Supporting our kids

[00:00:00] Speaker A: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn't feel like something you want to explore today, you might want to visit another podcast and come back to us another time. [00:00:13] Speaker B: Discovery College acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. [00:00:28] Speaker C: They have never ceded sovereignty at the time. [00:00:32] Speaker D: You're trying to do anything you can. [00:00:34] Speaker E: To keep your child safe. [00:00:37] Speaker D: You're calling whoever you can to help and hoping that that's met with the right intentions. [00:00:43] Speaker E: And certainly from a parent's perspective, I. [00:00:45] Speaker D: Think you're always doing the best you. [00:00:47] Speaker E: Can and looking for those good intentions. [00:00:50] Speaker D: But it's not always met with the right approach. I think, and especially when you're that. [00:00:57] Speaker E: House that have needed help more than once or twice, you sort of start. [00:01:01] Speaker D: To think, oh, no, am I seen as that parent that needs help again? [00:01:06] Speaker E: So I think you do question yourself a bit. [00:01:17] Speaker A: I'm Lucy. [00:01:18] Speaker B: And I'm Rachel and we're the hosts of the Extremely Human podcast. [00:01:22] Speaker A: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria or moments that feel completely unreal. [00:01:34] Speaker B: On Extremely Human, we hear from people who've been there and share what they've learnt along the way. Together, we ask, how can we meet the full range of human experience with kindness and compassion? In this episode, Michelle shares her journey supporting two young people through extreme distress. From hospital stays to first responder call outs. She talks about the challenges with emergency services and the healthcare system, the power of just being there for someone instead of trying to fix them, and why she created Caboose, a community app for neurodivergent people. [00:02:20] Speaker C: I'm actually really excited to be talking to our guest today, Michelle. [00:02:24] Speaker E: Hi, Rachel. Nice to be here. Thank you for having me. [00:02:28] Speaker C: Do you feel like you can say. [00:02:30] Speaker E: A little bit about yourself to start us off? [00:02:32] Speaker D: My name is Michelle and I am. [00:02:34] Speaker E: The founder of an app called Caboose. And I'm also the parent of two young people who have had a journey through various mental distresses. [00:02:44] Speaker D: I think today I'll be sharing a. [00:02:46] Speaker E: Lot about their story, but also my story as a parent going through that multiple years in a row. [00:02:54] Speaker C: We like to start with each guest by inviting you to tell us a story about maybe your own or someone else's disproportionate reaction to something. [00:03:06] Speaker D: I had a pretty extreme ish reaction to a situation around Medicare. What was happening was that my daughter was in hospital at the time with anorexia, and we needed to claim something. [00:03:23] Speaker E: With Medicare, and we had to check in on something. And I tried to go into the app, and all of a sudden her profile wasn't there, and I couldn't get. [00:03:32] Speaker D: Into what I needed to get into. And I was already feeling quite anxious. [00:03:36] Speaker E: Because of the hospital situation, under pressure. [00:03:40] Speaker D: With, you know, trying to do work. [00:03:42] Speaker E: And manage appointments and the hospital. [00:03:45] Speaker D: And I was like, this can't be happening. And when I called, then, of course, you have to allow about an hour. [00:03:53] Speaker E: Or more to get through or more. [00:03:57] Speaker A: And did you have frustrating music playing? [00:03:59] Speaker D: Yes, that's right. Which was making me even more anxious. And then when I got through, I. [00:04:06] Speaker E: Was told, yeah, Your daughter is 16, so you can't see that anymore. Sorry. [00:04:10] Speaker D: And I'm like, like, hang on. [00:04:13] Speaker E: First of all, she's 16. She's not an adult. [00:04:17] Speaker D: But apparently, yes, you are an adult. [00:04:19] Speaker E: In the eyes of the law. [00:04:21] Speaker D: And I said, but she's in the hospital. How are we going to manage this when she actually can't be here to. [00:04:29] Speaker E: Authorize me to access it? [00:04:31] Speaker D: So eventually, after going through layers of, you know, supervisors, they did give me access. [00:04:38] Speaker E: But the irony afterwards with all of this is that even my daughter can't access her own profile until she's 18. [00:04:46] Speaker D: So between 16 and 18, nobody can access the profile. [00:04:52] Speaker E: So there's some flaw in the system. But you can imagine, as a parent. [00:04:56] Speaker D: Trying to get something resolved that seemingly. [00:05:00] Speaker E: Should have been straightforward, just triggered. [00:05:03] Speaker D: I can almost still feel the anxiety today. [00:05:05] Speaker F: So frustrating, though, it's just like the prime example of how some systems make a shit thing worse. [00:05:11] Speaker D: Yeah, yeah, yeah. [00:05:13] Speaker C: It's really made me think about the question because, you know, often the stories we hear around that don't feel disproportionate, they feel really valid responses to really frustrating or dehumanizing experiences that we all have. [00:05:32] Speaker F: I was speaking to someone today, and I was like, we were talking about how the theme of the podcast is extreme states, but she was like, maybe it's more that the world is actually extreme and that the response is actually quite a normal response to an extreme world that we're living in. [00:05:48] Speaker D: That's an interesting take, I think, especially. Especially these days when there's so much. [00:05:53] Speaker E: Pressure for so many things. [00:05:55] Speaker C: Which leads us into the hopes of this podcast, really. We hope through these conversations that we'll be able to explore different human experiences of distress. Some people refer to it as extreme states, and some in Other ways. How does the word extreme states fit for you? [00:06:15] Speaker D: I think it fits fine and I think talking about extreme states or people in distress, I think it just validates the situation a lot more. So I think it can be very isolating for many young people, parents, carers, when you're going through an extreme state. [00:06:38] Speaker E: Or feeling distressed in some way. [00:06:41] Speaker D: And I think talking about it just sheds some light on it and hopefully. [00:06:46] Speaker E: Provides strategies to people who need them. [00:06:55] Speaker F: Michelle, you've mentioned that you're the parent of two young people who went through their own mental health distress. You're the first person that we've spoken to who's the parent of someone who's gone through something like that. Would you mind talking about what that experience was like for you or for your children as well? [00:07:13] Speaker D: So, yes, you're right, Liz. I've got two young people and my son is now 21, but he started going through some very serious mental health. [00:07:26] Speaker E: Challenges when he went into secondary school. [00:07:29] Speaker D: So he was a teenager and at first these things were happening that, yeah, were just. We couldn't really understand what was going on. And this is in the context of Nick having autism and adhd. There was a lot of behavioural things. [00:07:48] Speaker E: Going on and, you know, school was. [00:07:50] Speaker D: Sending him home and. And then we had like a very. [00:07:55] Speaker E: Serious issue where, you know, police were called to the shopping center and, you. [00:08:00] Speaker D: Know, he was having, yeah, quite an extreme meltdown. And from my perspective, it was just, yeah, I was just really terrified, really. [00:08:12] Speaker E: About what was going on. And of course then when you have emergency services involved, you know, trying to get them to understand the context in. [00:08:20] Speaker D: Which this is happening is also really, really tricky. But that particular one, I guess, sticks with me because, you know, there were, there were so many people around and then, you know, we were outside the. [00:08:35] Speaker E: Shopping center, you know, in the car park and you've got multiple emergency services there. And then I had to call friends to come and get my daughter to. [00:08:48] Speaker D: You know, take her, because we just didn't know, like, what was going to. [00:08:51] Speaker E: Happen in the next few hours. [00:08:53] Speaker D: Over the coming years, there were multiple. [00:08:57] Speaker E: Sort of situations where he was very distressed over bullying and social isolation. [00:09:04] Speaker D: And, you know, we ended up having. [00:09:06] Speaker E: Police at the house. And there was one particular time where. [00:09:10] Speaker D: I thought, oh, no, they're going to, you know, they're going to end up. [00:09:14] Speaker E: Hurting him because they're worried for their safety. [00:09:18] Speaker D: But he was, you know, he was. [00:09:20] Speaker E: Just so distressed and at the time. [00:09:24] Speaker D: Like, everyone was just, I think, very. [00:09:26] Speaker E: Confused about what was, what was going on. [00:09:28] Speaker C: We've often been curious about the experience of those responding to those situations, particularly frontline police or paramedics. We've heard various different things in these discussions. Are there things that you think police or ambulance or those first community responders did well for you or for Nic? [00:09:54] Speaker D: I think we were very lucky on, for the most part, we had very. [00:09:59] Speaker E: I guess, very considered responses. [00:10:02] Speaker D: But then there were times when, you. [00:10:05] Speaker E: Know, first responders just didn't understand the situation. [00:10:08] Speaker D: And I think that has been one. [00:10:11] Speaker E: Of our biggest challenges, to be honest, is when, particularly when there's an outburst of some sort for a young person, autistic, neurodivergent young person, it's not always. [00:10:25] Speaker D: Met with the right approach. Like, particularly, police would try and go in too hard and that would escalate things even more. And so that happened on multiple occasions. And of course, I know we always have to remember that they're trying to keep the community and people safe. But there's a balance there, I think, in knowing the young person and also. [00:10:49] Speaker E: Listening to the family and, you know. [00:10:53] Speaker D: Knowing what needs to kind of happen, rather than going with their sort of, you know, process the rule, rulebook, I. [00:11:03] Speaker E: Guess, of, you know, do this first. [00:11:04] Speaker D: Then this, then this. [00:11:07] Speaker E: Sometimes they have to think outside the square. [00:11:11] Speaker C: I don't know if you can say some more about what it means to go too hard, you know, in what Nick might have experienced. And then you also said we had really considered responses. What does that mean? Like, what does a considered response look like? [00:11:27] Speaker E: Yeah, so they're going too hard. [00:11:30] Speaker D: Police have a. Their training is to use a very strong voice. [00:11:37] Speaker E: And I think for my son, that. [00:11:40] Speaker D: Would always trigger a negative response, particularly at that age. And so if there's already a heightened. [00:11:47] Speaker E: State or a heightened kind of situation. [00:11:50] Speaker D: Going in with a tone like that, just. It was like pouring fuel onto the fire. And already, we've already got to a point where we've escalated, where we need police involvement. [00:12:05] Speaker E: And so that kind of tone just doesn't go well with some young people. [00:12:12] Speaker D: And then we would have other police. [00:12:15] Speaker E: Who would take the time to understand what was going on, would try and. [00:12:23] Speaker D: Offer, like, distraction techniques, like, hey, why don't you come and sit in the. [00:12:28] Speaker E: Front here and let's have a look. Do you want to see the line nights? [00:12:31] Speaker D: You know, really sort of trying to. [00:12:35] Speaker E: Use distraction techniques to calm the situation, because at the. [00:12:39] Speaker D: Once the situation has been diffused, even a little, you can usually then manoeuvre into an ambulance or maneuver into, you. [00:12:49] Speaker E: Know, mum's car or Whatever. [00:12:52] Speaker D: Whereas once you've started, you know, going. [00:12:54] Speaker E: Down a pathway of being too aggressive, it's very hard to come back from that. We've seen situations with Nick where, you. [00:13:02] Speaker D: Know, he would then run away and. [00:13:04] Speaker E: Then the danger of that is huge because, you know, running into traffic or, you know, leaving hospital and police are sort of on a hunt for, you know, someone who's run away and that becomes very dangerous. [00:13:19] Speaker C: I can't imagine what it must feel like to have to reach out to police when you have a very distressed child in your care. How was that for you as a mum and how are you responded to as a help seeker? [00:13:34] Speaker E: That's an interesting question. [00:13:37] Speaker D: At the time, you're trying to do anything you can to keep your child safe. You're calling whoever you can to help and hoping that that's met with the right intentions. [00:13:48] Speaker E: And certainly from a parent's perspective, I. [00:13:51] Speaker D: Think you're always doing the best you. [00:13:53] Speaker E: Can and looking for those good intentions, but it's not always met with the. [00:13:58] Speaker D: Right approach, I think. And especially when you're that house that. [00:14:03] Speaker E: Have needed help more than once or twice, you sort of start to think, oh no, am I seen as that. [00:14:09] Speaker D: Parent that needs help again? [00:14:11] Speaker E: So I think you do question yourself a bit sometimes in those situations. [00:14:16] Speaker D: They've got their little book and they're like, you know, and what's your name. [00:14:19] Speaker E: And what's your date of birth and. [00:14:21] Speaker D: You almost feel like you're being interrogated and yet like that sort of anxiety. [00:14:27] Speaker E: As a parent when all you want to do is just like, get to the hospital, let's get this situation calmed. [00:14:34] Speaker D: Down, let's get the help we need. But instead you're kind of there answering. [00:14:39] Speaker E: Sort of questions about what's going on. [00:14:43] Speaker F: Is there something that you would ask from first responders to have in their mind when they're responding to people in distress? [00:14:50] Speaker E: I think first responders. [00:14:53] Speaker D: Need to be able to differentiate between what is a real criminal intent situation versus a family. [00:15:04] Speaker E: In crisis or a mental health challenge. [00:15:08] Speaker D: And I know that's a very fine line and, you know, and we don't want to put first responders at risk in any way. But I think if you're first responder, you, you have a fair idea. I think if you're going to a. [00:15:25] Speaker E: Situation that's a criminal situation versus a 13 year old who's in, in distress. [00:15:32] Speaker D: And even, you know, later as a. [00:15:35] Speaker E: You know, as an adult. One of the things we ended up doing sometime after our first and second. [00:15:41] Speaker D: And third involvement with first Responders is actually having a profile like, you know, I insisted that they all had my. [00:15:51] Speaker E: Son'S details and our address and a. [00:15:55] Speaker D: Bit of a bio because I think, you know, that ultimately, whilst we were. [00:16:00] Speaker E: Well known, not for all the right reasons, but we were well known, it. [00:16:05] Speaker D: Allowed at least some knowledge of the. [00:16:09] Speaker E: Situation before they got there. [00:16:10] Speaker D: Because I was, you know, incredibly worried. [00:16:12] Speaker E: That they would attend and something terrible would happen because they wouldn't realize that we weren't in a hostage situation or something like that. [00:16:25] Speaker C: What would you want them to know or understand that you feel they don't at the moment? [00:16:29] Speaker D: I think with, particularly with neurodivergence and. [00:16:33] Speaker E: Autistic young people just having an understanding that. [00:16:40] Speaker D: What they say in a crisis or in the heat of the moment isn't who they are. [00:16:46] Speaker E: And that often it's the distress talking, not the child or the young person talking. It's very easy, I think, for police. [00:16:57] Speaker D: To say they've been assaulted by a. [00:17:00] Speaker E: Young person when it's just a reaction. [00:17:03] Speaker D: To that, you know, that sort of situation. And it's not to say it's right or to say that, you know, you. [00:17:13] Speaker E: Know, that the child shouldn't have pushed. [00:17:15] Speaker D: Or, you know, what have you, but. [00:17:16] Speaker E: It'S just trying to put it into some context that, you know, as a parent, how many times have you had. [00:17:24] Speaker D: To contain, you know, even a neurotypical toddler? Often you're seeing toddler behaviour in teenagers. [00:17:33] Speaker E: And it's just for them to recognise that that is the case. [00:17:45] Speaker C: We've often, Lucy and I have reflected on what it means for police to be called in these situations. Is there something that you think you wish could happen instead? [00:17:59] Speaker E: It wasn't for a while that I realized that actually if you call the ambulance, because that's what you need is some medical support to get your young person to hospital or something to help calm the situation down. That the police are often sent first and. And it took me a long time. [00:18:20] Speaker D: To realize that that was what was happening. That actually if you call for an. [00:18:25] Speaker E: Ambulance because, you know, you need to get some help, that the police come first. [00:18:30] Speaker D: And I don't think we have the. [00:18:34] Speaker E: Resources to have mental health clinicians come first. But sometimes that's probably what, what you. [00:18:41] Speaker D: Really need, you know, is somebody more. [00:18:45] Speaker E: Sort of specialized to the situation. [00:18:48] Speaker C: How about emergency departments and you know, kind of being met in an emergency? I mean, they're also environments that are tough to be in and there's a lot of hyper or hyper arousal or lots of heightened emotions. [00:19:06] Speaker D: Yeah. [00:19:07] Speaker C: For people in emergency situations. I wonder what your experience as a parent carer been. [00:19:14] Speaker E: I've had too many of those. [00:19:18] Speaker D: In fact, I was just saying that. [00:19:19] Speaker E: Last year was the first year in eight years that I haven't been to emergency with one of my children. [00:19:27] Speaker D: They're, they're not conducive to calming anything down really. And it's not, oh gosh, it's not, it's not the medical carers or the. [00:19:41] Speaker E: Nurses that are the problem at all. It's the whole system. [00:19:48] Speaker D: I think there's too many lights. Quite often, well, depending on how you. [00:19:54] Speaker E: Go in, you're kind of waiting. They're over subscribed many times and it always seems like the crisis has happened. [00:20:02] Speaker D: At the end of the day and you're waiting, you might be in the. [00:20:08] Speaker E: Ambulance, in a corridor and then of course, you know, like it's heightening the young person. [00:20:14] Speaker D: And unfortunately for Nick, you know, that meant, you know, being restrained multiple times. [00:20:19] Speaker E: Which then continues, you know, the problem. [00:20:23] Speaker D: And then you've got a guard at. [00:20:24] Speaker E: The door and it's pretty awful. [00:20:27] Speaker D: And then, you know, you're kind of. [00:20:30] Speaker E: Tired as well as the parent. So you've been on, you know, for hours and hours. [00:20:35] Speaker D: You've got, you, you've managed to get. [00:20:38] Speaker E: Through the first responders and you've managed. [00:20:40] Speaker D: To get the ambulance. [00:20:41] Speaker E: You've managed to get to hospital. If things haven't settled down by then, you know, there's restraints and you know, it's terrifying. You're standing outside a door and all of a sudden this child who's mentally distressed over something that's happened is now in some padded room without anything. [00:21:01] Speaker D: When you're a parent and you're really worried and you're scared about what's happening or you think you might not get. [00:21:09] Speaker E: Through the night at home, so many times, you know, I've slept, you know, on a beanbag or sat outside the door, or you're desperate to do anything to kind of just get somebody else. [00:21:21] Speaker D: To help watch, basically. So sometimes you feel like you have no choice. The longer it goes on, I think you end up making those choices though. You end up going, okay, well how. [00:21:32] Speaker E: Can I contain this situation at home? [00:21:36] Speaker D: Maybe you do become more confident at managing the distress at home. And so you learn different things from. [00:21:44] Speaker E: Being in the system a bit. And certainly after it probably took quite. [00:21:49] Speaker D: A few years, like with my son. [00:21:51] Speaker E: I didn't realize, I think, the complexities of mental distress and you know, and. [00:21:58] Speaker D: I didn't fully appreciate the challenges with. [00:22:02] Speaker E: The system and I Thought they were there to help. And so I just thought that if we went to hospital that they would help. And actually it wasn't always the best choice. And I think so often that because the system is so stretched and when. [00:22:19] Speaker D: They realize that you're not going to. [00:22:23] Speaker E: Like do something that minute or that hour, that you can go home. And so you've just been there for hours and you know. Yes, things have then calmed down because there's been some medication on boarded and this, you know, you've waited around for half the evening and night and into the morning and then it's like, okay, well you can go home now. And it's like, okay, well we'll see you tomorrow then. Because, you know, that was our pattern for some time is we'd go home. [00:22:53] Speaker D: We might be back in a few days. [00:22:56] Speaker F: Sounds so stressful and exhausting. [00:23:00] Speaker D: Yeah. [00:23:00] Speaker E: It's not until you come the other. [00:23:01] Speaker D: Side that you realize maybe how exhausted you've been. [00:23:04] Speaker E: Yeah. Okay. [00:23:06] Speaker C: I think this is off the topic a little bit, but I wonder if you could design an urgent care facility for someone experiencing an extreme state mental health distress, what would it look like? [00:23:20] Speaker E: What I'd love is if there, if. [00:23:22] Speaker D: There was a safe place that was. [00:23:25] Speaker E: Resourced by mental health professionals that was sensory friendly even for those who are not neurodivergent. Just that low lighting, you know, some calm spaces. [00:23:38] Speaker C: I'm imagining something that, you know, feels a bit more like home, like environment where, yes, young people or people of any age can sit in a comfortable, sensory safe place that they've, you know, comforted by those they. That care for them, care about them. [00:23:58] Speaker D: Yes. And that there's a coach there to. [00:24:00] Speaker E: Help the parent too, because as a parent, you're a. You might be sleep deprived, you're already stressed, you already know there's a lot going on for the young person. [00:24:11] Speaker D: You're already trying to, you know, advocate for services. [00:24:16] Speaker E: You're already trying to fend off issues online or at school. [00:24:21] Speaker D: And even when you know what you could or should be doing, like in. [00:24:27] Speaker E: A crisis, it's quite hard when you're the one in the crisis to employ those skills. And so having, you know, having someone who knows you know, that's just a little bit removed from it, I think would help. [00:24:46] Speaker C: I think it'd be good to hear a bit about similarities and differences of Cartiers Journey. [00:24:53] Speaker E: Yeah. So when Katya first was admitted, I. [00:24:57] Speaker D: Really thought, oh, there's a medical issue here that we're going to hospital and, you know, we're being admitted because her. [00:25:05] Speaker E: Heart is not functioning as it should be. And I had, in hindsight, no appreciation for what was going on in terms of her mental health. And it wasn't until we were in. [00:25:16] Speaker D: The hospital and I was there that, you know, after one of the meals. [00:25:22] Speaker E: The eating disorder voice bubbled up and. [00:25:25] Speaker D: You know, there was, yeah, a very. [00:25:27] Speaker E: Big outburst on the ward. [00:25:28] Speaker D: And I was like, like, what is going on? [00:25:31] Speaker E: I don't understand this. There was significant mental distress going on. And that the difference was that she had been internalizing it probably compared to Nick, who had been externalizing it a lot of the time. [00:25:46] Speaker C: If you can describe the experience as a parent carer, of someone who's internalizing their distress in a way, like anorexia, like, what is that experience like for you? Or was. Sorry, what was that experience like for you? [00:26:02] Speaker D: Yeah, as a parent, it's very confusing. I think, when you first. When you first come across anorexia, like, you really don't know the level of distress that's actually going on. And I think that's quite hard as. [00:26:21] Speaker E: A parent because you, on the surface. [00:26:24] Speaker D: You know, you're seeing someone who may have it together or may just be very high achieving, you know, sociable, interested in lots of things. [00:26:36] Speaker E: And so on the surface, everything seems. [00:26:39] Speaker D: Like it, you know, it's fine. [00:26:42] Speaker E: And I think as a parent, when. [00:26:45] Speaker D: You realize it's not fine, the anxiety then is like, gosh, how did I miss this? [00:26:51] Speaker E: Like, not just skipping one meal, but clearly skipping multiple meals. And I think depending on how close you are with the young person, it's. [00:27:00] Speaker D: Like feeling a bit betrayed that you. [00:27:02] Speaker E: Didn'T know that this was going on. And, you know, like, why weren't we talking about this, you know, before it got to that point? [00:27:12] Speaker F: It sounds like it's been very well disguised. Like you mentioned high achiever and, like, interested in a lot of things. [00:27:19] Speaker E: Well, I think what I've learned is that. That eating disorders are very clever. [00:27:23] Speaker D: Yeah. [00:27:23] Speaker E: And, you know, they know how to trick and disguise. And it's learning, I think, about the condition, you know, we'd spent so long learning about neurodivergence and the signs and. [00:27:36] Speaker D: The triggers and identifying, you know, when things might be getting tricky. [00:27:42] Speaker E: Whereas eating disorders, I think, a whole new level. [00:27:46] Speaker C: I'm curious about how you experience being met by services with two children expressing distress in such different ways. And as a parent of those two. [00:28:00] Speaker E: Young people, that's a very interesting observation. We had first responders multiple times too. With my daughter and her eating disorder, they were much, I want to say much better at managing that situation because they could see the internal distress and. [00:28:18] Speaker D: The fragility of her. [00:28:20] Speaker E: Whereas when you're seeing someone who is mentally distressed, who's physically able, I think they were different approaches, actually. [00:28:30] Speaker C: Okay. [00:28:31] Speaker E: And I also wonder about gender, to be honest. My son was, you know, a large young man and had been on medication. [00:28:39] Speaker D: So was, you know, physically bigger at. [00:28:42] Speaker E: That time and so stronger. And, you know, so it's interesting then maybe how our unconscious bias plays into that, you know, for first responders. [00:28:55] Speaker C: I often hear stories about how eating people with eating disorders responded to, not necessarily by the health system, but by the broader community. And, you know, this, you know, kind of not always helpful ways of understanding those that distress and what's happening for them. What are your thoughts about that? [00:29:17] Speaker E: There's a lot of people who misunderstand eating disorders. I hadn't seen a lot of information about it. So, you know, when we first, you know, started to deal with, you know, the medical profession, I was like, oh. [00:29:32] Speaker D: No, it's not anorexia. I like it. [00:29:34] Speaker E: I don't think that's right, you know. [00:29:37] Speaker D: And, you know, because you are presented. [00:29:40] Speaker E: With, here's the, you know, here's the book about it and you should read about it. And it's like, oh, wow, this sounds really terrifying. [00:29:49] Speaker D: And you know, this is really extreme. [00:29:50] Speaker E: No, that's not us. And so I can also see how the community would think that if you haven't had exposure to it. And so this is where I think helping schools and helping even GPs and other medical professions, psychologists, understand it more. I remember we did go down the path of having a psychologist and whilst. [00:30:17] Speaker D: You know, lovely two actually had no. [00:30:20] Speaker E: Idea of the extent of what was about to play out, I look back and I wonder if they had even had a little bit of extra training or a little bit of extra knowledge, like, what would have happened, you know, could we have prevented the journey, even just lessened the severity of our journey a little? [00:30:48] Speaker A: What would be something you'd want parents. [00:30:51] Speaker F: Who are caring for their children, who are going through some rough times. Is there a message you'd like to pass on at all? [00:30:58] Speaker D: I think that you can't fix it. [00:31:02] Speaker E: Even though you want to. I think that's one message. And the other is that to try and like sit with the distress or. [00:31:12] Speaker D: Sit with the fear rather than trying. [00:31:15] Speaker E: To again, fix it. [00:31:18] Speaker D: Because I think that's one of the. [00:31:19] Speaker E: Hardest things to do, is just to go, okay, it's going to be okay, or you hope that it's going to. [00:31:25] Speaker D: Be okay, but just to be able to sit with that. [00:31:30] Speaker E: One of the techniques that I learned through both experiences, actually, is not to. [00:31:36] Speaker D: Try and counter how they're feeling or. [00:31:40] Speaker E: Fix how they're feeling, but to just. [00:31:42] Speaker D: Acknowledge how they're feeling. And I think it's one of the. [00:31:46] Speaker E: Most powerful things I think that you can do is just, you know, just. [00:31:50] Speaker D: To validate the feeling and even just to be able to say, particularly with. [00:31:56] Speaker E: Neurodivergent individuals, is, I can see you're feeling like this. Is that right? [00:32:01] Speaker D: Sometimes you have to go the step. [00:32:02] Speaker E: Further with neurodivergent young people, whereas, you. [00:32:05] Speaker D: Know, with Cartio just a bit, even being able to empathize with how she's feeling. [00:32:12] Speaker E: Not that you can ever put yourself into someone else's mental health or mental state. I think just being able to acknowledge that was one of the biggest things. [00:32:22] Speaker C: Why do you think it's so powerful, that technique? [00:32:25] Speaker E: Yeah, I think it's just validating the. [00:32:29] Speaker D: Feelings and also being seen, especially because. [00:32:33] Speaker E: I think many times when you're in an. An emotional state that you're. [00:32:39] Speaker D: You're feeling unseen and people aren't seeing. [00:32:42] Speaker E: How distressed you really are. [00:32:44] Speaker C: I can imagine how hard it is not to want to fix it. [00:32:48] Speaker D: Yeah. [00:32:49] Speaker C: Can take it away. [00:32:51] Speaker D: Yeah. [00:32:51] Speaker C: But why do you think that doesn't work? [00:32:55] Speaker E: I don't think it's very empowering. [00:32:57] Speaker D: I think that ultimately, what I've always. [00:33:01] Speaker E: Said about lots of aspects of parenting is I want both my children to have the tools in their toolkit to do what they need to do, Whether it's supporting their mental health or, you know, making good choices in. In life, I think you have to let them make some choice in order to learn that. And so I think if you're always fixing or you're always trying to solve, then you're not really giving them the skills they need to solve it. [00:33:30] Speaker D: Because, let's face it, you know, a. [00:33:33] Speaker E: Youth mental health issue might become an adult mental health issue one day, or. [00:33:38] Speaker D: You know, maybe they'll be dealing with. [00:33:40] Speaker E: Family one day that has, you know, their own mental health challenges and giving them the tools, I think ultimately is the best way. [00:33:51] Speaker C: I often wonder, and I. I'm not sure about this, but I often wonder if it also kind of creates this sense of. It's unbearable. [00:34:01] Speaker E: Yes. You know, it's kind of unbearable for me. Yes. [00:34:05] Speaker C: So it must. It's even more unbearable for you, you know, so it kind of makes the ability to experience it harder, maybe. [00:34:16] Speaker E: I think so. [00:34:17] Speaker C: I was wondering if you wanted to share something about a time when you feel like you've responded to distress well or you've noticed other people responding to yours or other people's distress well, there. [00:34:33] Speaker E: Was one person in Stepping Stones back when we had our long stint with. [00:34:38] Speaker D: Nick there that just responded beautifully to. [00:34:44] Speaker E: All manner of distress in him and. [00:34:47] Speaker D: Was able also to work with the. [00:34:51] Speaker E: Family in a really constructive way. [00:34:54] Speaker F: Could you say a little bit more about what that looked like? [00:34:57] Speaker D: I think just really human centered, like, you know, she would take time to work out what does he like to do and what does he like to talk about? And would talk about that. The first thing would be is, you. [00:35:12] Speaker E: Know, what have you been watching on. [00:35:13] Speaker D: Tv or you know, how's your lizard? [00:35:16] Speaker E: And do you want to bring your lizard in for a visit? So very much leaning into him as a human. [00:35:22] Speaker F: And I'm sure Nic will remember those interactions. [00:35:25] Speaker D: If I asked him, do you remember? He would say, oh, can we go for a visit? [00:35:29] Speaker C: You know, that's beautiful. [00:35:31] Speaker D: Yeah. [00:35:32] Speaker F: Can I ask what Katya and Nick are up to now? [00:35:36] Speaker E: Yes. So both are doing very well. So good to hear. That is very good. [00:35:41] Speaker D: And I think for Nick, having connection. [00:35:45] Speaker E: To community and having employment has really changed his whole outlook and I think that really helped. And it was one of the biggest things that I think helped us turn a corner was getting him re engaged with community and employment. [00:36:06] Speaker D: And yeah, the same for Katya. [00:36:09] Speaker E: Doing very well and finished year 12 now and ready to start that next chapter without the stress of high school, which is very distressing, I think, for our young people. [00:36:21] Speaker C: Michelle, do you think you can tell us about Carruth? [00:36:23] Speaker D: I guess throughout these years I've always. [00:36:26] Speaker E: Been thinking about what I could do to help and support neurodivergent individuals, to connect with others, because that was what was driving a lot of our mental distress. [00:36:39] Speaker D: You know, Nick was feeling lonely, socially isolated, was bullied online, was tricked online. [00:36:47] Speaker E: To meeting people who weren't who they said a whole manner of things. And. And so I decided that I would start a community app called Caboose. And Caboose is a place for neurodivergent individuals of all ages to come and find other neurodivergent individuals around the same interests, age location. We also have support groups online, so talking about different things like rejection, sensitivity, which is a really big topic for neurodivergent individuals. And we have peer mentoring and we also have a job board on the app as well. [00:37:33] Speaker C: So it's so cool. Yeah. [00:37:35] Speaker B: Congratulations. [00:37:36] Speaker C: How did you come up with the name. [00:37:37] Speaker E: So Caboose is a. Well, caboose with a C is the last carriage in a train where the crew meet. And so it seemed fitting to change it to a K because the sea wasn't. You weren't able to register that. [00:37:54] Speaker D: And being, you know, a train, I. [00:37:58] Speaker E: Know it's a bit stereotypical because not every neurodivergent person likes trains, but where the crew meet seemed to be fitting. [00:38:06] Speaker F: I love that. [00:38:07] Speaker C: And where do people find Caboose? How do people connect with it? Yeah. [00:38:13] Speaker E: So you can download it from the App Store, Google Play, or head over to our website Caboose app. Caboose with a K app. And there's a download button and it'll be in the show notes too. [00:38:25] Speaker C: Have you heard feedback from people about how Caboose has helped them or what difference? [00:38:32] Speaker D: Yeah. It's really lovely when you hear from the community, whether it's a parent. [00:38:38] Speaker E: We have under 18s in a separate part of the app. And so often I'll get emails from parents all over the world saying, this is so great. I'm so glad my son, my daughter, you know, is connecting. They're talking more than they have in, you know, however many months or years. So that's really lovely. And then on the flip side, you know, community, you know, adults who've come and found other adults and continue to show up to our groups or message me in the app, because I'm in the app as well. So you can come in and say. [00:39:11] Speaker C: Hi, thank you for sharing your wisdom with us. [00:39:14] Speaker F: You're such an amazing advocate and you've been so generous in sharing your story and thank your children as well for letting us hear their stories because I think a lot of people are going to benefit from hearing the wisdom that you've passed on today. [00:39:28] Speaker E: So thanks, Liz. [00:39:30] Speaker F: Thank you, Michelle. [00:39:30] Speaker E: Thank you. [00:39:39] Speaker G: Well, that was a first for extremely. [00:39:41] Speaker B: Human Lucy, having a parent come along. [00:39:43] Speaker G: And have a chat with us. I really hoped that some of our policy makers and service providers could listen to that because there's such good wisdom around how to better organize ourselves and respond to people and family members. [00:39:58] Speaker A: Yeah. And does it in a very gentle. Yeah, gentle way. Not condemning anyone, recognizing everyone. Everyone's doing their best, but there's always room for improvements. [00:40:07] Speaker G: So beautifully spoken, actually, wasn't it? Because what I really admired about Michelle is I'm sure there was experiences that were really disappointing or where it was really not well treated. That's an assumption I'm making. [00:40:24] Speaker C: But what she chose to focus on. [00:40:26] Speaker G: Were the things that helped and the special efforts individuals went to that made a difference. [00:40:32] Speaker A: Yes. [00:40:33] Speaker C: And it really affected me. [00:40:35] Speaker D: Yeah. [00:40:35] Speaker A: The thing that really stuck with me was Michelle talking about not wanting to fix her child. You can't fix things, as hard as that is, but to be there is really important. And I like the part how she was talking about she really wanted her children to have the tools to do what they needed to do in life, because if she solved everything for them, if something else came up later in life, they wouldn't have those skills. [00:40:58] Speaker G: I think it's sort of similar to what I was feeling. I really was kind of moved by the power of love in Michelle's stories and also the amazing things that can come from adversity. Yeah, I know. We'll hear from Katia in our next episode. And I, Michelle's daughter, and I, you know, really encourage people to tune into that because I think it will help. [00:41:21] Speaker C: Make sense of some of Michelle's story. [00:41:23] Speaker G: We hear Michelle, her son Nick, and Katya all doing amazing things with their. With their expertise. [00:41:30] Speaker F: They're a powerhouse family. They are. [00:41:33] Speaker G: You know, it's really inspiring, and it's not a conversation that I'll forget quickly. [00:41:51] Speaker C: Discovery College acknowledges that the views shared. [00:41:53] Speaker B: In this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health. [00:42:02] Speaker A: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery College, please head to our website. Discovery College.