Voice Over: This is a different brilliant an aspect podcast focusing on the strengths, interests and aspirations of the autistic community. Open, authentic and engaging conversations about autism made for autistic people, parents and carers of children on the autism spectrum. Welcome to a different brilliant.
Madeleine Jaine Lobsey (MJL): Hello and welcome to a different Brilliant Aspects podcast. I am not saying I am your host and I am joined today. I'm actually very excited. I'm already crying. I cry on these things because I'm going to get to spend time with Mel Spencer. And Mel is the co-founder and CEO of Different Journeys, and it is an organisation.
I'm going to say very simply, it's a lot more than this. But the organisation formed to combat loneliness, and also isolation that autistic people may experience. She co-founded it with Asian and I've been going since 2016. Mel, also, this is pretty cool. Was the recipient of the 2020 Victorian Women's Honour Roll and 2023 received an Order of Australia medal for your work.
Particularly what we're going to talk about today with carers. So welcome, Mel.
Mel Spencer OAM (MS): Thank you for having me.
MJL: It's very good to have you here. So I thought we should start with something pretty basic. Probably. This is going to be an education for me, too, I think. But let's start by trying to explain to people. Who is a carer? How do you get that title?
MS: It's a really interesting thing because a lot of people do find it offensive and they go, But I'm a parent and yes, you are a parent, right? But if you compare yourself to your neurotypical friends and the typical development age, suddenly there's a lot more work that you're doing. Yeah, that they're not. And that's the difference between being a parent and being a carer and identifying as a carer also opens up doors for support that might not, necessarily be there.
If you're just labelling yourself as a parent. So I'm actually both I've got obviously three children, and I'm both a parent and I'm a carer, and sometimes it's hard to mix between the two. And as I've gotten older, I've also had to learn, you know, that. What's a parenting role and what's a caring role? And how do I navigate both so that I also give them the dignity of respect, the dignity of because it's also something that I find really challenging to talk about.
The life of a carer, but also maintaining that my children are not burdens, my children are not difficult very much. And it's really, that we're.
MJL: Incapable, you know, of. Well, I don't know. I mean, they might have things that they do with, with capability, but they're not incapable as a human being.
MS: No, that's correct. And I don't want them to. He may speak and come back and go. I was such a burden. Right. They're not the problem. It's the society and the societal ways of doing things. That is the challenge that we're trying to break down. And if you're a parent, yes, there's going to be ebbs and flows in any parenting role, but you're not having to break down the doors in order to get your children to have the basic human rights.
And so that's where the and I use this analogy that interchange at Grace gave me where they've got a trajectory of a parenting, a neurotypical child, parenting a child with a disability, and the big gap in the middle that that's what a caring role is.
MJL: Well, I think I just had an epiphany. Oh, because I have never separated that for myself until you just said that. I am definitely a parent and a carer, and I've never had them as separate things. And the and the way I can explain how I could see it for myself as you were talking was, there are things I do a lot in my day that my husband doesn't do.
And he's a parent. Yes, but there are things I do that I can now say are specific to being a carer, that he doesn't. And and that doesn't mean I'm not a parent. So that's pretty blaming. Good smell to get that that early on.
MS: Because if you start looking at it right, do your friends with neurotypical children have to deal with paediatricians? I have to go into it. Strays or whatever you call them in different states. Do they have to be dealing with therapists and allied health? NDIS? Centrelink, right. Are they having to navigate all of these different services?
MJL: Schools support plans. Yeah. Employment. Accessibility. Yes. Yeah. It goes on and on. Not caring. No. Yeah.
MS: And and I.
MJL: Just so good because I'll often say when I it doesn't happen that often but when I'm like full you know and I feel like I just can't breathe for mentally being full as much as anything I go. But I have these other full time job working on this and this and this and this and these, all the things you just say.
MS: Yes, but if you look at it differently, we actually save the government $77 billion a year, annually.
MJL: You can't just drop that. We save them, what.
MS: $77 billion a year in all of the work we do? Because if we had to pay somebody to do all of the work we're doing navigating. I did our, a case study with a carer, and, I mean, I know her name, her, son is got high support needs, but I said, show me what the NDIS are providing you.
Yeah. And then let's look at the hours that you're not, getting any support. Yeah. And I worked that if she was being paid just a Monday to Friday, right, her income would be in excess of 600,000. Yet she's living on Centrelink welfare because she can't work, and individually because her child's 2 to 1 at in the community.
MJL: So individually so 2 to 1 is two support workers to their person being able to access community.
MS: Yes. Yeah. So she's individually saving the government $1 million a year yet she's got no superannuation. She you know all of those things online. So you start looking at all of the extra things we do now. If we were paying a support worker on NDIS rates to in forms to go to meetings to navigate all of those things, and we would charging that's why the government is suddenly like, oh, we're going to support us because we actually are doing a lot to to save their money.
MJL: Okay, I am now very fired up. Yeah. And upset and outraged.
MS: And that's why I've got a real passion this year. When the census comes out. Yeah, that we actually all tick the caring box that we acknowledge that we.
MJL: Care is very good.
MS: Because how the government allocate their money is through census. And if we actually showing that there's more of us out there caring, then more money will be allocated particularly, you know, for counselling, for basic support, help.
MJL: It also, having a million epiphanies. Okay. The other thing that I just saw was I'm so guilty about a lot of things, guilty about whether I get in the eyes support for my children or not. When some people dying or whether I receive, like, the most tiniest, tiniest family allowance or, or any kind of government money, I'm like, oh, am I really quite on quite that bad?
Do I really need it compared to other people? But like, I'm 3 million people. I've got three people that I'm caring for. So that's myself.
MS: Yes. Right. And then if you think about this in a different way. Yeah. Right. Who's caring for, you know.
MJL: Well, my husband's really great, but no one.
MS: And then I'll challenge you as a carer, you know, and it's something that we use all the time. So what supports are you accessing to help you in your caring role?
MJL: None.
MS: Did you know there's free counselling?
MJL: No.
MS: Right. Did you know that there's packages available across the whole country? For short term help, for things like domestic support, maybe taking your child out or whatever it is that you need. It's supposed to be flexibly tailored and individual. And some technology packages as well.
MJL: Not so. Okay. And who is that through.
MS: That one, through the federal government. That's through Carrie Gateway. Yeah, right. Each state then has its own. But I'm just kind of giving you the national one because there's no point breaking it down into. And so we as so my team, 100% of it's lived experience. And we also have to access the services ourselves so that we can then go and tell someone what it's like, because that's the greatest, validation isn't it?
Yeah. If we've used it and we can tell you what was good and what was not good.
MJL: Or had a support for just applying. Like I noticed myself, as you say, that I go, that's amazing. And then I go, and it's another form I'm going to have to fill in another thing.
MS: Body double.
So often, you know, it's body doubling. Yes. So often what it takes is say it's you and I. Yeah. And we're having a conversation and I want you to apply for Centrelink or for Carer's Allowance for your children. And the forms are to match. So we sit together and I'm sitting next to you. You're filling the forms that I'm helping you fill the forms out.
But it's getting done because someone's giving it attention, you know, distracted by anything else. When modelling to you about how to fill these forms out, even though they're asking you the same question 20 different times. And, you know, we can also then feel a sense of success when we finish that.
MJL: I'm also thinking about my kids as you're talking, right?
MS: Are they on the day of space?
MJL: I don't know what that is.
MS: Disability support pensions?
MJL: No.
MS: They have a 16.
MJL: Not yet. Almost in a.
MS: Multi. That's what we need to look at.
MJL: Yeah. But I'm thinking about so that's another whole question I've got. But I'm thinking about all the stuff they do for each other that's actually caring roles.
MS: There's also young carers and it's something that you've probably hit a big passion topic of mine. Yeah. Because it's not just young carers can be anybody and they've actually done a big survey now where I think it's 50% of young carers also have a disability. Yeah. Themselves. And it's stepping up and they're going that extra mile because they see, you know, they're actually getting modelling I guess, from parents watching what they do.
But there's so much help and support out there. Now again with equipment for school, maybe getting to school if you can't get to school, there's other supports. They've got online tutoring. There's so many things now that are available to support you, and there's a big push in the education system to acknowledge young carers, and getting them.
MJL: And is that a Victorian thing or is that a national thing.
MS: That's a really I know it's I know there's a big push in Victoria. Right. But, if you ask Maddie from Little Dream as she's been pushing across the country,
MJL: I, this is just like opening up, I can't I base a can of words and possibility, you know, like it's both those things at the same time. But I think for people listening, maybe they are not having as many epiphanies as me. But I do think it's really important for us to stop and look at this thing called carer and caring, which I've even had wrapped up in things like, you know, the patriarchy or misogyny and stuff like that, but that doesn't give me any power.
It doesn't provide anything. But now that you're saying carer as a distinct role, I'm going, okay, well, I could if it's a role I can look at it really differently.
MS: Yes, yes. And it also helps. I don't know about you, but you know, when I'm hitting burnout, right? And I'm starting to recognise I'm hitting burnout, I actually give myself a bit of self-compassion. So instead of being really harsh on myself, right. Because I'm a failure, I'm no good. You know, all those things in the past. Now I look at it and go, I'm at capacity.
I'm doing all of these things. Okay. What is it I need to do to replenish, to come back and face the next day? And that could be sometimes it's doing nothing. Putting my head, you know, lying down in bed in my pyjamas, having a pyjama day. Another time it could be actually going and sitting with some other carers and listening to them to go, you know what?
I'm not alone. These things that I'm thinking about, quite common. You know, and, and then getting some tips and tricks in advance. But again, it, it is that self-compassion element that often we forget and the other be right, that we forget to do is celebrate. Yes, I got my kids to school today. Bloody fantastic. They might have gone in their pyjamas.
Hey kids, I got them there, right? Oh, I've managed to cook dinner tonight instead of just getting cereal out. You know, all of these things that we, other people take for granted. But for us, milestones in you know, it comes back to when they talk about, you know, in the journey of parenting an autistic child and you're expecting all these milestones that don't happen when everyone else happened.
So we need to come back and celebrate. They left the house today, right? Yeah. And that's a celebration. They did something different. They overcame a challenge there for other people. It's just run of the mill. But for us it's major. And and sometimes it's finding someone to celebrate that with to that guy. So yeah this is really important.
MJL: It's it's so important I mean I even had a thing recently. I know that there are a lot of changes happening with the NDIS, and people are living with a lot of threat of their support being taken away. But, I, I'm not going to give all the details, but for nearly a year I've been advocating for something and I had a win like we won.
And I was just like, so ecstatic, exhausted and ecstatic. And I couldn't even explain to my husband or anyone I knew how phenomenal it was that we'd had that win like that were like, that's great. But I'm like, no, you don't get out, right? This is. And if I could have been with someone like you, you would have gotten that completely.
MS: Yes.
MJL: Yeah.
MS: Yes. And having that safe, safe space to connect. And what's really interesting just for so we run care carers, couples here in Melbourne. And one of the things that was recently established, you know, some of the carers, you know, we listen to the community. So we've now got wristbands when you come in. Right. Red, don't talk to me.
I've just made it here. I need that to be honoured. Right. Yeah. Purple. I don't want to talk about my caring role. Yeah, I'm here to talk about. You know what concert you went to, you know? Yeah. And then the other one is. Yeah. Talk to me about anything. But it's really important to acknowledge also.
Yes, I'm a carer, but I'm many other things. Right. And so that's only a small part. I mean, it's a big part, but when I start looking, you know, I'm a mother, I'm a friend. You know, I'm a reader. You know, you start looking at what your hobbies are because we lose our identity, because we're so busy trying to fight for basic human rights for our kids.
MJL: Man. Yeah, you got to let that one sink, don't you? Because it really is like that. We're talking basic. Yeah, yeah. And I think I know just that I say words like advocacy advocate and I really chuck it around. But the amount of energy or time, you know, emotional energy that it takes to be doing.
MS: Masking.
MJL: Masking, so much masking, yeah. It's a lot.
MS: Yeah. So they don't get a lot of other parents don't keep getting called into the teachers. You know, at the end of the day to talk about what your child did wrong. And I used to say, I wish a teacher, even if I had to send me an email. I had a great day with your child today.
I really enjoyed this about them right? Because I could share that someone else was enjoying my child.
MJL: And there's nothing like and I think, I think this is a general thing that most parents would say, but I feel like there's a lot more, I don't know, white gravitas or juice. When you have a kid that you know is autistic or whatever, dealing with life as a person with disability, and then someone else gets to say who they really are for a moment, that there is nothing like it.
MS: No, there's not. And it's a beautiful thing. And it's still I still get shivers when, you know, I think about some of those first moments where people have just really, genuinely accepted my child. One of my children. Yeah.
MJL: He. Yeah. Or when I have that freedom to fully be themselves, you know, with someone other than you is like, it's just there's nothing like it. No, I don't I mean, I'm not even celebrating that as something to celebrate.
MS: No, because we just keep striding on to the next thing. Yeah. And we actually forget, stop and breathe. And the other kids, we're going to make mistakes. My children will be able to tell you all the mistakes. They probably still remember them and list them in great detail.
MJL: Yeah. But.
MS: We also need to model to our kids what happens when we make mistakes. Yeah, right. And how we go about doing it and how we repair, you know, if we've made a mistake or if we just ignore it because is that is making that mistake that big a deal? No one's going to die, you know? Yeah.
I just forgot to go to an appointment. Okay. Yeah, I've got to pay for that. It's a bit hurting my pocket, but again, how big a deal is it in the whole scheme of things? And it's about reframing that to to give yourself permission. I'm sorry. I've completely gone.
MJL: I'm just. No, I'm just thinking of a million things. So, I'm trying to think, you know, I feel like this is just day to day life for us, right? But everybody's going to have a unique experience, and you spend a lot of time with a lot of different carers who may also have other parts that make up who they are, like, you know, they may, be First Nations or that could be part of queer community, or they could be part of many other communities.
MS: Even disability like disability history.
MJL: That's right. So it's so that they could be all sorts of things that make up the whole experience of life. But when you've dealt with so many different people that are all in that, I guess, carer role, what are some of the commonalities of what you notice that they deal with?
MS: I'm going to start in a different perspective. Yeah, because when I first recognised myself as a carer and I started going to carer events, I was sitting with people who were caring for their ageing parents or their ageing partner. And, you know, I was dealing with behavioural issues and I couldn't talk to any of them because there was nothing, you know, there was a commonality.
Right. And so I think we have to be. And so that part of the reason we started different journeys was because we needed support, but we needed support with people who understood what we were going through. Yeah, not just all lumped together because we're carers. And so I think that was there is a lot of commonality across all caring, genres.
We also need to go and find those that meet our needs. And it was something that we've become really passionate about. But some of the commonality themes is exhaustion. Yeah. Service system navigation is probably the biggest, right? Yeah. And having to learn wanky languages, you know, call it wanky words, but government forms.
MJL: Yeah a.
MS: Wanky language. And how do you.
MJL: Especially if you're neurodivergent yourself. Like, I just can't even understand that half the time.
MS: Well, English or.
MJL: English.
MS: Language yet other bodies. Way to go for help because no one gives you. They suddenly the paediatrician says, oh, he's in diagnosis of autism, right? What do I do now? Where do I go? No one kind of easily gives you that information. And and you're expecting it. And so then you go home and you're in this wave of grief and research and all of these different things all compounded together, and you think you're really alone.
Yeah, right. And it is such a common theme. And then you become so lost in just trying to survive that you've actually forgotten to find joy and find joy with your own children, too.
MJL: Yeah. I just thought, too, that prevailing experience of being trapped, like when if you don't know that there's something else available, the prevailing experience of being trapped and that this is it, this is as best as life is ever going to get, like basically, now suck it up and find a way rather than that. I mean, I love that it's called Different Journeys because it is a journey and it's different.
MS: You're in and I started with completely different backgrounds and completely different reasons. She wanted her son to make friends. I wanted my daughter to get out of the house. You know, we both achieved our objectives, but they weren't the same.
MJL: Yeah, yeah. And the moment you start finding community, that's one thing. And then seeing all the different things available to you, then perspective shifts. And when you perspective shifts, then you start to say, okay, actually there is a life that is beyond what I'm experiencing right now, which I can get would give you the space to have the joy in the way that it needs to.
MS: Yes. And we do, autism family camps with, interchange and the first family camp. I've said, oh, no, we're not taking any little kids. We're taking teenagers and adults. And the CEO says to me, no, we're taking little kids. And I said, but why? He said, because those families have never seen an autistic teenager role in autistic adult.
Right. And they need to have hope. Anyway, I'm thinking radio and at the camp I say this group, these group of women crying. And I said, what's going on? What's happened? They said, no, no, nothing. We've now got hope for the first time for the future. And, you know, I remember hearing Chris Fanny speak many, many years ago, and he was talking about his, journey at, university and how in order to pass this thesis, he turned it into a Harry Potter, novel, because that was his obsession at the time.
And I walked away from that for the first time, feeling that there was going to be heights for my children. Right. And listening to him, you know, talk about his journey, the the pros and the cons, but I went there going to be okay, you know, and so finding those good role models, both for yourself and for your children is really important.
And we sometimes undervalue the importance of that.
MJL: So do. And then we say things like, well, you know, I'm not as bad as that person or my story. You know, it's just the same as everyone else. Who cares if I say it? But the more we communicate with one another, the more we share, stories. I feel like it's the ultimate antidote to whatever we're dealing with.
MS: Yes, and we can unmask and just by ourselves in an environment, you know, and be accepted for who we are. Not having to put on a facade or pretend everything's okay because you see people's Facebook pages and they only post good stories, don't they? Yeah, right. They don't tell you when things are hard, you know, and they're not acknowledging all of that.
But so that's all you're saying.
MJL: And if and it happens in the tiny stuff. I just had a flashback just then. So my youngest likes to wear a blanket over them all the time. And, and I skip one of the ways that they, you know, regulate is I skip. And so they're often skipping around in a blanket. And I used to and initially I would try and stop at publicly I would go, please don't do that.
Or can you just take the blanket off for a minute? Yes. You know, like I would try and do something about that. And I had this sense of shame and shame that I was doing that to her, but also that about people's opinions of whatever they thought about what was going on, and, and fear for what other people would think about her, you know, like, so I was dealing with all of that.
And then I ended up talking to another mum about something completely different. But I said this one thing, they said, oh, I had at some point I just had to stop apologising because what was I really apologising for? And I said that one thing and I was like utterly altered forever and it ended it. Like I ended apologising.
I ended any kind of behaviour modification. I ended even fearing what other people would think about my child because they were going to think whatever they thought, no matter what I did. But it was that one person saying that one thing really flippantly, that altered my life.
MS: Through their own lived experience.
MJL: Through their own lived experience.
MS: Yes, that's where I've learnt most of my, greatest information.
MJL: Yeah, yeah, yeah. So, I guess one of the things we could talk about, I'm probably. Could I have another epiphany? How do you know if you've been to male?
MS: Oh, my God, do you know that's actually the hardest question? Yeah. And it's something I've done lots of therapy about. Right. And even, you know, recognising what's Caribbean at and what's autistic burnout. Right. Because they're different. Yeah. Right. But they often smash into each other. Yeah. And I remember going to the and then you've got, you know, for me personally then you've got menopause, and premenopausal all that kind of stuff with sisters.
MJL: Anyway. Carry on.
MS: So throwing all of that into the mix and you're trying to survive in a very complicated world that doesn't, necessarily agree with everything we think should happen. Yeah. And so that burnout is real and, and that burnout is, sometimes that's what we're finding it, that it's a real common theme in carers to fill out another form.
Right. And that's actually a barrier. And then, you know, the, the questions that they ask and you neurodivergent and I go, I don't understand what that question means. So I just stop all surveys and not neurodivergent friendly. Right. And, so now I just don't even bother filling surveys out because I can't cater to me. I keep saying I want, a little box that can record and I can talk to it.
Because people also expect that you can write really well. I can't write really well. And the other bit for me and my greatest bit of permission was the word outsource. Right? So as a carer, I can't do it all. I cannot be everything that everyone needs. But in order to be the best I can be, I had to learn to outsource.
And when I say outsource, it had to be letting other people come and help. And.
MJL: Big thing is, and, yeah.
MS: It is it could be okay getting someone to come in and clean your house. But what that did was enable me to take my children to appointments, because I knew that was one less thing I had to do. I have children with OCD who've got germ phobic. I get my, sheets and towels every week, picked up, wash and bought back.
Right. I've had to stop myself that I'm not lazy, that I'm not a bad person because that difference in having all of that done, it's come back folded. I do have to put it back in the cupboard and we there with something, you know, to do that. Yeah. But that as well was recognising I needed help.
MJL: Yeah, I had to get over embarrassment for that. So that same thing, it, for me, it was like I wanted the help. But I also had to get over that. People were going to come into my house and they were going to say what I'm not dealing with because I'm dealing with everything else. Yes. And and that was another thing I had to get over to be able to allow myself to be supported.
MS: Oh, yes. I have a declutter off. Right? That comes in. In the first time I was so embarrassed. She's made me get rid of half of my house.
MJL: I don't know if I like it, I like I go on. Yeah.
MS: And for me, and then when my psychologist goes, no, anyone who's got ADHD needs a declutter in their life. And I went, oh my God, right. You know, even those little bits of permission.
MJL: Yes. Yeah, that's really important.
MS: There's always going to be worse people off than you. Yeah. Right. And you can pay is that's I don't know about you and it's something I hate but I grew up with. Oh there's people starving in Africa. You're not eating all your food. But there is always going to be worse people off than you. But that doesn't mean you're not entitled or don't deserve anything because you're only as good as what you know.
It's not better, it's not worse. It's just different. And that's the analogy I've come across. And I would not be able to be sitting here today having these conversations if I hadn't have accepted help.
MJL: Yeah, I think this is probably one of the most important conversations will ever have on this podcast, because I imagine that majority of listeners are carers that are listening to this podcast. So maybe if we can spend a little bit of time trying to give them the best possible advice you can give, you know, you know, what kind of advice, what should they do?
What can they access? Or you know, how will they know when they're at a point of needing support? So I imagine every carer out in Australia and you can talk to the Mil. What's your best advice.
MS: So first and foremost, from the minute you, find out that you have a child who is autistic that defines you as a carer, all right. And by defining yourself as a carer opens up doors to support, but that you wouldn't have known were possible. And that could be people applying just for the Carer's Allowance. You know, if you're earning under 250,000 combined, there's $148 or something every fortnight that comes into your bank account, right, which will help with extra things.
It also gives the person your caring for a healthcare card. So if they're on medication, it's cheaper. You know, there's sometimes I think one of the greatest pieces of advice that was ever given to me was you have options, because often you don't feel you do, but sometimes those options are even to do. You've got an option to do nothing and have life as it is, but you've also got an option to be involved and try and make changes.
But that's your decision. And sometimes you just don't feel at ease and connect in with, p groups that could be online, that could be, in person, that could be and and it doesn't mean you have to go and be so. And the first, p support group, I went to a carers support. It took me 12 months to go back to another one, because it was so bad, because I was hearing these people's horrific stories and I went, oh, I can't do this.
So it doesn't mean the first one you go to is going to be the right one for you. I think is, well, you need to give yourself permission that you don't have to be involved in everything, you know, and, and, and what does participation look like? Not just for your children, but for you. You might be someone who doesn't like going out all the time, and that's okay.
So I think one, there's lots of support available should you choose to do it. Even at the school, you can form a little group, you know, so you can do it yourself. You know, it necessary and it can be really informal. It doesn't even need to be a formalised thing. But knowing that there's that help out there, the local council, I've always got, you know, one of the things across the municipal Councils Association is they have to support carers.
So what's your local council doing?
MJL: Right. That's good too. You know, I know either it'll be there or it's not. And maybe you can get a bit of funding to get a little group going.
MS: Absolutely. Yeah. You know, so there's lots of things. And one of the things that I became really passionate about, the series supporting carers in the workplace, because if you think about it, all of the services are only open between business hours. So if you're trying to hold down a job and doing in caring responsibilities, then adding you're a sandwich carer because you might be caring for, ageing parents as well.
Where do you get time to breathe?
MJL: Right? I don't know, Mel.
MS: It's full on the ages your kids are now. Yeah, it is full on. Yeah, but my children have all got licences now, so it does look a bit better. And it takes the pressure off, but it's very intense at your stage. Right. And it doesn't feel like there's any apps. And the other bit for me personally is find that is positive role models.
And it is something my daughter, she was diagnosed ten and she went completely off the rails for many years. And it was it was hell. And what she tells me is the only other autistic person she knew was a brother she couldn't relate to. She did not know another autistic person. So it's like that. Is carers true?
Yeah. If you don't know another carer in a similar boat, then you're not going to be able to get any help.
MJL: Yeah, well here's what I'm hearing. You gave really good advice. And one is there are choices and there are options. The other one I heard is permission like permission to do it your way. Permission to be the way that you are, you know, giving yourself permission is, I guess, what I would say. And then the other one is, I don't know how else to say this, but like it or lump it, it's going to start with communicating and and start with having to tell at least someone that you're looking for support and we know that 1 in 5 Australians are people with disability.
We know that approximately 1 in 40 Australians are autistic. So the moment you open your mouths.
MS: 1 in 9 of carers.
MJL: You're going to find someone, someone's going to know someone and if it's not them, it's their aunty or their brother or that it's someone and and it will just take opening your mouth.
MS: Yes. And that takes courage and diversity. Right. But suddenly it also brings a whole different light to your world. You know, I remember, ringing a helpline many years ago and she kept asking me all these questions, and I'm thinking, strange woman. What she actually unpacked was a family in crisis who didn't know they're in crisis. And she was the one that told me that I needed to go and get help, and I needed to learn to accept help.
And I didn't have to do it all alone, because the one thing that she stayed with me and it still to this day, if I combust, what happens? The whole family will be in disarray and no one will. You know, I say, if I die tomorrow, my husband would have no idea how to manage NDIS plans. You know, and so that became that.
I don't like that analogy about the oxygen mask, but it is right. If we're not able to look after ourselves, how we then going to look after everybody else, because if we can bust, it'll be a disaster. But not only that, we actually also have a really big gift we can pass on to our children. And that is the modelling of self-care.
MJL: Oh man, are you going to make me cry? Well, I am not at all surprised that you received an Order of Australia medal for the work that you do. And, Victoria is very lucky to have different journeys. But people across Australia, there are other organisations and you can start with carers. Network is probably a really good one.
Yep. Oh. Carers.
MS: Gateway care, gateway carers. Yeah. Yeah. If you go on to their pages. Yeah. If you're employed they've actually got some good resources if you're in employment.
MJL: Yeah. But we thank you for every single thing you've done for every person. And, thank you for this conversation particularly. And thank you for being on the podcast today.
MS: Thank you for having me. And thank you for being raising awareness.
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