Rebecca tackles these questions with compassion and clarity, emphasising that talking openly about disability (in age-appropriate ways) creates safety for children who intuitively sense when something's wrong.
The practical strategies she shares—from energy accounting to different types of rest—offer a roadmap for parents struggling to balance their health needs with family responsibilities. Perhaps most powerful is her permission to outsource what you can and adapt expectations: "There's no moral failure in outsourcing. It doesn't mean you're a bad person or a bad parent if you're not able to do the grocery shopping or the laundry or all of the cooking."
This conversation will leave you with a transformative realisation: what your children will remember isn't the three loads of unfolding laundry—it's the five minutes spent working on a puzzle together, the board game played in pyjamas, the authentic connection that happens when we let go of perfection and embrace the reality of our limitations.
You can find Rebecca on:
Facebook: https://www.facebook.com/thechronicallyresilientot
Website: https://www.chronicresilienceot.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
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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 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:Our guest today is Rebecca, otherwise known as the Chronically Resilient OT. They are a neurodivergent and chronically ill occupational therapist based in rural New Zealand. She combines her clinical knowledge and lived experience to support neurodivergent and chronically ill clients in private practice and is passionate about educating other professionals to improve care for a larger number of people. Rebecca, thank you ever so much for joining us on the podcast today. We have got Rebecca with us. She's actually from on the other side of the world. I've just said good morning to her, but it's actually good evening to you. You are from New Zealand, but currently you are in Adelaide in Australia. Yes, so you have squeezed us into your time away. So you have squeezed us into your time away.
Speaker 2:I don't know time away. It's a mostly work trip doing some trainings and presenting at an occupational therapy conference.
Speaker 1:Cool, okay. Well, you've squeezed us into your time away in Australia and it is really nice. I was thinking about it actually before we came on. I think you are the first other OT I've had on I don't think I've had other OTs, so you are the first other OT I've had on. I don't think I've had any other OTs, so you're the first other OT. So I'm quite excited to have another OT on to chat to, and I'd probably say an untypical OT as well, another untypical OT doing things slightly differently, which again makes me feel quite excited. So we're going to have a chat with Rebecca today and your online presence so you are online and you're known as the chronically resilient ot am okay, right. I start all my podcasts, rebecca, with a question around parents and about being a perfect parent, and what I want to ask you is have you ever met a perfect parent?
Speaker 2:No, I think you know, like you know, I'm not a parent myself, but I am a perfectionist and I'm like that is not a helpful thing to be most of the time. And the parents I've worked with so before I was an OT, I worked in childcare centres, I did nannying and babysitting and worked as a disability support worker Like I've worked with a lot of parents and when we try for perfect with anything, we are setting ourselves up for stress and failure. Essentially, that's not to say you don't try and do a good job, but going for perfect. What do I often say? Perfect is the enemy of done. Yeah, I haven't heard that before.
Speaker 2:Yeah, I think I kind of made it up it's like perfect is the enemy of good, but I'm like no, perfect is the enemy of done like.
Speaker 1:If we're going for perfect, we're not actually going to get anything done and we're going to be very stressed about everything that we're doing at all times, and it's not a great way to live a life yeah, and in the work that you've done with parents, do you kind of get this sense that there is this sense of needing to be perfect, of this kind of I need to do more, I'm not doing enough and somehow I've let my kids down. I should do more, be you know, be more. In some way do you kind of hear that a lot?
Speaker 2:I do and it and it's really hard because I work with the.
Speaker 2:The parents I do work with are usually neurodivergent and chronically ill yeah and so with that combo of experiences and disability it, you know, there are very real barriers to doing what they might have thought parenting was going to look like, or to do the things that they see other people doing. And it is a conversation that comes up a lot in terms of am I doing what is a good enough job? Am I failing my kid because I can't take them to the park, or whatever? You know, that's just. You know that's a random example, but there's, there's lots of extra layers in being a disabled parent.
Speaker 1:That comes up in my work a lot yeah and that probably leads me into the next bit, actually, because Rebecca is to kind of can you tell us a bit about what it is that you do? So you've got your title of the chronically resilient, resilient OT, but what does that actually mean? What do you? What do you? What's the work that you're doing?
Speaker 2:yeah, so I'm chronically ill myself, and by that. So when I say chronic illness, that is a really big umbrella term for things like chronic fatigue syndrome, fibromyalgia, hypermobility conditions, any chronic illness really. They're different to what people sometimes call a chronic disease, which is more your diabetes and heart disease. So what I'm talking more about is like invisible in air quotes, illnesses that are often really highly misunderstood and that may not somebody may not appear disabled on the outside, but they're dealing with a lot in their day to day lives and so, yeah, so that's some of my lived experience.
Speaker 2:I'm also neurodivergent and so in my own life and being an occupational therapist, it's like so okay, how how do I work, what type of people do I want to work with and how do I use my lived experience to support other people, and so, yeah, so I work with adults. I only work with adults. People reach out often if I will work with their kids and I'm like no, but I'll work with you. So I only work with adults, and the way I do occupational therapy probably looks quite different to other people. I don't do wheelchair prescription and home modifications.
Speaker 2:I do a lot of values and interests and what is a meaningful life and how are you pacing your energy over the week? How are you kind of making sure that you're not overdoing it one day, so that you can actually do the things that you need to do over the week? What is important to you? How do you prioritize that? I do a lot with sensory processing as well and sensory modulation, so how can we use sensory inputs to calm down or wake up? Yeah, and support a lot of like executive functioning, so people's planning and organizing and those kinds of things. And, yeah, you know the parents I work with, it's like they're really struggling with sensory processing and executive functioning and working as well as parenting and balancing all the you know the, the appointment needs that they might have to manage their disability as well as being a parent, and some of them are doing it alone as well. They're single parents. That's, you know, that's a whole nother layer yeah, so yeah and what I do.
Speaker 2:it'll look different for every person because that's everyone's a bit different, but generally, yeah, it really comes back to what is important to the person what are they not doing, what do they want to be doing, and how do we get them doing more of what they want to be doing?
Speaker 1:And that's so important, isn't it? And I think, a bit like you as well, I've got chronic illnesses as well, diagnosed. I'm hypermobile, I've got inflammatory arthritis, an inflammatory arthritis. So you know, I've got other things, and I think I often see this link between parents that have been through probably very stressful times with their kids. Um, and not often I don't often mean that the kids are causing them stress, it's often the systems they're within causing them a lot of stress. And I think, like for me, that illness probably there's a predisposition for it or whatever but that came out much more following all that. That kind of seemed to trigger it for me, um and I hear a lot of parents talk about that that actually they became unwell, um, or this kind of chronic illness developed in amongst the stress around caring for their child in a world that doesn't really always fit them and I wonder kind of do you see that a lot with the kind of the people that you're working with is that.
Speaker 1:Where does that come from? Is it? Is it stress related?
Speaker 2:I think I mean stress is absolutely a factor, and often I also see people with trauma histories in their own childhoods as well. That's another big factor and, um, you know, the hormonal shifts that happen during pregnancy and after birth and after stopping breastfeeding can also trigger a cascade of issues, like you know, when our elastin changes when you're pregnant and yeah your hips dislocate or whatever.
Speaker 2:You know like there's lots of physical changes that happen in the body that may then something may have been dormant or it may have been asymptomatic, so not showing symptoms, and then, yeah, with the additional stress, with hormonal changes, with maybe not being able to look after yourself you know, lack of sleep, eating differently depending on your support networks as well, maybe you are having to continually push through and you're not able to support yourself. In the same way, you're not maybe engaging in the occupations you would usually engage in because you've shifted into a parenting role. So I think, yes, stress is a factor and it's like I look at you know, as an occupational therapist yourself. We're looking at the person, their environment and what they're doing.
Speaker 2:And all the different factors that might be contributing to the development of a chronic illness, or an understanding that we've always had a chronic illness, like being hypermobile. You kind of you start with that one. Yeah, yeah, might not become apparent until later in life, you know. So it can. There can be so many different factors in there and often we're not focusing on the cause. It's it. It sometimes that's a way to use up a lot of brain space. That's not always productive.
Speaker 2:So, like as an autistic person, knowing the why is quite important to me and at the same time, if I focus too much on the why or the name, I lose sight of the trying to make the changes and do the things, and and, and, and, and and move forward. So, yeah, often the conversation is like okay, so you, you're dealing with this. This is huge, this is super stressful. What other supports have you? Have you got? What can we get into place? What can we outsource?
Speaker 2:That's often a big one for chronically ill parents is do they have the means to get a cleaner or help with cooking or whatever it might be to reduce their load, even if it's just a little bit? Are their grandparents close by? And I know there's so much privilege involved in being able to pay for those supports or having access to that kind of family support, and if it's there, how can we use it? How can we make use of it? How can it support you so that you can focus on taking your kid to the park because you're not having to cook a meal every day, or whatever else it might be that would save the energy from that bucket and be able to actually do the thing that's that's meaningful for them yeah, and that's quite, it's hard, that isn't it, I think, and that's people don't often think that that's what ots do.
Speaker 1:I think, like you say, they often think ots they went with my kids, um, they might, you know, like you say, they might more kind of.
Speaker 1:It might be wheelchair-y stuff or it might be, you know, orthopedics or neuro, but actually when and I do, kind of you know, I work with parents as well is that I do quite a lot of talking about what does that actually look like? And still, parents are really tricky sometimes to work with, and I'll I'll sit with this one as well is that we start talking about ourselves but we quick, very quickly, come back to what the kids need and we have to be I have to be really really kind of gentle but firm about this is about you. We're going to talk about you because I think parents will just naturally go, oh, but the kids need and, like you say, we'll power through, and then, of course, we get burnout, um, you know flares, all sorts of things, that that kind of that management of our, our time and our energy is so important and ot's are really great at helping with that yeah and it's hard when there's so many systemic issues in placement that mean there isn't funding and there isn't support and it's and it's.
Speaker 2:Then it's like, okay, well, how can we conserve energy where possible? Do you need a shower stool? You know that's a quite simple. Do you need to shower every day is often a question.
Speaker 2:I ask as well it's like what are the little tweaks in the week? You know, a perching stool in the kitchen is another, often like a common one. Like go get a stool If it helps you to sit down to prepare a meal. Sit down to prepare a meal, like you know, whatever the little bits are, cause you know with kids you can't just shut them in a room. You know, like you, you've got to continue to look after them.
Speaker 1:Right, yeah, we can't do that.
Speaker 2:So yeah, so then it becomes okay. So, within your constraints, okay, you do have to work full time. That can be a really tricky conversation to have it's like. Well, you might need to let go of some of the expectations that you were brought up on. Another question I often ask people is whose voice is that when there's a, you know, when there's that niggly voice in their head?
Speaker 1:going. Oh, but you can't, you should.
Speaker 2:I'm like, yeah, whose voice is that?
Speaker 2:Yeah, yeah yeah, you know it, you should. I'm like yeah, whose voice is that? Yeah, yeah, you know it's like. You know people like if you need to run the dishwasher twice, run the dishwasher twice. I know that's got an energy cost involved if you're watching your power bills. But if it's got um, I mean energy as an electricity, but then the energy, the physical energy cost for you of having to wash the dishes by hand or rinse them. Yeah well, how do you kind of weigh that up? And there's lots of um.
Speaker 2:There's a system I don't use it very much because it's a bit too binary for me but there's a system called energy accounting where you look at what where your withdrawals are and where your deposits are for energy and how you can get your your energy bank balance balancing.
Speaker 2:Um, for me it's tricky because things are so fluctuating, so one day something might be a withdrawal, another day it's a deposit or it might be both at the same time, and so for me in my head it's a bit more complicated than that. But those are some useful concepts to discuss when you're kind of talking about this idea of okay, how do we conserve some energy here so that you've got more over here? Yeah, and and really work on then that idea of that we're not just looking at the day-to-day, we're looking at the week, we're looking at the month, we're looking at the year how do you manage energy over an extended period? Because, yeah, you might be able to overdo it one day, but if you try and do that every day, that'll result in a much bigger crash at the end of that.
Speaker 1:So, yeah, and it's just interesting the way you're talking about the dishwasher thing, because when I did the dishwasher it runs and then it sits in the dishwasher because I just think I haven't got this, I haven't got the energy to get it all out again. So if anyone needs it, can you just yeah, this is what I think. I just leave it in storage, it's out the way, the door's shut and all right.
Speaker 2:The kids are going, do you have to fold the laundry and put it away? Could you have a dirty basket and a clean basket? Yeah, maybe that's not the way it should. There's so many inverted air. Yeah, that's the thing, but the way it should be done, or whatever. If that's what works for you and that's better for your energy, so that you can actually play a game or you know whatever it is that you like to do, then have a dirty basket and a clean basket and that's your washing process, right Like. There's a really great book called um how to keep house while drowning, and she talks about a lot of these things, like have a laundry basket and a rubbish bin in every room, you know. Or if something accumulates somewhere, set up a system for it where it accumulates. Don't like try and force yourself into a structure that isn't actually going to work for your brain and your body yeah, who is that?
Speaker 1:did you say what was their name?
Speaker 2:uh, her name is casey davis. The book's called how to how to keep house while drowning. Is the book?
Speaker 1:okay, we'll put that. I'll put that in the show notes because that sounds really interesting, I think that one. It's quite a useful book. I just the caveat she's.
Speaker 2:She's maybe posted some slightly problematic things on facebook, okay um in the last few months about neurodivergence. I don't know the whole context, but just like you know the endorsement of the book is not an endorsement of everything she says.
Speaker 1:Okay, take what you need and ignore the bits that actually maybe aren't quite so helpful. Okay, that's not in the book itself.
Speaker 2:Those are some separate social media things that okay, anyway.
Speaker 1:Yeah, I was just thinking because I think you know, with with what you're talking about and that kind of that pacing, isn't it? And that energy conservation, it's a really it's not easy, so it's something that we kind of you hear people talk about.
Speaker 2:Oh, you just need to manage your spoons and I just think yeah that's really hot, it's really what happens when I wake up and I don't know how many spoons I'm going to have that day until I start going, or actually I wake up with zero spoons, but I still have to do things like. I'm feeling like that today. I'm exhausted today and I've got a three-day conference Wednesday, thursday, friday. I don't actually know how I'm going to manage that. I'm going to be negative spooning because I'm not recharging overnight at the moment while I'm traveling.
Speaker 2:It's been really stressful and it's like well, sometimes we do need to push through, but if we push through for too long, then we up in burnout, which is what happened. You know the what kicked off. You know my kind of like chronic fatigue things and what I, looking back now, it was, it was an autistic burnout, but I wouldn't have got as sick as I did if I listened to my body and I kept pushing through. And I kept pushing through for like two years, you know, and I wasn't listening to the early signals and, and I know again, if you're a parent, that's going to be really hard to listen to the signals when you've got to get a kid up and to school and and whatever it is and it's. You know I'm not a morning person and you know I would like to be a parent we're hoping to be but that's going to be a really hard. Part of it for me is getting up early. My ideal wake time is 9 am and kids don't do that, so that is going to be really don't. No, that is going to be a really difficult thing for me to try and manage still getting enough sleep and enough rest.
Speaker 2:And another thing I talk about is different kinds of rest as well. So sleep is not the only way that we nourish and recharge ourselves. And so then this concept of I split it into four. There's various ways of splitting it. There's a book that splits it into seven, but I split it into cognitive, physical, spiritual, and I can never remember all four when I start listing them. Anyway, there's a resource on my website on it.
Speaker 2:But just this idea. So for me, I would use to like not have a lie down because I wasn't going to have a nap, there wasn't enough time to go to sleep. But I'm like, actually, if I lie on my bed and listen to my audio book for half an hour, I'm still resting my body, I'm resting my sensory system, I'm giving my brain a break, all of those things. But sometimes my rest needs to be movement, and actually I need to go do some gardening as my rest, which is not how we typically think of rest. But I think when you're chronically ill, it's like, well, we need to kind of fill different buckets, and sometimes that's by moving or doing something enjoyable, even if you know it's going to be an energy drain. It's a, you know, like my conference this week, um, which will be in the past when this actually goes out, but, um, you know that is a worthwhile energy drain for me.
Speaker 2:You know to have traveled here and I get you know I'm staying this week with a lovely OT who I met online last year and we're meeting in person for the first time and I'm staying in her house and it's just beautiful getting to connect with a like-minded OT and I'll get to see a bunch of them at the conference as well, and so it's like, yes, well, that kind of activity is incredibly depleting in many ways. It's also really nourishing in others. So I, you know, you know, we need to have quite a nuanced view of energy expenditure and use and nourishment, because they're, yeah, things can deplete and nourish at the same time. Yeah, and we, you know, we don't always know, even until we've started, something like going to the supermarket, that's always depleting, that's never nourishing yeah, yeah.
Speaker 1:So there's some deliveries yeah.
Speaker 2:So for the, for the depleting things, what can be outsourced? Can you get your shopping delivered, you know, you know, whatever those things are, that if it's never going to be at all nourishing and it's not a priority for you and you can afford to outsource it, or you have the supports to outsource it, there's no moral failure in outsourcing it. It doesn't mean you're a bad person or a bad parent. If you're not able to do the grocery shopping or the laundry or all of the cooking right, that is not a moral failure. That is actually recognizing your limits. It's brave.
Speaker 1:Recognizing your limits and asking for support, that's brave yeah, and do you think, do you kind of see, with the parents that you work with, do you get kind of reoccurring challenges, are kind of typical. What's typical? I don't know, I shouldn't be even using the word typical as an untypical. I see, um, but do you know what I mean? But kind of the parents come and when you work with them they've kind of got these. You kind of know what they're going to say, what might be some of the difficulties for them that you're going to go. Yeah, I know this is going to come up.
Speaker 2:Conflicting sensory needs is a really common one.
Speaker 2:So when the parent has a different sensory profile to the child yeah, and they're trying to figure out how to compromise, while also, you know, age appropriate the child may not have the cognitive capacity to understand that what they're doing is hurting their mother's ears, you know, or their gender neutral parents ears, you don't, you it's. So it's a really complicated one to manage that one because, again, kids are loud and they're messy and that's part of play and growing up right. So there's a wonderful OT I follow called the Occuplational Therapist. I'm sure you are familiar. Yeah, so they post a lot of content about that. They're a parent and they post a lot of content about the conflicting sensory needs with their children and how they manage it. Um, and neuro wild does as well. She's a speech speech therapist down here in australia and so, yeah, there are some wonderful people. Again, I work with adults. So most of most of the stuff I talk about, while the concepts are applicable across ages, my, my content is very much focused on supporting the adult and when I'm working with a parent, I'm focused on them, I'm not focused on the child.
Speaker 2:Obviously, stuff will come up, um. So, yeah, sensory stuff would be a big one. Executive functioning is another big one. How do they manage to remember what to send to school, on what day, when to pick up, drop up, like? There's so much executive functioning involved in managing a household, let alone being a parent, so that's another one. And then, yeah, it's the guilt of not being able to do anything, the things that other parents might be doing, not having the energy to go to a park or go to a you know, whatever outing it might be, um, but having to adapt um or um. Not wanting to use obvious like mobility aids is another one. And how to manage using a cane or a walker or a wheelchair. And how to explain to the kid about fluctuating capacity in whatever way is age appropriate. But you know, kids know, they know that something's different. And being able to talk to them about that in an age appropriate way, about the limits and the capacity, and okay, well, let's do this. But then I'm going to need a break.
Speaker 2:Um, I've had some really interesting conversations with I've got cousins who are quite a lot younger than me, um, the youngest one is maybe 12 now, um, but he is quite a sensory seeker and he would um want to climb all over me and hug me really hard and with chronic pain. I had to have a conversation with him when he was quite little, but he couldn't do that with me. He needed to ask before he hugged and it needed to be very gentle and he couldn't do the rough play with me and so I couldn't meet his sensory needs in that way. He needed to do it in another way, and it was really wonderful to see both him and his sister being really respectful of that. They knew that if they hugged me it would hurt me and it wasn't intentional. If they did do it by accident, um, but they were able and like from quite young, like he might have even been four when we started talking about this, because I've been chronically ill their whole lives yeah and so like.
Speaker 2:From quite young we were able to talk about why he couldn't jump on my back or or, you know, hug me really hard and things like that and like. So kids from quite young can, can learn to be respectful. And again, it's not that you're asking them to do things that aren't age appropriate or to take on responsibilities that aren't age appropriate. Having to take on responsibilities that aren't age appropriate, having you know, been parentified myself and having had to take some responsibilities for my brother from when I was about 12, like that's not a fun time. So I'm not saying that at all.
Speaker 2:And we can have conversations with children about disability. I mean, we, we have to. It's really important that we do about different needs and capacity and different sensory processing. But there's definitely a lot of emotional stuff that comes up and often when I'm working with someone, I'll suggest they work with a counselor or a psychologist as well. Um, just for those, my work does sometimes cross over, but for some of the, you know, deeper seated trauma, deeper seated core beliefy stuff, I'm like you need some actual psychological support with this stuff and we'll focus on this and they'll focus on that and we'll work on the stuff together. But yeah, shame, shame's a big one.
Speaker 1:I think that's really important. Really interestingly, I think just recently, I've started to have conversations with my kids about some of the um difficulties that I've had with with pain, relation and energy and all that kind of stuff, and I think up until just very recently I've always hidden that from them, thinking I was doing them that was the right thing to do, was they didn't need that burden. And I think there's quite a lot of pressure that you know you shouldn't tell the kids too much, that you're the parent, you shouldn't overburden kids with all this information. And I really struggled with that and I sat with this for a long time, not telling them um, and they're now my boys are 13 and 15, so they're quite old now um, and it's only been probably in the last six months. As things have become, the pain has become really difficult for me that I've started to have those conversations with them and, like you said, kids know they knew something was wrong. They just didn't know what it was and I think I made it worse not telling them that's the thing.
Speaker 2:If we don't talk about it, they'll think it's them yes or they'll think the worst yes absolutely. If they don't know what it is, they'll be like oh no, are you dying? Yeah, you know, that was the first question I said.
Speaker 1:When I said to them I've got an inflammatory arthritis, my first question my son said to me, my younger one, are you gonna die? Yeah, and I'm a solo parent as well, so I think there is that kind of that worry anyway. Yeah, but I was awful and I thought I'm sure that must have been going through the backs of their heads. They knew something wasn't't quite right. You know, I was struggling, I wasn't moving. Well, I was cranky, I was upset. A lot of the time and lots of appointments at hospital and of course they had no idea. They just I was going oh, I'm fine, I'm fine because that's what we do. We're fine, they know you're not.
Speaker 2:Oh, that's the thing, kids, they know, they're really intuitive. You know, it's like you know like a horse, right, like you can't, yeah, be in tune with a horse when your thoughts are out somewhere else, right, they, they sense it. And again, like, because I work with largely neurodivergent people, it's like they know, they know when you're not okay, like if I show up to a session kind of a bit off, you know, it's not kind of bad enough to have to have, like, called in sick and cancelled the set. I mean, called in sick, I'm my own boss, um, but to have cancelled the session, but I might give them a heads up at the start, going, hey, I'm a little bit more tired than usual, it's not you.
Speaker 2:Yeah, because it's very easy for those clients who have had a lot of negative experiences in their lives to personalise whatever tone might come out, accidentally or being a little bit less patient and validating than usual. And they'd be like what have I done? It's like no. Or I had that when I was in my last job, when I was teaching skills classes, and I'd say at the start of a session look, my chronic pain's much higher today if my face looks grumpy, that's what it is. It's not because I'm grumpy with anybody. It's because I'm in a lot of pain internally.
Speaker 2:I'm okay to be here.
Speaker 2:I'm still like I'm all right, but I am in a higher level of pain than usual and it's like people pick that up yeah like there's, I mean I know we want to, you know we want to protect people from from things, but at the same time, it's like people pick that up. Yeah, like there's, I mean I know we want to, you know we want to protect people from from things, but at the same time, it's like letting them know actually creates more safety, because you're you're being authentic, you're talking, you know, and it's not that you're burdened, you know. Obviously you need your own support so that you're not yes putting you know, using your kids for emotional processing?
Speaker 2:yeah, yes, like there are, of course, limits and even the youngest of kids will know when something's off and when especially when they're young and you are their safety if they know that something's off that is terrifying yeah, yeah right, and so it's like how can we, in an appropriate way, talk about hey, yeah, this is what chronic pain means.
Speaker 2:It means you can't give me a really big hug. We need to do hugs this way and then you can direct. You know, you can direct the stuff in a different way, find different ways to be affectionate and to spend time together. You know, like maybe you need to do more things like board games than adventure parks.
Speaker 1:Yes, You're not going to hang me upside down on one of those roller coasters ever.
Speaker 2:Yeah right, yeah, yeah, but maybe they can go to a sport and you can sit on the sidelines so they can still get. Because that's another conversation. It's like what am I limiting what? What access to things am I limiting for them? Yeah, um, as well can be another source of that shame. And then also, if a parent is neurodivergent and chronically ill, their kids probably got some stuff going on as well, and so does their kid actually need some consideration for reduced activity and energy conservation as well so I know it's great modeling, isn't it?
Speaker 1:for our kids? Is that when we model that, that actually it's not all about us hiding and masking and getting through this, that actually I can, even with our kids? We sometimes need to let them know this is what our needs are and be able to advocate for what we need. And by doing that, our kids then go, oh, that's okay to do, yeah, and we need. And by doing that, our kids then go, oh, that's okay to do, and we don't encourage masking in our kids.
Speaker 2:Yeah, yeah, I can have a need, I can express it and we can figure out a way to meet it. And it's not always easy, and you know, of course, like you know, I know it's hard for you know, like you might not want your kids to see you crying, for example, but at the same time, a healthy expression, modeling healthy expression of emotion is really important so that they know okay, I can have, I can express those emotions as well. I don't need to hide them when, if we are just hiding stuff and pushing through, all they're learning is that yeah, yeah and emotions are okay there's not.
Speaker 1:They're not nothing to be frightened of and we have them and we recover and the recovery bits.
Speaker 1:The really important bit is that we, we will recover and it will be okay again, but at this moment I'm feeling this and it's really big and it's, you know, it feels a bit uncomfortable and it's yeah, you can see it, um, but how important is that for kids to be able to see? That I feel quite important. I've that's something we talk about a lot in our family. Um is about emotions, and no emotion is wrong. We just have to kind of find a way around it and sometimes we have to sit with it. Sometimes, those emotions we do have to sit with and they're not nice, and they're not comfy and sometimes we might not do things that we're super proud of either.
Speaker 2:But then also the modeling of the repair, right, hey, I'm really sorry, I snapped at you. I was blah, blah, blah. I'm gonna do my best to not do that again, not promising that you'll never do that. Going back to the section stuff at the start right, yeah, yeah, if you, if there has been something, or you're like, hey, I'm really sorry, I know we plan to do this today. I don't have the capacity, can we reschedule it too, and can we do this instead?
Speaker 2:Right, like modeling that, all of that, right, and how we can express our needs. Hopefully the kids can learn, I mean and it's so hard within the systems as well, because you know, like we might model expressing the needs, but then they might try that at school and get shut down, and so it's like it's not a perfect system, but you know that if we can at least do that, then hopefully there's less burnout down the track for everybody parents and kids that we can have a cap. Like you know, I look back at my childhood. We had a lot of pajama days at the weekends and I'm like that's probably because my mum was super burned out. Yeah, right it was. We had a lot of home and pajama days at the weekends and it was like a fun thing, right. But you know, you look back on those things, it's like that's probably because she had no energy to take us anywhere.
Speaker 1:Yeah, yeah because she was working. But how amazing, though, as well, that you can create that safe space at home and, like you say, you can't, or we can't, control what's going to happen when we're out in the world of work, or you know, the kids are at school and you know the schooling system.
Speaker 1:Anyway, I don't know whether it's any better in new zealand but, um, in the uk, yeah, we can give our kids a safe space at home to be able to go through those emotions and being able to advocate for their needs in a safe way. Um, as parents, I think that's.
Speaker 2:That's the best we can do, not being perfect, of course, um, not perfect, doing the best you can do Not being perfect, of course, not being perfect doing the best you can and modelling where you can, and instilling the care and the support and the validation of experiences.
Speaker 1:Yeah, If there was a parent listening today and they either suspect they've got a chronic illness because I suppose that's another thing sometimes people don't even realize I hadn't even touched on that. That's not even one of my questions. I'm going to go off on a tangent in a minute and, rebecca, and if you don't worry, then pull me back, but I was just thinking actually, when I think about it, you know how long diagnosis takes. When I think about my eds diagnosis, I first went to the doctors, I think, when I was 12. I'm now in my mid-40s and I've just been diagnosed with it and I have been to doctors over and over and over and over again. But that's really hard too, isn't? It is that you could be a parent suspect or might not even know that I, you, have a chronic illness and you are still just plowing through because it's not been picked up or diagnosed or validated or acknowledged that this is what you're going through and the signals just have to get louder and louder.
Speaker 2:And yeah, unfortunately often a diagnosis comes after some kind of health crash yes, burn out whatever it is. Yeah, things have to get really really bad for people to listen and to stop.
Speaker 1:Yeah, so if we've got a parent out there that maybe either suspects or knows they have a chronic illness, what would be your? Have you got a couple of like top tips that would help your magic wand?
Speaker 2:of course, yeah oh yeah, yeah, I wish I had a magic wand. Yeah, number one would be kind, be kinder to yourself. Yeah, you're doing enough. You're good enough, you're doing good enough. That's actually at the top of it. It's like if you're stuck in a critical self-talk, you're adding fire to your stress, like you're just exacerbating it, and so obviously that's it's difficult and it's not going to happen all the time and it's a practice. But self-compassion, it's being like hey, actually this is really hard right now. Other people in my situation would find this really hard too, and I'm going to do my best to get through it and I often find those parents, the ones that question, are the ones that are doing a really great job.
Speaker 1:Right, yeah, it's the ones that aren't questioning and going. I'm great. But you're thinking, oh crikey, but actually those ones are notoriously doing really, really well, but they give themselves such a hard time and are questioning all the time. Is this good enough? Am I good enough? Should be doing more? Everyone else is doing better than me. And you know again I'm going to go into the social media kind of stuff that there is this perfect image of what a family looks like. Well, I went on my holidays. I never saw one of those families when I was on holiday. Right, they don't exist.
Speaker 2:Um, yeah, so yeah, that would be my top one is self-compassion.
Speaker 1:Yeah.
Speaker 2:Just being kinder to yourself, and it's not an easy thing to do. I say it and I'm. You know it's an ongoing work in progress, but it's really important. And then I guess number two would be outsource. Get support where you can and I know there's constraints around that. Our funding systems mostly suck Wherever you are in the world. Mostly there's not enough. But whatever there is if it's available to you, outsource what you can. And reducing the expectations isn't what I mean, but changing your priorities. You know, like are your kids happy, healthy and fed? Well then, does it matter that there's a? You know like are your kids happy, healthy and fed? Well then, does it matter that there's a? You know three loads full of laundry waiting to be done? Not really, yeah, you know it's. It's like yeah, what are you prioritizing and how can you change what you're expecting?
Speaker 1:of yourself and it is that help thing, isn't it? I think I did a podcaster, like a solo podcast, a little while ago just about accepting help. Um, because sometimes there is the issue where we can't always get help. I know that that's hard, but sometimes people are offering help but we don't accept the help. And I got into this I was talking about my podcast is that there's almost, I feel like there's this transaction with help that if somebody helps me, I have to be able to help them back and if I can't, I have to say no. Um.
Speaker 1:And you know, when you're in the thick of it and in crisis or in flare or whatever you're in and you're finding life really difficult, the thought of being able to help somebody else is just too much. I can't, I can't even do what I'm doing, let alone help someone else. That, then, being able to accept that help. But I was talking about actually some people need to be able to help us. Sometimes we need to let other people help, because it does bring a connection with people being able to help somebody else they wouldn't be offering if they didn't want to.
Speaker 2:I think that's the other really tricky thing is that. And also like help is not always obviously directly reciprocal as well. Like, if somebody helps you physically, maybe there's a way you help them emotionally, yeah. Yeah, it doesn't mean that they come and clean your house and you have to go clean theirs, right? It's not that transactional and so trying to. You know the ways that I've struggled with this a lot in the last God, how many years has it been Like 13, 15 years of chronic illness so far, but that I do still contribute. It looks different, yeah, but I do still contribute to my household, right? So so find you know, yeah, yeah, if you are in the thick of a flare, you don't need to. Yeah, it's.
Speaker 2:Yeah, it's getting away from that transactional belief yes and that all that it needs to happen straight away. You know, maybe somebody helps you and you help them five years down the track when you've actually got more capacity to do that. So I think again it's and it's not, again it's not a moral failing to accept help either. It's not that you aren't doing enough, it's it's like if somebody's offering to help, it's because they want to, yeah, and and it's and it's their responsibility to watch their own capacity as well yes, sometimes we get you know we get nervous, that it's like oh god, am I being too much?
Speaker 2:it's like well actually that's the other person's responsibility to to let you know when it's, when it's too much. Yeah, um, and so, yeah, yeah, the self-compassion, outsourcing and finding things that you can do and that you can do with your kids, and that is going to look different, right, and that doesn't make it bad. Yeah, I think that would be. The third thing is finding what it is that you enjoy together, that is within your physical, emotional, cognitive capacity, and prioritizing that.
Speaker 1:Yeah, and those are the first things that go, aren't they the things that we enjoy and bring us joy, and those are the first things to go and we stick with. You know, I've got to do the, the washing or the cleaning, all that. You know, all that kind of stuff and actually, like you say, like when you're describing three loads of washing, it sounds like my downstairs kitchen at the moment, but you know, but what does that matter? No one sees that, apart from the kids when they're trying to get to certain things.
Speaker 2:But that's not what they're going to remember, though, right? No, they're not going to remember that there were three loads of washing, they're. They're going to remember that you played a board game together, or that you watched a movie together, or and again, I'm kind of talking about, like, lower energy activities. You know some people that's not the case, and they actually do need to move a lot to support their chronic illness. So, um, but yeah, finding those things that you can do as a family and, and really, you know, figuring out how to prioritize those in your energy expenditure over the week, even if it might be in really short bursts. You know, is there a puzzle on the dining table that you work on together for five minutes a night? You know, it doesn't have to be a big thing, right?
Speaker 2:I think sometimes we we also get stuck, and it's another thing as an OT, that I do about breaking things down. For people, it's like okay, so you want to do this thing, how about we start down here? It's not a lesser thing, but how about we kind of build the capacity for whatever it is that you want to do? So, you know, if, if you're unable to sit at the table for more than five minutes. Well, well, that's what you can do, and so then, that's the activity limitation that you're working within, and so, okay, I'm going to do a puzzle for five minutes.
Speaker 2:That might not be your capacity limitation forever, but if you're trying to go to a I don't know football game where it's going to be super loud and you have to walk and it's crowds and it's hush and the food's no good for allergies, you know that's not a thing for you to be doing. If you've got a kid who's into footy, get somebody else to take them watch a game on the telly. Like there's other ways to access the thing. You don't have to deprive your child of their interest. Um is finding other ways and then, yeah, finding the bits of it that you can do together that's what's great about being an ot, isn't it?
Speaker 1:that's what I think.
Speaker 2:That's what ot is all about yeah, thinking outside the box and getting creative. It's like, yes, you can't go to a. If you can't go to a football game, how else can you access that?
Speaker 1:yeah, yeah, yeah, I think there are other ways to access that yeah, if you're ever confused about what ot is, that little bit at the end there, it's just that sums it up. That is ot. That's what we do. That's what makes it so great. Um, just coming towards the end, I'm just thinking about um, if people were kind of interested in what you're doing, obviously I'll put all of rebecca's contacts, your socials, all that kind of interested in what you're doing. Obviously I'll put all of Rebecca's contacts, your socials, all that kind of thing, your website. I'll put all those in the show notes so they can find you and they can get in contact with you. But if you've got anything coming up at the moment, in the not so distant future, that kind of people might be interested in, or anything you wanted to talk about at the end.
Speaker 2:So I've been largely focused on getting to this conference. I have got some training stuff coming up later in the year on exploring values. It's targeted mostly at health professionals, for one of them is like a standalone webinar in July, and then later in the year there's a series of webinars which kind of teaches you the method that I've been using to do values work with people. So those are so far my planned ones. I'm hoping to get some on-demand content up. I do training on sensory processing and neurodiversity, affirming practice for mental health, and I'm hoping to get some of that up on demand Not up yet Again, spoons depending because that will go up at some point.
Speaker 1:You've got some downloads and things on your website't you?
Speaker 2:yeah, I do, yeah, so yeah, so I've got a range of worksheets and graphics that are on my website. Some of them are free, other ones are paid. Um, there's also a bunch of blogs that are all free. Um, if you know, I've talked about, um, adapting hygiene, different kinds of rest, there's quite a lot on sensory processing, there's some stuff on values so all the kind of topics that I care deeply about and do a lot of in my work. There's resources there and, yeah, so I'm most active on Facebook.
Speaker 1:I'm not on the other socials.
Speaker 2:It's just too much. Yeah, I hear you, yep, yep. Other socials it's just too much. Yeah, I hear you. Yeah, yep, yep, um, and so I'm. I work as an OT. I work in Australia and New Zealand. Um, I'm pretty full. I had to close my books for most of this year and they're just open, but I'll probably have to close them again almost straight away. Um, but I am looking at doing a bit more in the mentoring and supervision space as well as a move further into the year, just trying to find different ways to keep working within my capacity. Yeah, and still supporting other health professionals is something that I really love to do. So, yeah, hopefully there's a bunch on my website that people find really useful. I share, like my Facebook page, I'll share stuff that I've created haphazardly whenever it gets created, and I share a lot about my own lived experience and how I'm kind of managing my life as well.
Speaker 1:Brilliant, and that makes such a difference, doesn't it, when we can hear from people that actually are living it, rather than just being told this is what you need to do.
Speaker 2:Oh yeah, none of what I talk about is theoretical it's, it's, it's.
Speaker 1:You're living it.
Speaker 2:I might have learned the term pacing, but I learned the term pacing from going through my own program. You know my own fatigue and pain management programs for myself. Yes, you know, it was something that I learned before I even went to uni to be in OT. So, yeah, these are not just arbitrary theoretical concepts to me, these are my daily lived experience in managing stuff and that is what people come to me for. They want the lived, they want an OT, but they also want the lived experience makes such a difference, such a difference.
Speaker 1:Yeah, rebecca, thank you ever so much for coming on. It's nice to talk OT.
Speaker 1:I'm so nice um, but thank you ever so much for coming on. There might be Rebecca coming back in another kind of conversation further down the line. We'll keep you posted on that one um, but it just leaves me to say thank you ever so much for coming on. We really, I really appreciate it and I'm sure the listeners listening in will appreciated listening and thinking about chronic illness and parenting, um so, and all your wealth of experience and knowledge. So thank you ever so much thanks for having me.
Speaker 2:It's always fun to chat about what I love to do.
Speaker 1:Yeah 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.