Growing up with a parent who has Delusional Disorder - Interview with Lotti O'Dea

Joel Kleber: 0:06

Thanks for joining me Lotti. So with Lotti O'Dea who's from satellite foundation and one of the offices here in North Melbourne. So thanks for doing this and we've had Rose on from satellite before, if anyone listens to this podcast will know, I think it's a fantastic organisation would have helped me a lot as a kid. So I think it's important to get more people from satellite like yourself, just talking about what you're doing the great work you're doing, how people get involved, and all that sort of stuff. So your title here is evidence and insight, lead, and youth advisor for satellite foundation, but you're also a participant in the programmes as well. So maybe you want to start about start talking about how you got involved in satellite in the first place.

Lotti O'Dea: 0:39

Yeah, absolutely. So I grew up in New Zealand, which might already be obvious from my accent. And yeah, that's where all my kind of family and lived experience of having a parent with mental illness occurred. But then, about five years ago, I moved over to Australia. My mum was hospitalised at that time, I was feeling really kind of isolated and lonely in that experience. And I started looking around at different organisations that help people in my position. I came across some but they were really for parents that had children with mental issues. And then I found satellite, and I was like, Oh, wow, this, these are my people. And I joined the 2019 young leaders programme, met some other people in my position, admit satellite, and the wonderful people there. And then it was a huge surprise, a year later. Or maybe six months later, they gave me a call, they remembered me, which was a new experience for me and mental health land. And they said, Hey, we've got another programme going on. How about you come join us? So I did that. And then eventually started talking about what I do in my professional life. And yeah, my kind of personal and professional lives combined. And so yeah, now I get to work as youth advisor, which is really finding opportunities for our young people to speak more about what they want to see in the world, including at satellites and what they want satellite to look like, and then evidence and insights, which is more around. We know what we think we doing really great stuff with young people. But we need to be able to translate that into something that government can understand or philanthropists can understand, as well. So there are two quite different roles. But I love that both are great.

Joel Kleber: 2:39

Now let's talk about your lived experience then. So you mentioned your parents minute. And you said something about being forgotten about as Yeah, yeah. Which I think a lot of people can relate to. So maybe I'll talk about your experience with mental illness itself, and maybe go into more about your experiences about being forgotten or Yeah, why you feel that way? Yeah,

Lotti O'Dea: 2:57

so um, my mum has delusional disorder, which, from my level of understanding of different mental health diagnoses is fairly similar to schizophrenia. But she doesn't have hallucinations around noise or kind of visuals. But she does definitely experience delusions and just psychotic episodes and just really distress. So she's had that probably long before I was born. She was not diagnosed. My mum, I have an older mum, she was born in the 1940s. And so I was a little surprise in her 40s. And yeah, but so she was about 46, when she had me, wasn't in a great relationship with my dad, which just kind of exacerbated all these things that had probably been under the surface for a very long time. And around the time I was eight, she had her first cycle of being put into hospital. Going through that coming out. Being under New Zealand, the called the compulsory treatment acts. I think there's similar concepts here in Australia. And really, yeah, it just was under that. And then doctors kind of got sick of this person just turning up and said, Oh, look, she's probably fine. She's a very articulate person. She puts kind of her clothes together. Well, and I think people saw that and said, a person with mental issues can't look like that. So she's probably fine. And so they would take off the compulsory Treatment Act. And then the kind of what we came to realise was this cycle began again, of her disease. writing that she's not sick, she doesn't need the medication. A few months later, the delusions begin again, in small ways build up to really big ways become a harm to herself or to other people, and particularly me as a child in that situation. And yeah, cycle starting again,

Joel Kleber: 5:22

I can relate to everything you said, because very similar mine. Yeah. And um, yeah, one thing you said, which I think most people want to hear, my mom was the same presented really well had really nice clothes and looks like she had it all together and stuff like that, but it will miss his way to hide it. But so you said you're an eight when you sort of first started realising or you can sort of remember what was going on? So what were you thinking around that sort of time? Or do you remember sort of the feelings? Or what was happening? Or what how did it change your perspective? I guess?

Lotti O'Dea: 5:50

Yeah. Well, I mean, I think the thing that I felt and I feel like other people with similar experiences feel not really realised that it's not normal for a while. And so things like my mother thinking she, she's being followed all the time. So I would, my role in the car would be to write down the number plates of all the cars that were following us. And then kind of, you know, going in a car ride with some friends and kind of wondering why they don't have to note down the number plates of the other cars, or Yeah, my mom talking to me about quite intense things relating to like six or pregnancy at quite a young age, because she thought I could be pregnant to this man that she had delusions about and was jealous of all women, including her own daughter about and just kind of, I guess, having those experiences assuming that they're what you should be doing, because it's your mum, and you love and trust her. And that's what she's there for. And then kind of observing other families where that didn't quite happen. And yeah, kind of slowly connecting the dots. And then a big event like a hospitalisation occurred, where I do have older brothers and sisters, but they're much older than me. So did like decades kind of age difference, where they would then try to broach the subject with me. But I think it was hard because I felt really protective of my mum, it was just me, my mum and my dog. And we were this little triad that were fiercely predictive of one another. And so even against my own siblings, I was like, I don't want you to take my mum away from me, even though she's doing these things that really scare me.

Joel Kleber: 7:47

I think it's a very well, people watching this who have similar experiences very common thing what you just said then? So yeah, that perspective things are because you as you said, that's your normal, right? Your normal is this and you love your mom or your dad. And that's you don't know any different. But as you said, you start piecing it together, when you might go to a friend's house or something, you just sort of you start working out, well, maybe my situations, not as normal. So how did you deal with that? Growing up in regards to how you framed it to yourself? Or was it just something that you love just your mom so much, you just didn't worry about it? Or how did you deal with that?

Lotti O'Dea: 8:19

Um, I think in part, I was a little bit scared of the alternative as well. So my mom separated from my dad. I was really nervous about being removed from my mom's custody and going into my dad's custody, I did not want that. And so I was afraid, you know, that wanting to love and protect my mum, but I was also afraid if someone kind of finds out what's going on. I'm going to be taken away from my mum. And that's scary for me. But I guess I sort of appointed myself as the role of, you know, I know my mum best. I know what she needs. from a really young age. And I was worried if I was taken away from her, she would also get worse.

Joel Kleber: 9:05

How did you deal with the hospitalisation offer? Because were you taking into see her? Or how did that help? What was the process like in New Zealand?

Lotti O'Dea: 9:12

Yeah. So I mean, I guess, my brothers and sisters, we're doing all that kind of behind the scenes work that as I've gotten older, I kind of understand what they would have would have been doing in terms of getting her signed up as an involuntary patient because my mum will always be an involuntary patient. But I didn't really find out about it until kind of the last minute or that's my recollection of it anyway. And I do they did take me in to see Mum, I do remember my brother at one point asking me if I could pack a bag for my mum and I remember just walking into her wardrobe and just being like, no I can't do this, it was just way too much for me to do. And it really just just really made me feel sad and feel like I was in a position I felt like no one else at my age was in. And I just felt extremely alone in that moment, despite the support of my siblings. And yeah, I, I have a really distinct memory of being in the psych ward in Wellington, in New Zealand, and just everything just been stark white. And seeing like, a room, it was kind of glass and it had like some frosting, so you could only see like, partly into it. And I could say my mum on the other side of the room kind of keeping, like, all together, sitting up putting a putting a face on, but also looking just terrified in her eyes. And I remember seeing the person sitting across from her, who was just this bald man within it just, I just remembered the light hitting his head. And just I don't know, it just seemed really strange seeing my mum in this incredibly sterile environment where, I guess in my mind at that age was where bad people go. And so that just really sticks with me, seeing someone that I love to match him was such a comfort to me being sent to this sterile environment, and scary looking environment.

Joel Kleber: 11:40

Did anyone explain much to you when the first time happened? Because it's remembered as well. It's very scary experience, as you said, and you just, you just don't understand that these places exist. Now was there did you meet the psychologists, there was anyone there like a nurse, the mental health nurse to explain things to you or we we provided any, let's say context, or any sort of caring guides anyway,

Lotti O'Dea: 11:58

not that I remember. I'm confident my siblings would have probably been in that role. And as I got older, I was definitely never really given like Sorry, older, but still under the age of 18. I was never given that respect, basically, by the mental health professionals, I think they saw not telling me information as protecting me. But really, it just completely disempowered me, because I was essentially on the front lines, I was her full time carer, I was the one constantly looking out for, you know, if someone looked at her in a weird way, you know, I was the one on the lookout to calm her down, cheer her up. So she didn't develop a delusion out of that situation. And so being kept in the dark by the mental health profession just amplified how lonely I felt. And the fact that I was just making everything up. As I was going, I had no idea what was really going on

Joel Kleber: 13:11

Plenty relate to what you said, then I think the key phrase is lack of respect. And, yeah, I sort of think, well, I don't think they're trying to protect us, I just think they just don't want me personally, I just think they don't want to get enough to deal with for good children hard work or, you know, whatever. But you what you said is the keys to where the frontline, whereas you're in the home with your mother, you're the emotional support, and you're the carer, and you know that person better regardless of whether you're eight years old, six years old, or 25 years old? Yeah, you know that person better. And you're right, you need to be treated with the with respect, because you will be more mature, and you will have an understanding of for Far, far more intense concept than other kids your age. And I think even now, I don't know what your opinion now is. Could be you deal with a lot of kids now, so probably you're better than me. But um, I don't know how much it's changed. But do you think it is productive? For what would you advise? If there's a parent in a in a minute mental health psychiatric ward? How should you involve the children? Or what would you think would be the most appropriate way to do it?

Lotti O'Dea: 14:09

I actually think just treating the child as the expert in the situation and not seeing them as someone that needs to be informed of something. I think treating them as so what what do you think's going on? What do you think makes mum or dad or whoever feel this way? And kind of just, yeah, treating that child as a peer because in that situation, they do know they have the depth of knowledge of that person or of that illness. Maybe they don't have the right medical jargon. But we're I feel like all these kids with all these like, mental health nurses that don't have the qualification, but we've got this Yeah, depth of emotional experience and you Instead of telling them something, ask them. And I feel like that's useful not just for making the child feel safe. But it's actually a huge information source for the mental health professionals as well, in terms of, you know, understanding, even just basic concepts, things like financial instability is a huge trigger for my mom's episodes, many children's like situations. And in many of these situations, the kids end up becoming not just the carer, but also the accountant of the household, as well. So I think the professionals understanding that perspective is also really helpful and empowers the young person, and makes them feel safe. So that if you did want to inform them of something, so it's like a diagnosis or give them knowledge, then you've built a kind of trust with that young person to do that. But I completely take your point, having that and investing in that kind of conversation takes time. And sometimes those professionals don't have it or don't want to invest it.

Joel Kleber: 16:17

I was gonna say, well, from dealing with a lot of young people you do now, what do you hear from them? In regards to how they're being treated? Is there a lack of respect still, to being involved more? What are you sort of hearing?

Lotti O'Dea: 16:30

I think in a clinical setting, this certainly still experiencing the same level of disrespect. I haven't heard really examples of how that's changed. I guess, at a societal kind of level, I feel like there's a bit of a chipping away at some of that. So phrases like, I guess, Cara in relation to mental illness, that was not a conversation that was happening in New Zealand, were at least up until the time I left about five years ago. Whereas I feel like it is here. And if you say the phrase young carer, maybe people don't fully understand the wide breadth that that could cover. But there's some foundational level of understanding that that could be so I feel like there's probably more respect coming from society to these young people than there is from in a medical or clinical setting to these young people. But I don't think either is enough.

Joel Kleber: 17:35

Yeah, I agree. I think the clinical setting, it's annoying to hear that because like you just think, you know, they this is not a communist, even as it's not everyone, but they could be a common issue. I mean, you think, as you said, what would it help you, it's just being acknowledged and just being spoken to the same as what they might have been speaking to your siblings, if they were just to be in the room and just to be spoken to at the same gas if you're eight years old, or you're listening or not, because because that memory really stick with her. When you get a bit older, you think they actually care. And they've treated me with a bit of respect, and I understand a bit more, whereas even to now you're saying I felt a lack of respect, right? That sticks with you, doesn't it? Exactly. Same thing with me. And that's why for me personally, it puts you off, you know, the mental health professional psychologists or psychiatrists, and then I've got a really bad disdain toward, just because of that way I was treated in my younger years, whereas you've gone the other way where you've gone and worked in that field. Whereas I'm inclined, we're involved in that you're involved not in clinical, but in the mental health profession in some in some way. But I think a lot of people who have added our experiences, who would be completely put off, yeah, and they might not get the help they need to deal with PTSD or to deal with all these sorts of things, because of that one bad experience, or just from that lack of come in the room and just talk to, and I think it's a five minute 10 minute thing. Yeah, but the impact could be huge.

Lotti O'Dea: 18:50

Yeah, I agree. And in fact, I think it's probably led to me being quite, you know, in mental health land, but in a non clinical way. Like, I think I would probably wouldn't be able to be a doctor anyway. But I think, yeah, that kind of experience has put me off those kinds of things, or that kind of career path anyway. So I guess, I've see satellite as really the antidote to that kind of treatment, though. Because we're a place where kids or young people and young adults as well can come in, and they can kind of set the agenda, including just things like what activities you want to do, or we have a lot of creative stuff. And whenever we have creative work, they can take that where they want to take it. And that to me is kind of Yeah, just the antidote to that opposite approach of you will do this or we just won't even talk to you. And yeah, and it's quite amazing to To say, in satellite environments, because you don't even need to talk about mental health a lot of the time, or you don't need to talk about diagnosis or what's going on at home, you can just let them be. And that is actually sadly groundbreaking. For a lot of young people

Joel Kleber: 20:20

here, because you've got everyone, there's got an understanding, like everyone's there for the similar reason. Yeah. And they know that. And as you said, when you when you were younger, you felt so isolated. Whereas if you had something like this, when you're younger, you know, just that isolation immediately goes, you know, you're not you don't feel lonely, you go right, cool. There is yeah, it's not, it's not just me as an isolated issue, there's a whole bunch of other people going for the same thing feel instantly better about yourself, or better self esteem, and all that sort of stuff. So how so with that, let's talk about satellite for this section, in regards to the programmes, what age, what age had actually people get identified as well? And what are you finding out the programmes and how it's helping people?

Lotti O'Dea: 21:01

Yeah, so satellite covers a really wide range of ages, which I think is fantastic. So we go all the way kind of down to that sort of eight year old stage, and then all the way up to 25. But also over 25, like when I first started, as a participant at satellite, I think I was 27. And they're sort of attitude is, all the kind of services or the or the funding related to services can be really cut and dry about certain age ranges for supports. But that's not how mental illness works. It doesn't go Oh, you're 25. Okay, cool, you're all your issues, challenges. So we are really open for people on kind of either end of that spectrum, to be part of our programmes. We then kind of section up age ranges between that. So kind of roughly sort of the eight to 12, spin the kind of 13 to 17. And then the 18 to 25 pluses. That's kind of typically how programmes are grouped up. And I can't remember this

Joel Kleber: 22:20

is important, because it's important cuz you sort of know what's you've maybe started, you've half gone round here was certainly go on but but as you set up to 25, or even beyond that, whereas people might be so put off by the experiences of the young age, and why not seek out anyone know, until let's say, 27 or 25, right, you know, me probably was 3031, because I've had such a bad experience as a young person. Whereas You're right. I think that open age, it's not just a cut off point where you're all sorted. It's a lifelong thing, unfortunately, what you're going to have to keep the only things but the other thing I was going to ask you about was the identification process. So how so when So is there something with a school? Or how do these kids get nominated into it? Or is it do many parents even nominate these people into the programme?

Lotti O'Dea: 23:00

Yeah, so in short, it's a big mix. We get referrals through the families with parents with mental illness, which is shortened to affect me get referrals through that process referrals through programmes like MacKillop Family Services. But we do get parents referring and their kids, which to be honest, just warms my heart so much that there are parents out there going, I have this thing, or my partner has the single my ex partner, whatever. That's not something to be shameful or guilty about. But it is something that means maybe my kid needs a bit of additional support, or just an opportunity to have fun with other young kids that are in a similar situation. And so we do receive parental referrals. And they're really open about it. And I've had the opportunity to speak to some of the parents, and it's just incredible talking with them. And yet as a person that didn't have something like satellite in their lives. It's yeah, it just warms your heart being like, wow, there are parents like that out in the world that are incredibly brave and courageous to do that. Yeah, it's just fine. What

Joel Kleber: 24:16

about schools? Do you match from schools? Because I think the schools being the teachers, they would know a bit about the kid situation as well. And yeah, for me, I sort of think it is if the teachers could have awareness around this is the thing in Victoria or whatever. You know, it makes it easier for them to refer as well. I don't think they've had a lot of options on your grant going before he would have known as well that schools on a bed. Any idea of what to do or

Lotti O'Dea: 24:37

No, I in fact, I distinctly remember a teacher because my mom was having a lot of issues. I pulled a lot of stickies at school, to be at home with my mum, but obviously that had an impact on like her able to earn an income. She's a single mum. And I distinctly remember a teacher pulling me into like a cup and just yelling at me saying that I was like faking being sick and all this stuff. And that that was making it worse for my mom. And yeah. So when you say they're not particularly informed about what's going on that kind of episode really hits home to me that not only were they just simply not there to provide appropriate support, in fact, they went the other way, and really did not assist me at all. But I think in short, like, No, we don't receive that many referrals through schools, we would we want them. And we're working on getting more so in a couple of different ways. So one is that satellites, getting more into delivering programmes in schools and working alongside schools to figure out what would actually be helpful. So we've tried things like targeted programmes, where young people that has parents or family members with mental illness, sort of recommended to satellite to create a programme. But now we're also working on programmes that are wider so kind of imagine like your class assembly or home class sort of approach where everyone gets that kind of education, because there's lots of things with the cohort that we talk about that also just relevant for other people like caring is not something that has to only happen when someone has a mental illness, there's plenty of transferable skills, and just being a good person from those kinds of programmes. So we're doing that kind of thing. But then, because of the Royal Commission into mental health services in Victoria, there's also other opportunities, as well. So like the Victorian government's invested more into, like mental health supports within schools primary and secondary, which is really exciting. And they've also got things like the mental health menu, where they're giving funding to schools, to choose off the menu of supports related to mental health and well being. And there's a procurement process related to that, but we're wanting to get on that menu with some of our programmes. So we're working in a few different ways to get into schools more. But yeah, it's gonna be a little bit of give and take, to some extent, there's only so much we can do until there is awareness, a that mental health is important in that day, that mental health belongs in schools, and say that it's not just when a young person themselves has a mental illness or faces a mental health challenge, but that if other people in their lives have that going on, that that young person deserves support and can access it, we exist.

Joel Kleber: 27:49

So let's talk about the school part. Because I think it's important because there's a lot of kids who will go to school and have to have all this stuff going on at home and then act normal at school, which you obviously know. So what do you think would have helped you from a school's perspective or because there's a fine line, like you don't want to use it as a like, as a kid, you could use it like as an excuse to have bad behaviour, and you get away with things, then all of a sudden, you doesn't, it's not a good behaviour to have. But also you do need some sort of understanding or some sort of help to try and acknowledge that that's going on, rather than trying to treat you the same as everyone else. So what do you think would have helped you from a school perspective?

Lotti O'Dea: 28:26

Well, I actually did have a really great experience at my school. A couple of reasons why it might have been a really good experience. And this is back in New Zealand is that it was like a private school, it was a boarding school as well, which gave me a bit of distance from my family, which I have to say was life changing and having that essentially respite from my mum during some of those years. And that was something that was spearheaded by my brothers and sisters as well. But I was a very, very, very academic student at my school, and I was very tough on myself and wildly over committed to a million different things. And then at some point, I was doing that and mum was not in hospital, but on the way there, basically, which I think is the hardest time once they're in hospital, it becomes a bit easier to be honest, it's the few months before it. And it was just getting way, way too much. And I can't remember why but at some point, me and a group of friends ended up in the staff room and I saw that they had a whiteboard. And on it they had things saying like, someone says appearance of separating or give someone so a bit more space to or slack in the classroom kind of thing. And I was like, Oh wow, they like there's a way to communicate to my teachers that I've got other stuff going on. And so I approached someone about what was going on for me, because it had always been very much on shutdown, I didn't want really anyone to know, apart from my friends. And they put it on this whiteboard. And I had a couple of different responses from staff. One was my English teacher, he came up to me, I think it must be like the day after it was kind of put up on the board. And he said, Hey, we don't have to have like a big conversation about this or anything. But I just wanted you to know, like, my dad suffered from alcoholism, and it was a big deal. But it hasn't like determined the kind of person that I would be. And then he kind of just like, let me be like, we didn't have to have a big heart out or anything, because I just wanted you to know that. And I thought that was just really nice. And then the second incident was my principal came up to me, and she said, Wow, this is very serious. Shouldn't we be letting your father know. And then my heart kind of just dropped to the floor. Because I was terrified it because I've been keeping us completely quiet from not just my dad, but my whole dad's side of my family. That if my dad found out, he would get custody of me, he would stop, like, like, take me out of my school. And I knew that my education in the school I was at was very good for me, and my life. And so just instantly terrified, like, what have I done? Why have I shared this? I've screwed everything up. And then I kind of said to her, no, I really would like you not to please. That would be very bad for my situation. And she trusted me and she said, Okay, I trust what you say. I'll follow your guidance on this. So it was a real moment of oh, my God, this could go so so wrong for me and my family, to been an incredible moment where an adult was trusting me as a technical child. But yet she respected me, which was a complete difference to the experiences that I was just talking about before. So it was it was a very emotional roller coaster for me in those few seconds.

Joel Kleber: 32:29

That's great to hear that from a school's perspective. I don't think it'd be overly common, but it's really good to hear that your school was like that. Yeah. Because as you said, like you remember it now it sticks with you, and all that sort of stuff. It's absolutely fantastic. So what I'm going to say to you now, is, you stay on a really good path, obviously, you went you studied hard, where? Where did you get that? Because you can go the two ways, I reckon you can either use as an excuse to go and I'm going to be bad or whatever, I'm going to do this and then blame this. Whereas you've gone the other way where you've gone work really hard studied and all that sort of stuff. So was it a conscious decision you made? Or how did you? Was it just naturally or how did you come?

Lotti O'Dea: 33:09

I think it was definitely influenced by my mom's like drive to education, she had a pretty traumatic childhood as well. And she saw education as her way out and noting that this is She's a teenage girl in the 1950s kind of thing. We were talking about this. So this is quite substantial, and she for all of my siblings, and I've really pushed hard on education. And so part of it definitely came from that. But I guess as well as like, once I got into, like a very fancy school with incredible other students and teachers around me, it kind of really dawned on me like wow, like this, this kid is the key to unlock lots of other things as well. And I guess, I think sometimes Yeah, you can say people not use it as an excuse, but it can get too much and get in the way of pursuing other things. If anything, I think I swung too hard in the other direction and kind of clung to education and being like a perfect A plus student kind of person that I had neglected the other parts of my life so it was just pull it together be a trooper you know, get good grades, get out of here. Whereas I wish I had taken the time to be like, how am I going how's my mental health? How's my emotional health Am I like a stable human being? Which I only kind of really came to do and university and as an as a 18 plus year old because I could make decisions relating to my own mental health and Um, that wouldn't be undermined or cancelled by my mom,

Joel Kleber: 35:05

What strategies did you use growing up to help you? Was it something where you involve? Obviously, education was important. So you would study a lot, which probably take you might have a lot of things. But um, because it's very stressful environment can it can be sometimes, especially as you said before the period when you know, they're really sick, or they bout to get unwell and made inventory, but you can't do anything about it. So how did you deal with that time? And what do you think about that period between that unwell period? So I've heard a few opinions on it. Like, you know, people go, Well, the person under the Act, they can't be, they can't get that back. If someone does want help, they can't really get forced to get help, or whatever. But saying that you've still got kids involved or who they're responsible for. So where does the priority lie, there's a priority life, the person with the illness or the other kids who are in their care. So what's the balance between it? So maybe you want to talk a little bit about what are your thoughts on that?

Lotti O'Dea: 35:58

Yeah. I mean, I think the that problem, I think, is really a system created problem. When you're in a family, where someone has a mental illness, and they don't acknowledge it, or in my mom's case, it is part of her illness she is in a sub nausea, I think is the right word for it, which she is incapable of having insight into her own mental illness was exactly the same. And so so many in the kind of schizophrenia sort of world are and but the system's not built for it. Because you know, the the wide range of mental illnesses kind of schizophrenia are particularly those more complex ones, they make up a minority. But I think the impact that those illnesses and challenges bring about, yes, they're in the minority, but the depth of impact in the in the impact on people around them is so huge. But I think because the system is built, ironically with this, the assumption that people are working rationally in it, but applying that to a mental health system, I think is just bizarre. But they assume that if someone is unwell a they'll recognise they're unwell be they'll recognise they need support and see they'll figure out a way to go get it. And I just think that the fundamental idea behind this wrong, so for a lot of people, and then you add in something like lack of insight, and then for the family, the there's two options, one is just to watch the person crash and burn. Two is to make them an involuntary patient, or put them under something like the compulsory treatment order. And we don't want to do that like it is, you know, you are sacrificing someone's human rights to do that. And it is extremely serious. But it's literally the only tool in our toolbox. And so I think when you ask that question, like where should the priority be? I think it needs to be on both. But I think at the moment, because the only tool in our toolbox is this one extreme measure. That's all we can use. And it's actually really hard to get access to it, which makes sense, because it's so serious. But there's nothing else for us to use.

Joel Kleber: 38:36

Yeah, you're right. And the reason why I asked that question is I posted something I think was someone who maybe had bipolar schizophrenia, had a crack back. And he's saying, well, it's not up to you, there's all these laws. And and I'm sort of thinking, Well, you know, when there's a child or when there's young people involved in their response for a primary caregiver, is then it's got to sort of shift a bit. And the annoying thing is, is that we know that person better than anyone else. And growing up my situation is we knew my mom was getting on well call me uncle, oh, you just gotta let it get sick, Joel until she gets the cops all the time. It's like, it shouldn't be like that, you know, you got a four week three week period, where it's highly risky, like, why can't we call the caseworker or someone to come around and check it out? And then you're right, because you're right, they don't have insight into themselves. And a lot of the time, they don't think they've got a mental illness, so they don't have nothing wrong with him. And that's not that's not having a crack at people at all with that, but that's just the reality of it. And you're right, it's a system construct what you just said then that those things are in place and then and then that sort of it just really there's a dangerous period which is created for young people and and for the person as well with the illness and it's like it's almost there's nothing can be done. Yeah. And the reality if someone's watching this or listening in regards to how it works is the person gets so unwell generally, where either the police are called, or there's the ambulances call, and then they're taken to the emergency room with everyone else, and then we've got broken arms or whatever they are. And then I've got to do a psych mental health assessment, even though they've got extensive history. And then if there's a bit available now Oh, I've got to then take them to the Yeah, it's a really, it's a process is wrong,

Lotti O'Dea: 40:04

it's completely wrong. And I guess I'm excited to say the in the Royal Commission like that they're, you know, wanting to change those things. But the cynic in me is kind of waiting for, particularly in the complex mental health space for it to kind of revert to the norm. I'm not holding my breath for there to be more tools made available for people or families in that situation. But I mean, I'm really excited to be proven wrong. I'm not, I'm cautiously optimistic about that those

Joel Kleber: 40:46

developments, and I think for us is, you know, three to four weeks out or whatever the timeframe was, you know, this person's over the edge, and you had no recourse and just told Are you just go do it, then you've got to deal with that stuff. If you're doing exams, or you're trying to do something, or you can't get to your practice or whatever, because you can't drive at that age or whatever. And it's just like, you know, you want the help, but you can't get it. Yeah. And that's, that's the reality of it. And you're right, hopefully, something changed. But that's just Victoria loans. Australia, and I don't know, what would you think would help in that situation? But so that three to four week period, what would you think, let's say young person, or cute or whatever, what could they do to help or what should be the scenario?

Lotti O'Dea: 41:26

I mean, I think in that environment, that is really weird. The caseworker or the kind of the social worker really can come into their own, because they are the people that have kind of the skills, the connections to services, to do things like not necessarily always doing a formal psych assessment, but they know the things that they need to be looking for. But that is when I feel like we should be able to call on the professional services to come in. And yeah, maybe they're still not at the kind of hospitalisation stage. But the thing, we want to avoid the hospitalisation stage. And I feel like there's things that people in those roles can help with. So even if it's things that aren't directly around the mental illness, like financial stability, like I don't know, travel, for the kids to school, things that can just lessen some of the other pressures that then kick off the mental illness as well. I think even doing things like that can massively help the person going through the distress, but definitely the family as well. And then I think there just needs to be access to treatment and services that for people in that stage of their mental illness, because like I say, we don't want them to get to the hospital stage, and it's awful. But it's just yet it's watching the slow car crash at the moment, and without that tool, or those kinds of connections in place

Joel Kleber: 43:00

are some great points and hopefully some changed about I want to talk about now is I think there's a lot less stigma of depression anxiety. However, with bipolar, schizophrenia, and delusional, and there's, there's these are still words that, you know, charities or people don't like using or don't even I don't think understand there's mental health, they will think they understand everything in mental health. But as we know, there's a lot more towards that. So what more do you think can be done for young people in the community to destigmatize those conditions? Because we know from I think it's bipolar, straight report, that 40% I think it's 43% of people who committed suicide in 2018 2019 had bipolar disorder, for example. And then schizophrenia was like another 10%. So you got more than half of the unfortunate people choosing in life in Australia, we have two conditions. Yet, I don't think we know that. So what more do you think? What what should be done to help destigmatize those two conditions and your mother's conditions? What can be done? What do you think?

Lotti O'Dea: 43:59

I mean, for me, what I would love to say is, for example, the young people at satellite just being everywhere, like them, sharing their stories, then being invited to share their stories. Because that's the best way to understand what those illnesses look like in practice is to talk with young people to hear, you know, yeah, it's really tough. But also, this is still my mom at the end of the day, and I love her and there's a million great things about her. And I think it's really easy for us to point at someone and be like, Oh, they're schizophrenic, and that equals bad mother. Whereas that's not the case. And I think also, I would love to see more conversations where there's people that have gone through, or still on their journey with their own men. to health challenges, and be talking with people that are in the families of those with mental health challenges, because I feel like sometimes the consumer and MACURA conversations happen in parallel. And it's kind of like we're never allowed to meet because God forbid, we disagree with one another. But I think it's really important that we disagree with one another, especially when it comes to things like involuntary treatment, we should be, you know, having a debate about it. And you can kind of come to understand a lot of those tricky and complex concepts or feelings until you hear them from people. So I think it's really, you can't really get past just that awareness raising that. You know, you know, those old shirts that were like, This is what a few minutes looks like. It's kind of like this is what a young person that has a parent with bipolar looks like, and there's a huge range. Yeah, and I think just, we have to get over that hump before we can kind of get anywhere else.

Joel Kleber: 46:10

Now with the programmes and satellite, he's a little of creative outlets. Yeah. So what's your mode? Talk more about why you use? Do the programmes a certain way you're doing? Oh, yeah. What do you find that what do you find that helps?

Lotti O'Dea: 46:21

Well, it's funny that you say that because I remember kind of looking at satellite when I was thinking about joining as a participant. And then also in the programme that I started in and looking at all this creative stuff, and me going, I'm not a creative person, I'm like your numbers go. I don't want to, like hold hands and create an interpretive dance about mental illness that strikes fear, am I. And so I was pretty sceptical, coming in, but I was like, Whatever, I'll give it a shot. How bad could this go? And, and, really, I think the magic of the creative work is that it means a you don't have to talk about mental health directly, which, particularly in the younger age groups, it's just not appropriate to like they've already been in lots of deep and meaningful and very serious conversations about this. We don't need to approach it from that view. And in fact, it's not really helpful. But the creative activities that we do, they can be about mental health. But in terms of, you know, what, am I good at? What what superhero would I be if I was a superhero? And yeah, recognising their strengths, and building their own mental resilience, but not necessarily in sitting them down and be like, Okay, so can you give me a list of your top five strengths and weaknesses, and then, you know, show, I guess, helping them to identify what's going well for them and their own mental well being, but also helping them to identify, like other things that are going on in their lives as well. As well as the fact that when you're doing something creative, you know, you're kind of doing it like shoulder to shoulder with another person. And because of satellite, it will always be another younger person that has at least one thing in common with you. And you can we see sort of, it's really that peer connection that opens people up to those bigger and sometimes heavy conversations as well. But creativity is kind of that, that gateway to letting those conversations happen. So I'm a conduit. And now as a facilitator, I'm actually leading some of the creative activities. So I've come from like my sceptical, scared Enos, of being a non creative to kind of recognising there's a real reason why it works and makes people feel comfortable, it gives them various outlets to communicate whatever they want to communicate. And it also just lets people try new things. And I think when you've been through kind of traumatic time, or just something, a long standing challenge, sometimes you just move into that Trooper mode where you're like, I just need to get this done. I need to get Manuel I need to look after mom. The freedom and the privilege of trying new things, is not always something that's there. And so this kind of space exists to help with that. And that helps you feel good as a person you're kind of filling your own cup

Joel Kleber: 49:41

can imagine I was gonna say cuz you're involved with the evidence side of this joint, maybe talk about some maybe numbers then also, what's some data that you know, that people want to be aware about who are watching this regarding children who are the parent with a mental illness and outcomes and all that sort of stuff?

Lotti O'Dea: 49:57

Yeah, well, I mean, We've got numbers about the problem, in terms of we know that 25% of people go like experienced some level of mental health challenge. And many of those people will be parents. So there's a huge amount of children out there that are in this situation, where we don't have as many numbers on or evidence on is, what the kind of outcomes are for young people when they do something like satellite. And so that's a gap that we've got at the moment. But it's also something that we're wanting to fill. So that's why I have the role that I have and supporting satellite to measure its impact and to communicate its impact. And we do things like we bring on universities, such as Monash, to support us in our evaluation of our activities, how we can get better. And that sort of evaluation is actually directed by like our Youth Advisory Council as well. So when we measure our impact, we want it to be useful for talking with government, but we don't want it to be kind of fully driven by the outcome, we bring in our young people to tell us this is what was meaningful to me. So peer connection, realising I'm not all alone. And we go great, that you know, you're the expert in this situation, then we get researchers and so on to figure out we useful ways to measure things like social connection,

Joel Kleber: 51:39

as I was gonna say, because it's always hard to You've almost got to measure some of them. I don't know how you do it, but like eight years old, right? You're not use old person instead light and you have an eight year person who's got no, any connection with any organisation wants to track their life, like, what was the level of education? Are they working? Youth ended after youth services where there was right, so what are what are the indicators? What do you actually measure? along the along the journey?

Lotti O'Dea: 52:05

Yeah, so we actually don't have that sort of longer today? No,

Joel Kleber: 52:09

will be hard, because it's like 10 years? Yes. A long time. And unfortunately, with governments on resume, you got to show stuff quick, unfortunately, for funding. Yeah, sometimes

Lotti O'Dea: 52:18

like, I mean, there's been really amazing work like in the Justice space, in relation to that kind of concept we're talking about, imagine, kind of one person, like, two people and like parent know, the same person in parallel universes. And they are doing that kind of work in injustice, for example. So if one, let's say a young person does a does a burglary, in one gets rehabilitative justice, and one gets kind of the typical juvie sort of approach? How does that sort of change their life? Pathways? But I think, partly, it's it's easier to do that and justice in a way, because there's fairly easy kind of outcomes or or bad outcomes to avoid, to look for, whereas in our space, a mental health still has that stigma around it. Not that justice doesn't that I guess we're competing against the fact that, for example, as an under 18 year old, I never would have been identified as a person that could go to satellite because my mum would immediately take that away. But also that we rely quite strongly on the kind of clinical outcomes at the moment to understand the experiences that young people have with this kind of experience. So you'll hear phrases like young people that have parents or carers with mental illness are twice as likely to have their own mental health challenges. And we, we agree that that's a really important thing. But for us, it's also like that, that is true, but they are also fiercely resilient people. And we would much rather kind of get a sense of, you know, how does that experience as a as a child in that situation or a young person, make you resilient prepare you for other kind of challenges that will come along in your life? And then how does something like satellite build on that resilience? How does it build a sense of community with other people, which I guess in in short, is having a more strengths based approach to it? The hard part about that is it's harder to measure and it's newer. It's easier to measure when someone's had a hospitalisation and then the cost of hospitalisation, it's harder to measure the, the, the change in resilience for a person and also the kind of monetized benefit of changing someone's

Joel Kleber: 55:01

I remember chatting to, Addy, who was it is another person or satellite and same thing, it was just I was trying to work out what we know logically like, right, this will, this is a positive thing, right. And like you know and understand you have to show stuff for governments and stuff, but they throw money at anything now these days without much stuff. But it's annoying because we know how much it would have helped. And we know the impact of you know, you know, firsthand the impact it has just trying to demonstrate that as a study or with numbers, or however you need to do it is very frustrating, because you can almost just have the stories of the kids or the young people who've done it, who just talk about it, then, like in front of a room of politicians or whoever was doing the funding. And to me personally, that's, that's that's the evidence, you know, you sort of need but it's, it's just really hard, because I kind of stand from your point of view, how hard it must be to try and put that on paper. Yeah. And how did you actually that was, you know, everyone probably logically knows that it's, it's doing all this stuff. Whereas to say that for the for the bureaucrats have appealed on the funding or whatever. It's just, it just seems like it's a very tough challenge that you've got got

Lotti O'Dea: 56:03

it is, I guess I've seen the other side of it, though, because I've worked within government and as a trained as an economist, as well. So I guess I've seen their perspective. In terms of, you know, you've got a research and development into child cancer, you've got programmes like satellite, but you've also got things like social housing, and all of those things can have can be preventative policy. And they're all kind of competing against one another. So one of the things we're doing to try to stand out in that argument, our argument in that environment, is to do what's called a social return on investment. And basically, that's, you know, what is the benefit that wider society kind of gets from something like satellite existing, compared to the cost of that to the funder. And I guess, you know, some people get really nervous when things get boiled down to dollar values. Again, my training makes me very nonchalant about that. I'm totally fine with that. But I'm fine with it. Because I guess I know how it's used. Like, it's not about the individual sort of dollars and cents. It's more about demonstrating, hey, if you do help a young person in this situation, you know, you're helping them in that moment. You're helping them, you know, for the rest of their lives. So you help with their resilience that's good in the immediate short term for getting through what they need to get through, but can also help with the other challenges that come up in their lives. And now actually, we're satellites at a point where some of the earliest people that went through their programmes, they're kind of Valmet, either in are at the cusp of sort of parenthood themselves, some of them. And so I think now is when we'll start to see some of that, you know, generational change as well, like, where we can help break the cycle. Yeah,

Joel Kleber: 58:18

I think that's important. Because yeah, as a cost from the economy, lucky to have someone who can be a better parent than maybe what they were just just makes everything, as you know, it just makes you, as you said, breaks the cycle. Yeah. And it makes makes life a lot easier for a lot of people. But it must have made you guys feel really good to be specifically mentioned in the mental health Royal Commission Report, Victoria, and they get that funding as well, which is fantastic for an organisation. Obviously, roses put us into it. If not, not much, you know, financial health, but to have that acknowledgement as well. I think first off, so what do you hope to do with that funding? Or, you know, how are you going to use that? Or what's the what's the plan?

Lotti O'Dea: 58:54

Yeah. I mean, firstly, yeah, it was incredible. I also think it's just amazing. The fact that someone like Rose could see this, a literal decade in advance of what feels like everyone else. She saw that this was an issue, she saw that more support was needed, and she made it happen.

Joel Kleber: 59:16

I think it's amazing. I think he had assigned to be so passionate about this, where they're just passionate about that issue, and to put all that 10 years of work into something with no expectation of any return, but to know that you're actually doing something whereas a lot of people say that and whatever. Yes, she's gone and done it and now to get that rewarded.

Lotti O'Dea: 59:34

Exactly. And it doesn't always happen. There's lots of people out there that do amazing things and don't get that recognition or funding. So it's yeah, it's incredible to be in that position with both of those things have occurred. And then yet in terms of going forward, it's really exciting times. We're inch short, expanding the programmes that we have so not just kind of doing more of what we've done before, but we're doing new things as well. So we've always done like a couple of regional workshops, because being out in the regions is extremely important to satellite, we know that kind of the quality and consistency of services can really drop off when you when you leave sort of metropolitan areas. And so now we're doing things like planning like a regional roadshow, where we can sort of consistently make our way around particular areas of Victoria to begin with, but we've got a plan for world domination. And yet, and then we're also broadening the kind of things that we can offer as well. So for that sort of 18, to 25, we've always had this thing we call youth pathways, which is, you know, you can come in to satellite sometimes to engage with things in relation to your situation in relation to mental health. But through youth pathways, you can also come in to give back in some way or to upskill in other ways. So we have things like, in relation to things like public speaking and relation to thinking about your career, including things in fact, you came to one of our workshops in relation to careers or thinking about how you might want to draw on your lived experience and in what you do, and the different shapes that that can take. And so we've we've had that in some shape, or form. But now what we're doing is, you know, broadening that to a younger age group as well, with with fun activities that are, you know, really flexible, and we make them work for the people that come across that alight. And then we've also introduced our Youth Advisory Council as well. So they started at the beginning of this year, and we're still kind of in that setup phase that as we get further along, they'll be giving us advice on all sorts of things from things like how can we make our website really speak to the people we want it to speak to, to things like finding opportunities for them to share their story or advocate for what they think should happen in the system, to, you know, linking them to opportunities to be trained in like peer work, for example. So it's a really exciting time for us to do more, but also for us to link to the other developments that are happening in the mental health sector, but also into other sectors, like the creative sector as well. And just yet, create those linkages for our young people. And then just watch them, grab it with both hands and move forward. It's awesome.

Joel Kleber: 1:02:52

Awesome. So what we'll do is we've probably gone for more than an hour and not as good. All this good. Probably, I'm gonna get kicked out the room. But where can people find out more about satellite? Why? What do they do?

Lotti O'Dea: 1:03:03

Yeah, so there's probably two good places to go. One is just to Google satellite Foundation. And you'll come across our website. And we're also pretty active on Facebook and on Instagram, as well. And on that you can kind of get a sense of who we are what we do. And really, if you've still got questions, whether you're a parent, a carer, a young person, or maybe a professional working in this kind of space, the best thing to do is really slick as an email, get on the phone with us. We're still, you know, we've grown, we've got plans for world domination. But we've still got that kind of the heart of the small organisation. And we're really good at making, you know, programmes flexible to what people need. So the best way for us to do that is to let us know what's on your mind. Learn a bit more about us, we'll learn a bit more about you. And then we can really do some cool stuff together.

Joel Kleber: 1:04:04

Sounds good. And I mean, check you guys out online. If you know someone refer him. That's probably one of the key things as well. But really, thanks for all your time and your insights today. Laurie, it's fantastic to go in depth conversation with you about your lived experience. And thank you for sharing so much. It's really important to be shared these stories and hopefully we can encourage more to do so because that's how we move forward. But thank you very much for coming on a live experience.

Lotti O'Dea: 1:04:25

Thank you very much, Joe. It's awesome.