Sept. 13, 2020

12. Prakash Radhakrishnan | Caretaking as a Sibling

This week we spoke with Prakash Radhakrishnan, Creator of the award-winning  "This... Is... Me" Docudrama. A film about being a sibling and about how life can be different as a sibling. We speak about the "caretaker" role of a sibling as well as the loneliness that can come with that. Prakash spoke some wonderful words of wisdom for us this week and was such an inspiration. Please take a moment to watch This... Is... Me link below.

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Welcome back folks. Hey Kristin, what do we have for this week? Hey everyone. Welcome back this week. We have a fantastic guest for all of you to listen to. It's a really long episode, but we really want you to get to it and listen to it. So we won't take up too much of your time. This week's episode was a really inspirational guest.

[00:00:21] He has a fantastic award-winning docu-drama out and his words of inspiration really meant a lot to us. Before, and after we got to speak with him, him and Eddie were two peas in a pod this week. Um, he is the Eddie from across the pond. So remember if you love this episode and the show to please leave a review, it means a lot to us and share this episode with a friend,

Well, welcome everybody back. Welcome per cache. We have today as a guest, and we're really excited about having this guest on. We have Prekash Radha Krishnan. Welcome per cache. Thank you. Thank you for having me for cash is the creator of this is me.

[00:01:49] Docu-drama it's a documentary. Um, it's up on YouTube. You can find it there. We really. Really loved it. Eddie was moved to tears pretty quickly. It was awesome. You got it? No, he was. I mean, it is a kind of. Just my natural intuition, I watching the movie and, you know, as it progressed, I was like, I know exactly where we're going.

[00:02:16] And so it's, it is very relatable. Um, and for me in the way that it was presented is definitely very relatable. Yeah. Generally. Yep. So, um, amazing, powerful. Um, that was, that was, it was awesome. So, um, but of course, before we get into, you know, the big, um, big thing that we have our guests for, we do like to get to know you a little personally.

[00:02:45] Um, so before we get into that, um, we like to hear you to tell us about your story. Um, so for starters, where are you from? So I am born and raised in London, UK. Great Britain. As some people are referred to. Yeah, honestly, I'm 34 and I still struggle with that. Is it London or great Britain United Kingdom?

[00:03:12] See, I don't even know. I don't even know. Just say London. It's sweet. So you're from, you're from London. Yeah. So I'm actually just from a small village outside of London, closer to . Sort of lucky. There's no planes flying overhead at the moment. I'll let you know to have, uh, so yeah, I was born here and I'm not going to say how many years ago, but I'd say a while ago, uh, raised in the UK or my, my parents are of Indian origin, mothers from Malaysia.

[00:03:49] That's from India. I settled here in the UK. So I have bosses, uh, I would say second generation, uh, Asian within the UK. And then that's pretty much as the story progressed. So I've got three elder siblings. Uh, two of them have got special needs. One is my sister and one is my twin brother. Oh, he takes every opportunity, like every twin to remind me that he is the owner of the two twins.

[00:04:18] And does it get annoying? Absolutely. Every time that I help sibling love the sibling love. And then I've got another older brother, uh, similar to myself, campaigning and working towards equality and inclusion of, of disabilities and special needs of all sorts. So you are the baby of the family. I would like to think so I got married and then my wife took over that mental piece.

[00:04:46] I'm trying to get back, but I keep getting told that's never going to happen. Never say never. Right. These are ways to be great, but I know, but I believe it's a topic for another day. And you said your mother and your brother also there, they work in the disability advocacy community as well. Yeah. Uh, so my brother mainly, uh, He runs a freight forwarding company, but he also does this on the site, similar to myself.

[00:05:13] Mom's a retired nurse. So she's got a background in the medical background, uh, which is dangerous to have someone who knows the medical background, but also. Is mommy best, so to speak. Yeah. So going into a hospital with someone who knows medical background is, is grateful me, right? There's your drill.

[00:05:36] Let's, let's take care of it, but yeah, and that's pretty much the glue that holds everyone sane together keeps maintaining general normality within the house. There's singing random jokes and random sports for Nike, Ella that he comes up with. I seem to find that like, um, that in this community are either moms that were nurses that then just become these like powerhouse advocates, or they become nurses because they're already kind of a nurse in a way.

[00:06:11] So they just go into the nursing field. Because why not? Right. You're a nurse on a regular basis sometimes. I guess the, the maternal in six of them is already that, uh, I can only imagine what it may be. I guess our only comparison would be the paternal instincts of what a father would do when, when he becomes a father.

[00:06:38] Okay. Some of the protection of the child. So from a mother's point of view, it's already there and to. Expand on it when you're already on us. Yeah. Good. No need to take it to a whole new level. And that's definitely what I've seen during. During the professional career, as well as post retirement as well, that mental bees constantly go and they make sure you're staying ahead of the times from a medical point of view to obviously help facilitate the Karen and needs of my two siblings, which we'll go into.

[00:07:12] Yeah. Yeah. So tell us a little bit about that. Like, you know, growing up, what was home like with two siblings with special needs disabilities? I think for me it was more a normality because again, I was born into it. So it's not as though I knew anything different, but yeah, the first couple of years, or some of the first moments or memories that I had, I've got, it's thinking, why is he 30?

[00:07:40] Noisy. Why is he very practice? He's always giggling. He's always laughing, which I was nothing wrong with it. But then obviously later on the more I grew, the more I understood that this isn't the status quo. This is a siblings outside of my network. Maybe when I go to school, they're all talking about going away for the weekend, doing things with their brothers, sisters.

[00:08:02] So is there another. But all I could think about is, hang on, I've got to go home and take care of my brother and sister, rather than going say for a birthday party or a wedding or a function, or even to the movie, something as simple as that. Yeah. Yeah. And it for my sister, the, my interaction. Yeah. My sister wasn't that much in the beginning, but she was in a kale in the beginning.

[00:08:28] Yes. That I remember Joe knew. Uh, between myself and my sister, that would be, uh, uh, about six years. Pretty, a pretty big gap. Yeah. Yeah. I was thinking small

[00:08:50] about six years. Don't quote me on that. I'm sure. I'm probably getting mom on my problems saying you should know this age. Yeah. Don't worry. I don't even get it right with my own kids. Yeah. So yeah, with my sister, it was. Okay, we'll go for the weekend. Pick her up, bring up back home. So she'd be home for the weekend and then we'll take it back.

[00:09:12] So it was a fully functional care home at the time because obviously my parents had to work. They obviously had to support us, uh, three other kids at home. So at the time that was the best option for them. And later on, as services started cutting back, uh, which we're all very used to within the special needs and disability community.

[00:09:37] Uh, she then moved back home and she's been home ever since. I would say she been home for about 20 years on and off. Um, It just made sense that she's home now, why on or keeper or them? So now we maintain having both my brother, my twin brother, and my sister at home while the rest of us around the family, constantly running around to make sure that their needs solely match first in order for us to then go on and do what we need to for our own professional growth, as well as a life, a life once.

[00:10:14] Right. That's tremendous. And we talked about that too, like having that support system or having the ability to have, you know, a community, a small community in a nuclear family like yourself, um, where you have all of that ability to have that. Support, um, which is huge because we talked about that all the time.

[00:10:35] Um, when you don't, when you have the single moms who are battling that, it's the weight of having to tend to your child and, you know, it's just, it's immense. And I can imagine. Um, but that, I mean, that is fortunate that you have that situation. Um, and it's great for your siblings. I'm sure to be home in that life where, you know, it sounds like you guys are awesome and you guys have a great relationship.

[00:10:59] So, um, that's, you know, really fortunate. Well, and I think too, it speaks to the fact that like, as we know that, like, even with that support system, it probably. And, and, you know, tell us if I'm wrong, but like, it might, it must still get lonely as a caregiver, even with that support stuff. Absolutely. I completely agree.

[00:11:20] I mean, it's also, it comes down to time management as well. Right. As much as you're there to take care of them. It's for their needs and we all will do that. That's so important. You need to step back and have a break yourself because it can get emotionally tiring. It can get physically tiring some days if they don't sleep throughout the night or interrupted sleep.

[00:11:41] Now, we all struggle with, with not that great asleep on, on a good night, but if you have this extra responsibility, when do you mentally switch off? Because you're thinking, have I done this? Have I done that? Because. The breakfast being prepped for the morning, or is there milk in the fridge? So small little things you need to then try and also self in a way to step back and say, well, it's fine.

[00:12:06] Whatever's going to happen is going to happen. They're safe. They're well, they're in a warm environment and a nurturing environment. That's all that needs to be. And. Yeah. At the beginning, we never had any family in the UK, external family. So cousins, aunts, and uncles. So Almay was, became our close confidence that would help, um, my parents as in when needed, if they felt sometimes they would randomly drop off food packages, which was great.

[00:12:34] Uh, and other times it would be maybe a bit too much food, but again, it's, it's knowing that you have that support structure. In lots of different ways. And then as, and when, uh, some family abroad moved to the UK, it just bolstered that support network that I can now take that break, or mum can then have a break or dad can now go and have a break because they're all the people just step in.

[00:13:00] And even if they're not necessary or at least stepping in that, checking it and just saying, look everything okay. And just having those general kid chats, which, which everyone enjoys rather than. How has mural, how has  just talking about, Oh, do you see the news? Well, this is happening in this country or juicy this movie to just kind of reset everything.

[00:13:25] So it helps mentally switch off as well. And just makes us all feel as though we're part of that wider community, rather than we're dealing with special needs or lenders. It goes with it being a caregiver. We were only a cabin cabin. So there's lots of different facets to it, as I'm sure you already know, being brought up a really good point that gets forgotten.

[00:13:48] And I don't know if this is a cultural difference or, you know, something that's specific here to America that I notice a lot that gets forgotten. And here in America, there's a culture of, you know, I'm not gonna, I'm gonna mind my own business. You're doing your thing. I'm not gonna bother you in very often.

[00:14:11] And to flip the coin on that, there's also a culture of, I've got this I'm I'm on my own. I'm independent. I'm strong. I'm doing this. So you don't reach out your hand for. Asking you, you don't communicate when someone won't say, Hey, I'm going to drop off a meal. Hey, I'm going to check in on you. Hey, I'm going to come over and let's chat about anything that's going on.

[00:14:35] It just doesn't happen. So that Colt, that community doesn't necessarily get built here, but there's that social media community. And that's it. But it's just, it's so almost it's more lonely because you're watching everybody's great life pass by. Yeah. And you're like, Oh, I shared this. I liked that. But the actual physical community doesn't really happen here.

[00:15:00] And I think that it should much more, you know, we talk about it. If someone passes away, someone starts a meal train or, and that happens occasionally if it's a really tragic something or, but other than that, you just don't check in on people. Know exactly. There's two, two opposite ends of the spectrum, which constantly happen on a regular basis, but it's just knowing that someone is that to be able to check in if spoken a lot about it over the last few months in the news with, with the pandemic, that's going in, just check in and have these.

[00:15:37] These conversations, but is it actually genuinely there? Sometimes it's not. And I guess from a caregiver's point of view, we, we find it difficult to ask for help because we're so used to having a finger on the pulse that we need to get things done. It's almost regimental. Military style. Bam, bam, bam. This time this has to happen.

[00:15:59] There's there's no leeway of, okay. We'll do it in 10, 15 minutes. No, it has to be done now. It has to be not no, and that just becomes a habit and as much as there's nothing wrong with it. It doesn't allow that room to nurture yourself and to be able to grow. Sometimes, sometimes it can be an inhibition.

[00:16:18] And within that, we struggle to ask for that help because we feel someone's coming into help. Are they going to be able to maintain the same routine and schedule. That we have built up because naturally, uh, anyone with some sort of intellectual or physical disability has a certain routine they want to maintain.

[00:16:38] Now, if you're a caregiver, especially a family member as a caregiver, my experience you're more, uh, You must stop to that routine. And even two or three minutes here on the it's it's as though volcano are up to them or holiday, you gone do these things like actually you can, it's fine. It's still going to get done, but probably not in the same way you want it done, but the end result is still going to be the, and I've had, I've even had to tell myself, I've noticed this, had to learn that like, Sometimes that, that result of it didn't get done the right way or the right way or the way that I think, you know, it's going to need to be done because otherwise there's going to be a meltdown or something's going to happen.

[00:17:23] That, that reaction is usually only to me, but if we have a babysitter or someone and they do it a different way, they don't necessarily always react. In that same meltdown fashion. And I'm always like what? Sometimes I'm almost like annoyed. I'm like, well, why wouldn't you?

[00:17:47] Oh, I know. I know you get mad about that. Like, no, I just did this and they let you, the kids let you do that. Yeah. Yeah, no, it's fine. But that's the thing it's, everyone's got their own way of. Well, uh, their own perception of what needs to be done. I mean, there's only very few things on the planet. That's scientifically proven that are actually as it is.

[00:18:10] So we all agree that we all x-rayed back. So it's one little things, but in terms of our actions is there's old things I'm sure in the U S that are there. Quite a few that there's multiple ways to get a job done. But as caregivers, especially as a primary caregiver, my parents being prime example of myself, we have very stuck to this routine.

[00:18:34] I know I am for myself because I've seen my parents do it. Okay. It works with them. This is how it needs to be maintained. So if a carer comes in and we, we have external carers coming in just to alleviate some of the pressure that's put on us and they do it somewhere completely different, or they prepare their food differently or they.

[00:18:57] They prepare that cupboard in a different way. And we're like, no shirts.  X, Y and Z, because I'll conception is when we opened the cupboard door. We need to know where it is. If it's in the middle of the night, if it's a thousand, by the time of day, I should be able to be close my eyes, go straight to it, pick it up.

[00:19:18] And that's what it is. Time is of the essence to. Absolutely. And the thing is says there's nothing right or wrong about it. And sometimes I find that as caregivers, and this is something that I've noticed by having different conversations with people around the world that I've connected through, through the video and various support groups that we just need, like a sense of routine.

[00:19:41] We just get so happy with that routine. And we don't want it to break. Yeah. Right. Whereas there's nothing right or wrong about it. Sometimes. I wonder if I became a type, a personality or if I already was one, because everyone, we talked to seems to be type a personality and like, wonder if we were just created, if we just happened to all be type a or.

[00:20:04] W did we become type a person to be fun out of necessity? Why do I pay you? It could be another letter, right? It could be a, you could be a number if you wanted to, but again, it's. Throughout life. And it's a societal thing as well. We stop fixating labels on onto things and people rather than just being very present and living in the moment and just dealing with the moment and we stopped adding emotions onto it.

[00:20:33] As they're crying, panicking, frustration, it could be something that's come out of some, an experience from when we'd be in that shot. I know from when I've been in John and I saw my brother being very hyperactive. Ripping up a magazine, so to speak because he was just trying to irritate everyone, but I may have perceived that to be something completely different than maybe attention seeking.

[00:21:00] And then obviously, uh, most daughters, uh, the apples of the dad's diet. So I would think, okay, why is that always going to my, my sister, hang on. I'm the baby of the house, right? It's just, I'm on the baby on the health of, why am I not getting sick too? And they're older than me, but again, these are the emotions that we're adding on to it, which sometimes gets to us more than it actually needs to.

[00:21:23] Right, right. Yeah. I think that makes really, that's a really good point now. As, you know, like you just said, I mean, most of your childhood was your childhood. It was your perception of reality, right? It's just, it's your reality. You didn't know any different, which I think is a great as a parent. Children.

[00:21:45] And in one child who is in a, sometimes have a caregiver role, which we try our best to kind of balance that. So she's not so much of a caregiver sometimes. Cause right now she's 12 and we're, you know, she doesn't need to be, but there are times that she steps into that. I mean, right. Even right now. And we do know, I mean, I've said this a lot, like.

[00:22:06] She's older. She's at babysitting age. Other siblings are babysitting too. That's just her age Grange, but you know, she does a little extra because he needs a little extra. So we try to kind of be aware of that. But. I think and get concerned sometimes. Oh, are we giving her too much responsibility? How is she feeling about that?

[00:22:28] Are we affecting her down the line? I'm overthinking it as a parent. How much, you know, do you feel now looking back funny, do you feel now looking back as an adult, did you feel that you had too much responsibility as a kid? Do you know, how does it affect you now? Insurance question? Uh, My flat answer to that is no, at the time, I think it was more confusion trying to understand that, okay, this is a big wall.

[00:22:57] These are the things that I'm learning in school. Where does that fit into home? Or these are the things I'm doing at home. Where does that fit into school? So indirectly I created two separate worlds. So homeless home in chat home at school because no one outside of the home would understand. And you don't share school at home because once you come home, you don't have time to sit down and do everything rather than sit down and have your day notice.

[00:23:23] Do your studies then wash up, go to bed. And then the next day starts all over again. So from, from a cultural point of view in the UK, it's, it's not something that's openly talk spoken about. Then I know in the Asian community generally. Uh, I'm talking from my own perspective on not generalizing that again, it's one of those things that people don't like to openly talk about to say that.

[00:23:49] So we have a brother and sister with special needs or a disability. I mean, when was the last time any of us went to say a wedding or a big, big function? Non-family we ran. Orientated when there was someone with this book could be someone in a wheelchair or someone who has say cerebral palsy or any different avenues of disabilities or special needs.

[00:24:14] They just don't seem to be there. Very few. I'm not saying it doesn't happen. And this is the thing that. Because I've made them two separate walls over such a long period of time. It became normal normality, but it got to a point where you're then stretching yourself over with so many different areas of life, because you want to enjoy being a kid and growing up and everything.

[00:24:38] The same things that everyone else does, but at the same time, you want to maintain your responsibilities at home because you don't want, for me, I didn't want my parents to go through a lot. Right. I mean, they had the, the friends that support networks, but again, I'm, I took it on as I'm a member of this also I'm the son in this house.

[00:24:59] I've got to equally step up to the plate because at some point. We had to have those concessions, it's going to come back to myself and my other brother, we need to be able to, okay. Say take over the mental piece, so to speak and understand the dynamics and the comp severe complexity of everything that it takes.

[00:25:21] Be it from a state level, with the financial impacts, the decision-making the every day to the talking to clinicians. To really get to grips and understand it from the basics. So the sooner we got involved in it, the sooner we would have a better idea. And as we all know, things from clinician's point of view constantly keeps changing.

[00:25:41] Yeah. Constantly feeling the so. You have to put on the AMO, the helmet, the gods and everything, and go for a full out fight, even though you don't want to, because it's, again like we've spoken about previously, when you go to a hospital, you see any clinician or anyone, really, their first response is how do I deal with this?

[00:26:04] Not the fact that this is another human being. It's irrelevant, how you deal with it. You deal with it the same way you deal with anyone else. But because they. They're not trained or they don't have the experience to deal with it on the cuff of the hat. Like they would with everything else. It then takes another five, 10 minutes for them to calm down and them to get the grips, rather than just treating them like a human being, but just adapting it in a different way they would do for any other human.

[00:26:34] Right. Well, I think that in general, I mean, we've seen it here. I think that there's been a, there's been a shift in. In that world right now, where they're trying to get back to a book for a while. There it's been, you've got 15 minutes to cease a patient you're in you're out. So that humanity, part of it has been almost trained out of clinicians.

[00:26:55] And so they've got 15 minutes. There's no time for that. That humanity part we're in, we're out. We're going to talk about it. So a lot of times I had noticed in the beginning, like no one was even looking at him, talking to him, It was black and white we're in and out with, tell me about the diagnosis. Tell me about this.

[00:27:10] Okay, bye. And I was like, Hey, can we talk about how things have changed? What I've been seeing, talk to him, look at him. Notice the things that I've, I'm noticing, like have him walk a little bit. So we switched hospitals. Well, cause then it's more to do, honestly, when you talk about that and you you're adding more variables, like these doctors are leg.

[00:27:32] Okay. Oh, okay. Fine. Well, No, I got to introduce you to this specialist now. Yeah. So I'm like, I understand, I mean, on both sides, they're trying to do a job where they're trying to do the best that they can. There's so many, like healthcare costs are very high, so I know. Yeah. But the thing is, is it more about healthcare or was it more about numbers?

[00:27:56] And that's a thing in recent times, it's become, you've got a set quota that you need to get done in say a shift or a hospital or a walk. Yep. Get it up. Because if you don't, then all funding drops on so many other variables that contribute to it. Okay. Just give us that. Yes. Five minutes. And rather than speaking to them directly with the notion of no, they are the patient, but you can only speak to them.

[00:28:25] Hello, we are the caregiver live with them on a regular basis. If not every day, we can probably give you a few extra insights into what you are trying to figure out five times quicker than you can get to it. Right. And it could be the smallest thing by their facial expression or. Something that they may do that triggers you to, okay.

[00:28:47] That's what that does. And then you tell the doctor off of them saying, are you okay? Is anything hurting? Is this? And if the person is non-verbal. Yeah. Do you go from there? Exactly makes it that much more tricky for them. So I do get where they're coming from, but I strongly believe that more communication needs to happen between clinicians as well as the caregivers.

[00:29:10] And it's not just clinicians, I'm not just going to blame them. It's it's restaurant does. It's it's the entire spectrum outside of people who've got special needs and disabilities and caregivers. The more it gets like this, the more conversation that happens. The more it's recognized and the more people are just aware.

[00:29:30] And when you're out at a restaurant, we're out anywhere, the more, instead of speaking, you're speaking to the whole, you're just fully having a conversation as if you're having a conversation on the table. I think that's the biggest thing that we I've noticed. Like even when we're out, you know, cause Eddie uses his wheelchair for long distance.

[00:29:48] So it's very rare that we have it with us. But when we do, sometimes I've noticed a big shift in how he's treated. And I'm just like, cause nothing has changed except for how he's getting around. And then all of a sudden someone's vocal range is in a different spot or their tone has changed and Oh, how cute he is all of a sudden and he is cute.

[00:30:09] Don't get me wrong. That doesn't change. But it's just how we're speaking to him. Or, or, or a little kid will say something to their mom. And instead of just saying, Oh, what's your wheelchair for? And Eddie will just tell them it's we're whispers and whispers, which. Yeah, a hundred percent. Don't stare no stairs.

[00:30:28] I hate those. So you can feel the eyes at, or somewhere there in the background you'll and say something, but I don't want to be. Yeah. And I don't want to, like, it's all just them being them, just not knowing enough. Like it's not out, it's not out of anything that they're trying to be. Mean or anything like that.

[00:30:49] They're really just trying naturally curious, not even just children, even adults. Like, I don't think anyone's being mean spirited. I think they're just, they just don't know the right way. And if somebody is uncomfortable, which I totally understand, I've even in my myself found myself in a situation where you just, you don't, if you don't know what you don't know, you're uncomfortable and you might say, or do, I was like liking it too.

[00:31:13] And we all know anyone who knows me, knows I do this. I have not once handled a funeral or a week in the right way. I always say the wrong thing. Always do the wrong thing. I handled the whole situation incorrect, but I'm stuck with her, like at these events. So everybody's like, Oh, look at these two. And I'm like, it's not me.

[00:31:30] I'm the good hugger. Like, I'm the good one. How I think about it? Like, it's not because I don't have, I don't mean, well, I just do not handle the situation. Well, I get nervous. I get, and I. Just fumble over the situation. I think that's probably what's happening. So I either have an opportunity to educate and I can, even if I'm, maybe I'm in a mental crappy Headspace, maybe I'm, you know, I know that it's not my responsibility to teach the world because sometimes I'm just having a shitty day and I don't want to do that, but some days I'm like, okay, this is the day I'm going to just say no problem.

[00:32:09] If you want to come over and ask him what. Why is wheels light up or, and just nicely. Yeah. Or just nicely do it because inside, I just want to be like, just ask him, but I have to like take a breath and be an educator at that moment because otherwise the world isn't going to know the right way to handle.

[00:32:34] Yeah, absolutely. I mean, it's similar to what you just mentioned as does a large amount of ignorance that is out there. And I guess in today's culture, in communities, especially growing up this, what do you say? And if you say it the wrong way, am I then going to get sued or am I then going to have some sort of fine thrown on me?

[00:32:55] I mean, it's. It's not a bad thing to have these open conversations, but you can also see it. The other side that people are reluctant to have these conversations because out of Farrah, what is the ramifications going to be? It's only going to come back. Some people really don't give. I do hoots about it.

[00:33:13] Uh, I, I did have to cover up some of the ones that I was going to say. Okay. I swear on this podcast is the best thing about this. It won't stop. We'll save that for a blooper section again, it's similar to, when you see someone who's got say is in a wheelchair. But has a disability or even more commonly a mother with, with a pram, trying to get into the car, do you help?

[00:33:44] Do you not, some people instinctly will jump up, but somebody were like, okay, I'll help. But what is someone else going to say? Or they may take, they help to be. That I'm, I've got sympathy on I'm being sympathetic rather than being empathetic. So I think it's a very fine line between the judgmental of what is being sympathetic and what is being empathetic is from a caregiver's point of view.

[00:34:10] I would rather the empathy rather than sympathy sympathy. I can go back home and cry my eyes out. If I was going to go to a support group will understand it. But from the general overall community, we're not in that place. And with the, it's such a powerful thing. And even if it's one or two words, you're okay.

[00:34:31] Or do you want me to hold the brand and the wheelchair or the adult? Small little things like that have made an enormous. Impact on that person stay. And even the next couple of days, because again, similar to, to the video that I created, we all have good days. We all have bad days. We all have the in between days could have been better or the other days where we're lapping ice cream, because it's been a fantastic time.

[00:34:56] We've got everything else is the way. So, so, but it isn't everything in life like that. Yeah, I think, I think exactly what you just said, like the sympathy versus empathy, I think the way, you know, which one is how or what to do, just go with your gut. And we've all had that moment where you see something and you're not exactly sure what your gut happens.

[00:35:18] And you're like, ah, do that the second, that, that got moment. You feel something, just do it and go with it. What is the worst? I mean worst case scenario, they're going to tell you to screw off and you're done and you're bad and that's it. And you feel kind of crappy, but you at least made that attempt to be, to do the right thing and it doesn't work out.

[00:35:43] Okay. But you can walk away knowing, okay, I might've done that wrong, but at least I tried. The other flip side they're on their own, correct. I mean, that person may tell you those girls because they are having one of those bad days or maybe in just that moment that they've just got selfless with everything that they're having to deal with.

[00:36:03] It just got on top of them, came to him two minutes earlier, or while you were deciding what your gut should do, if you. Acted on your instinct. Okay. I've seen that go to help. That split-second could be all it took to for them to completely come down to neutrality and say, you know what, thank you. Or even just a simple, thank you very much.

[00:36:24] Or you know what? I've got it. It's okay. But thank you for, for offering all live God. Doing now have such a big impact on, on myself. If that was for me, as well as the person you're trying to help. Yeah,

[00:36:44] I just kinda edit when I called her. Listen, this editing is taking forever. I have to go grocery shopping. Yeah, that's why you should go to Instacart or right now they connect you with a personal shopper in your local area to deliver groceries from your favorite stores. Instacart delivers groceries in as fast as one hour.

[00:37:09] Hey listeners. By following the link in our show notes, you help support our show. By doing this Instacart is offering our listeners free delivery on your first order. Over $35.

[00:37:25] So now I think this is a perfect transition. I mean, Speaking on empathy, your docu-drama. This is me really, I think speaks on that for sure. How did this come about? What, what inspired it? I mean, my assumption is, you know, your life inspired it, but tell us a little bit about how it came about. Oh, okay.

[00:37:47] Where do we start with this? Uh, so I'll give you a bit of a background content. So about three and a half years ago, I, I had open heart surgery. Very very randomly fell. Ill, gonna leave usual winter bug that usually goes wrong. Uh, but that progressively got worse and worse got admitted to hospital. And then after a couple of days in the hospital, after a day in hospital, they said, look, you've got a heart issue.

[00:38:16] Okay. So a couple of tests forward, falling forward, sort of fast forwarding a couple of months. I think I told him. By the way you need open heart surgery. And I had no idea about this until I was going into a CT scan machine. He did an MRI, sorry. Half way in doctor comes in and says, by the way, this is your scan for your heart surgery.

[00:38:38] So you're like on the little conveyor belt, they're like, you'll need surgery. When you come back. I got a similar experience by the way, not move on while you're on this, uh, this crazy thing that goes on. Yeah. As the noise scares the shit out of you and go, and I was like, Oh, you didn't know. Yeah. My face.

[00:38:58] And my reaction shows that I'm completely understand about Cedric. It was like, right. So we need time for this conversation, but anyway, we'll save that for another day. So fast forwarding that I had the surgery, he came out and full the first four months. I couldn't see anyone. I was in complete isolation.

[00:39:17] I couldn't see my, my siblings. Uh, it was only my wife, mum because of her medical background and immediate, immediate family. So everything else was completely topsy-turvy, uh, spend more time watching YouTube, uh, than I did anything else sleeping by during the day, YouTube, but not yet. Mm, FYI there sort of very random videos on YouTube insanely random, but, but at least I got to catch up on some old classics from, and Jerry Garfield Simpsons, uh, to name some.

[00:39:52] And then, so it's within that. I started thinking, you know what, there's gotta be something here for, for siblings. And that's such as myself because there's a lot of support groups, which you've touched on earlier for, for the parents of the clinicians have for key workers, E overall professional self that take care of the everyday things.

[00:40:15] But what is that for the siblings, someone like myself who has brothers and sisters, like, and I know in the area Ironman, they're a lot, they're a few of them. So if that's just my area, what is there in the country as well as globally? So I started doing a lot of research into it, some good, some bad and lots of indifferent stories when came and finally came across a charity in the UK called sips UK, which was fantastic.

[00:40:45] So after I could stop moving around post rehabilitation, contacted them, went to one of the national meetings that they had. I'm just said, look, Hey, I'm so-and-so, I've got two siblings with special needs and the weight that came off my shoulder, because I'm now able to share this with someone or a community.

[00:41:06] That understand where I'm coming from. And it was so Sims as a charity works for neither siblings. So my wife wouldn't have been able to come to it. My parents wouldn't have been able to because there's certain emotions and feelings that only a sip could resonate with. So that was one good thing. So while I was there, uh, I was very conscious that I was the only, or one of the only, uh, ethnic minorities that.

[00:41:35] And this is a room of probably 50, 60 people. Well, hang on. This can't be right, because I know there are more out there. I'm not the only one. If I was there, I'd be singing and singing about it to an extent. But, uh, so I had a conversation with them and they said, look, am I the only one though? Like, you're the only one who willing to take that step forward and have that conversation come to our events.

[00:42:03] So that struck me. I was like, really that's surprising. So I got home. And then a couple of days later, the, uh, one of the organizers send me an email and said, look, do you mind writing a case study on your experiences of having siblings with special needs? So I, I wrote that it, it took me a year. Like most things are, where do you stop?

[00:42:25] How do you start documenting your first feeling? The first notions of what it was like the weather there, this, at that one home, I came home from Lux, which on laptop it's getting done tonight. I don't care how it's going to get done. It's going to get done. So did that submitted to them? They were more than happy.

[00:42:46] I did give them the option of changing things if they needed to. They said, no, we love it the way it is. So that was the birth of the case study. Fast forward a couple of weeks while I was sitting, uh, uh, for dinner with a couple of friends in London and. His wife done wrong and said, uh, why didn't you turn this into like a YouTube video or a VMO video?

[00:43:12] I have to say it was hard enough putting it into what's. Yeah. Where would I start finding someone who can, who can video it? Because it's not something that I can cause I have no, no idea. And the concept of filmmaking. So incidentally, her husband who has a small film company said, do you want, I'll do it?

[00:43:32] You know what? That's how it happened. So that was awesome. That's how it happened. They, they say a lot of things happen. A lot of good deals happen in restaurants or golf, golf, golf courses. I completely can come with this because the food was amazing. The company was great. It could have been better. My wife was at, but I think she was traveling.

[00:43:52] I had to get that dig in. She left. She wasn't there. Wow. She was traveling. I think she was in New York visiting my parents at the time. So that's pretty much how it came in. Incidentally, the following day, the charity came forward and said, look, would you mind turning this into a video? So we can show it to all funders and the people you're like, by the way, hang on.

[00:44:17] The charity is asking me. Yeah. The charity is asking me, some friends have asked me to do it because they feel the visual impact will be there. Not just in Britain. Okay. There's, there's something here. There's something happening that I'm resistant to. So let me just give up the case study. And let's just see where it goes.

[00:44:39] So I handed over the case study to, to him that night at the restaurant, he took it away, sat down with another member of, uh, the, the company that he has and they wrote the entire script. Uh, they gave it to me and the script, right? His name is Jax said, look, if you want to change anything, change it. But please tell me we had conversations about it, but not more than happy.

[00:45:06] He was like, but there's gotta be some as though. He was looking for something to be changed. And I was like, no, you've nailed every single thing from the script to the visualize it, the narration of it was completely his and the visualization was thanks to, uh, the owner of this company and their end up.

[00:45:24] Uh, so the two combined created the Sydney and it was in the living room where we came up with the title. We bonded for a couple of hours of what do we call it with? This happened, in fact, with that. I just turned around. So I get you want, it is as it is. This is me, people like it. They like it. They don't, they don't in that moment.

[00:45:45] This is me was formed and that's where we are today. It's great. I mean, it had an impact for sure on us. We, I mean, we. Clicked it on. And we were like, okay, let's check it out. Let's see what this is. And I think it was, I mean, it's more than just, Oh, this is a story of a sibling care taker. It's a story of that.

[00:46:09] Plus, you know what, as in general, what it's like to be a caretaker and you guys pretty quickly on hit home of visually how it feels to kind of feel alone even when you're not alone in it. Yeah. Absolutely. It's just, it is, you know, it's funny, like, you know, I, you know, our life is so different, but similar in a different way, like, you know, just be like you, when you mentioned it before, like on a regular basis, I can be running around doing a thousand things in my brain.

[00:46:42] There's a thousand more. Going on. I'm thinking about, okay, tomorrow what's on the agenda I have, and make sure I have this. I've got this. It's exhausting. It's tiring. And so I'll have friends or family members that'll say, okay, well, you know, look, when we took this vacation, I was like, we need a vacation.

[00:46:59] Everyone's like, well, everybody needs a vacation. We're in COVID. I'm like, no, I don't think anyone understands how badly. Like I'm going to have a nervous breakdown if we don't just get a few days to completely reset without the kids. Because it's not the kids that we need the reset from it's the non-stop 24 seven.

[00:47:20] Yeah. Well, to be honest, the kids are like 20%. I mean, they're presented, I think it's caretaking as a whole, and then you add the extra onto it. And then just life. It was just it, we were, if we were at a point where I think we were just really burned out and we were recognizing it and I think, you know, I get it.

[00:47:40] We, there's probably a lot of people that are burned out and need a vacation and COVID is burning people out, but I'm not going to apologize for being able to say, Hey, I'm burned out and I need this. And I'm going to do this for myself. I'm just, we're not going to apologize for needing those few days.

[00:47:56] You can't. Absolutely. We shouldn't do kudos to people that, that are able to stand up and say, look, I'm burning out, or I need to take a step off the accelerator. Someone please just step in. Even if they're there. I have a couple of. To you with yourself or to just go for a walk with itself five, 10, 15 minutes, whatever it is to it.

[00:48:19] And then all you have to switch off is, is it extremely beneficial? Well, and I think we learned from this that we probably wouldn't have gotten to that level of burnout if we had done exactly what you just said. Taking a little time out here in there would not have gotten to with us to that level.

[00:48:37] Right. Do you remember when the last one I nearly came? That's the thing, this is the thing we keep saying. We're going to learn that I'm equally corporate to it, but the thing is we get so consumed within everything that needs to get done and like. You just eluded to earlier that you've got a thousand things to do.

[00:48:57] If you're doing this, you've got there, but it takes that one phone call that one text message or SMS to say so-and-so is a little unwell. Suddenly everything breaks down. They're like, okay, I've got a mountain there. I now have to throw all the things that, okay, why are they on? Well, we'll have an I given this medicine or haven't they done this?

[00:49:18] Or have they fallen somewhere or do I have taken to a clinic? Is there someone that can help me? We then add these things on there rather than just saying, well, it's cold outside. It probably just got a simple cold. Yep. Yeah. Well, we add. Everything on. And that speeds up our process of getting to that burn out.

[00:49:37] But I've seen it way too many times from myself. And I keep telling you that's how I not going, but yeah, but I think it just comes with, with being a gatekeeper it's yeah. It happens. I guess parents would also go through that point, just taking care of their kids. At some point, you get to that point where you would like, Oh, Christmas there, you're just setting a closed room, time, scream, shelter, or whatever, neutralize yourself and come there.

[00:50:05] Hey, how are you on your kid and carry on. But where do we have that as keggers, which is why we have to be very regimented and factor it in it's extremely important. That's what I think I've learned that. I'm not going to be annoyed when I see friends. That are like, I go to the gym three times a week and I'm like, what?

[00:50:27] But you know what good for you? You take three times a week to just do something like I'm going to do something like that. I don't know when or what I always say, I'm too tired, but you know what? I'm not, I'm too tired because I'm not doing that. Look at you grow as a person I'm growing, I'm growing this vacation was so good for me.

[00:50:47] Patients are gross, but the thing is you're also, you're tired, not from a physical point of view, but more of a mental point, which we spoke about earlier. You're not able to switch off exist, always something that you're constantly thinking about. Yes, that's exactly. Your brain is always going. It's like a hamster wheel.

[00:51:08] Yeah, but the thing is within all of that, look at some of the things that say a young caregiver is developing or someone who develops into this from a young age, they learned resilience. They learn. It's true. Meaning of humanity, being able to take care of someone else, which is true on the of love rather than romance and everything I'll, which is great.

[00:51:34] She's not listening. So that's fine.

[00:51:39] Yes. And I had this in a workshop, which I did last year with some kids kept asking my parents why me? I'm like, well, why not? Yeah, you're learning some seriously hard skills now. So when it comes to going to your first interview or going into the professional world resilience, you've already got it.

[00:52:00] You've got it in bucket loads to domination. It's already there. Otherwise you're not going to be here. Um, hardworking already there. You probably got it before you were even born. So it's this one little soft skills that you can really say because when in there. An interview or an employer comes back, says, okay, why do you think, you know, hardworking?

[00:52:22] Why do you think you have the skills? Let me show you a bit of on my and watch that. And this is the thing when my manager first, it, I know why he chose to watch it at work. I won't do Monday had no idea. And he was like, why didn't you tell me, what am I going to tell you that I've got this. My word. I don't want it to affect my professional life.

[00:52:45] Right. Again, it's luck is what homeless it's like, no, but if you need help, I've got this. I know what I need to do when I need to do it. And I've got a spot structure outside of it that allows me to do that, but it also works for the other members of that spot truck. So again, it's, it's having these conversations similar to what you're creating and creating that presence that let's have that conversation let's have those open, free communications with different people within society.

[00:53:18] They'll start breaking down these. Yeah, he's artificial taboo is that for some reason, there are no community and culture. It is globally. It's not just in London, it's not just in the U S is a global issue. Like you just said, I I'm, we saw, I S I saw this firsthand. Um, and what you just said about, you know, like going to work really hit home because before we started this podcast, You know, I had like that we had all these friends when we first started having kids in this group of close friends.

[00:53:55] And then as things progressed with our son and everything, it's not that we lost friends. It's just, we kind of all went our separate ways. And in my brain, I was just like, well, they just don't understand our world. And that's okay because their world is so different now. And we just did our thing and they didn't think, and then it would get to the point where Eddie would say things like we don't really have any friends.

[00:54:12] They don't, they don't really understand my world or their world's so different. And then we started this podcast and. You know, we do talk a lot about our life, even though we're talking about resources and things. And then I, I've gotten a few phone calls recently from friends that I haven't talked to in a long time.

[00:54:31] And they'd be, they'll say things like, I just didn't know exactly what your life was like. And now we do. And why wouldn't you just, and I'm like, I just, in my world, I'm like this. Your world is so different. I wouldn't want you to feel like you'd have to jump into this or feel like it's a burden, or I don't know.

[00:54:49] I guess I felt like a guilt almost. And so it's similar. Same with work. Like, I wouldn't want to have this like stigma over me at work where they felt that they had to give me some leeway or like I work hard and I want that to present itself. But the other side of things is when things get hard. No, one's giving you a break because they don't know.

[00:55:11] There's something, you actually do need a little bit of a break. So they have to know your life that comes from again, being able to open up and talk and say, look, I need that extra in my coffin hour in the morning, or I'm going to be a little late, no. To affect my work because I've got this, I've got to take care of it.

[00:55:30] And then I'll be in and then I'll be as effective. You want me to work later? That's fine. But then again, if it also comes back to the stock, a go that fine line between sympathy and empathy, especially when it comes to friends, I completely resonate what you just said, because once the video went live, I had some friends that I haven't spoken to since my college days, uh, that came back and said, we knew about your sister.

[00:55:55] We didn't know about your brother or vice versa. Why didn't you tell us? I was like, We're in college where we get to sit down and have a conversation about this in our first year of college, everyone's too busy. Enjoying college things that everyone knows happens in college. I don't remember that time at the party where everybody was like, Hey, Defold your deepest, darkest secrets.

[00:56:22] Yeah, exactly. And the thing is we all like when you could have told us, okay, but I want to stage within say the three, four years of being in college, were you in that mindset? Where you are willing to listen authentically without anything else going on about someone else as well. Right. And even if you work, how much would you actually process because your mind is probably thinking about your thesis or the next exam, or when am I going back home or what am I going to have for dinner or man, my socks and meats match.

[00:56:56] How did I not put the right socks on small little things like that? And it was like, Yeah, but you should've stopped me. I was like, no, no, no one is here. We're in that space to have that conversation. And, yeah, it's not as though we don't try to have the conversation with people who aren't in that realm, because it just means that we're expanding our support network, but sometimes it's easier to have them done because other people have other things going on.

[00:57:25] And it's not as though they don't want to be out of our well and vice versa. It's just that the things that they have going on, uh, not a more of a priority than the concessions we potentially, again and again, it could be just in that moment, you just become a different time. There'll be all this. Well, I think this platform is that important even more because that you take out that, that level of.

[00:57:52] Formality in now, someone just picks up a podcast. Someone picks up YouTube, someone they're already scrolling through that level of how do you bring up this conversation without it being. You know, for lack of a better word, a mood killer, or I'm not saying, Hey, we're just talking about this big, heavy elephant in the room.

[00:58:11] That's a difficult conversation that might make you look at me a different way or whatever. Instead, you're just having, Oh, this car, this thing is up on Facebook, on YouTube, this podcast, I can just listen to it in the car or wherever. And now. I am involved now I'm interested now my mindset is different because I'm just thinking and I'm listening and Oh, my view is different.

[00:58:37] That's I think why this media type is such much more impactful. Yeah. Yeah. Because I guess the benefit of social media, everyone's on look up in technology. It's right. And that was the other thing. When I was talking to, uh, their, into Jack's about it. The, during the geo nerve cake action films say, okay, how long are we going to have this?

[00:59:03] And my viewpoint had always been as a carer. I don't have half an hour. If I had got a house for now, I I've missed doing something. Right. And that was my viewpoint. So, sorry, give it 10 minutes if we can ever lose shorter. Great. Because that's enough time to sit down, have some, a cup of tea or have biscuit and have your breakfast.

[00:59:25] Your bagels are done. That's a coffee or whatever it may be, but it also is a few minutes where you can switch off. Was something there you want to do and then be straight back president into what you need to get done for the rest of the day. That's why we were very cautious. Yeah. That's why we were very cautious about the timing in terms of the impact and the script writing.

[00:59:48] Kill date. I'm still blown away by the work that, uh, our director Jackson done, because this is someone who's is not gone, uh, firsthand experience of, uh, people with special needs. And then there's the bookcase. So I've literally given him the case study. Yeah, go for it. So for someone to be able to create that impact, that visualization.

[01:00:14] Without that background speaks volumes for the work that he actually does. And again, not to full cake, I can film. So putting it all together in such a short period of time. Yeah. And getting across, you know, multiple messages in that one, you know, timeframe, I think it speaks volumes, you know, getting across a message of, Hey, let's put out.

[01:00:39] You know, representation. Hey, let's put out a S you know, communication of. No loneliness. And what does it feel like to have on some level? You know, I think there's a similar and about like on some of the mental illness of, Hey, I'm alone. This is how I feel. I'm I need to reach out to somebody and then there's this third level, which.

[01:01:04] You know, it's so important, like you said, there's someone else there to reach out to you to say, Hey, do you need some help? Is there something I can do for you? Hey, here's, here's, here's a resource. Let me give that to you. There's just so many levels involved that they captured in such a short amount of time, which I think is a really, really important.

[01:01:21] Yeah, absolutely. And then again, biggest advocates. I was supporting the three of us when they were putting it together, was our whites. So we have to give them the due diligence necessary. That was good. Good husband it's uh, because obviously, uh, filming, we wanted it to be in quiet areas, especially for the narration, uh, and all this about that.

[01:01:45] They have given us it's. It's just been amazing to be fair. When we put it out there, we only wanted maybe 500 views if we were lucky. Uh, but to be able to be, to have the video seen by over 25,000 people, 64 different countries globally, some countries I've never even heard of, uh, just speaks volumes for that.

[01:02:11] There is obviously something there that people are resonating with. Oh yeah. Yeah. I mean, I think like you said, it impacts everybody at this. There's nobody, it doesn't affect, you know, it it's the same everywhere and we're all, we're all going through the same thing, no matter where you are. Yeah, absolutely.

[01:02:30] So now tell us a little bit, now you've got, you're doing blog as well, kind of piggybacked off of this. Did this, did this come after? I'm assuming this came after the docu-drama so, um, What, what are you doing with the vlog? Tell us a little bit about that. So the flock came yeah, a little bit after the video went live, the video went later at the beginning of January this year.

[01:02:57] And. I didn't want it to be a one hit wonder. So I didn't want the whole, this is me to just be, here's a video to let's call it a day to be able to see that bad impact. I mean, 25,000 people in what? Six months. I think it was for me, it was on her though. So scratching my head saying really. I just kept seeing the numbers on a regular basis, except my wife was like, can you stop looking at.

[01:03:30] Would that you're not impressed. I was like, I do dig the numbers, but made it by it. And so some of the other guys, the rest of the team that, that form part of it, one of the characters actually is, uh, works in the clinician background. She's a doctor and even she's jumped on board and said, you know what, what you're doing is fantastic.

[01:03:57] So the V-Loc game kind of as, as a second baby job, we will contemplating with, okay, what do we do next? Do we create another video? Do we not? And I thought that's great. Let's connect with people from the different areas of caregiving it, uh, from a mental health point of view. Male ma caregivers, which is very rare.

[01:04:23] Caregiving is more inherently female orientated, uh, our ground, but we have one for equal opportunities for everyone. Okay. Let's get them on. And it's always good to, to understand and get a perspective of different viewpoints. So we created that and. Again, that's, that's blossomed into it's its own little thing.

[01:04:45] And recently we've been running a competition with a charity in India as well, again, around special needs and then disability. So it's really creating that platform for others to say you want, Hey, I exist. Yeah. I'm not just in the corner dealing with so many different things, jogging in so many different facets of life, but it's also giving them an outlet to say, what.

[01:05:12] I will. I want to share something. This is what I enjoy doing. Okay, great. If you're right to contact us. So that's great. So it indirectly empowers them as well. And that's what we stand for. Just empowering others just to live life as fully and as free as they can be, because anything is possible. And to use their experiences that they've already got.

[01:05:35] To achieve the goals that they really want to get. And if I can do it, anyone can do it. Well, I think that's great. I mean, I think that it's just another way to kind of continue to propel all of it forward and in continue to get the word out there. And you know, like you said, like relieve that stigma a little bit and get people talking and communicating and in growing a network of people that need a community.

[01:06:01] I think that's going to be huge. I mean, there, there's lots of siblings out there who probably feel alone, and this is a huge opportunity for them to know that they're not. Um, and if it gives them an opportunity to say, Hey, let me look and see what's out there in my community. And if there's a network of people that I can connect with, and this is a great.

[01:06:23] Chance for them to kind of see that and know that. So I'm glad that we could help kind of bridge that gap. Well, that is that we were fortunate enough to have won a couple of, uh, international film awards for it, uh, from various film festivals. So it got entered into, uh, go to see off kick action films in one of the biggest.

[01:06:45] Areas I really wanted to have an impact is, is Asia exerts a lot of support groups on social media, as well as websites in the U S right. In Australia and New Zealand, that sort of thing, but there's not so much of it in, in Asia. And it's also a topic which isn't openly spoken about as freely as it is in, in the West, uh, or another first world country is bullet so fully for us, especially myself.

[01:07:15] That was one error, which I really wanted to break into in St. Louis. This happens. I'm an Asian I've opened up. It's happens to all of us. It's there. It's clearly there, especially when you go traveling and surprisingly one of the first. But Walter we received was from India. Now let's really go to town with it.

[01:07:37] We've got our foot into the door. And since then we've really been pushing within Asia. We've got, uh, I haven't looked through the numbers recently, surprisingly, but we've got viewers in, in Malaysia, Singapore, and, uh, on this box, on the golf again. Even in, uh, the ABC islands, South America, winter, the ABC islands, I had never even heard of it.

[01:08:05] And then they said, Oh, you know,  then yeah, everyone knows. And then that little dot, which I always thought was a piece of dust on the map. Well, I feel like that's really exciting too, that like, you know, being award winning there. Only heightens the awareness and then is going in these countries where that is got a little bit of a Sigma, it's going to be like, Oh, Hey, this is something I can talk about.

[01:08:38] This is something we can open up about. And if more than not only are people going to kind of reach out branch out, it's going to be more of a thing there, but then hopefully it also creates more. Content more, you know, more of everything and more representation in Asia, you know, all around the world to just kind of really, really, really get the ball rolling.

[01:09:04] Great. I think it's not just about the geographical location as well. It's also from a societal point of view, but yeah. On the news, you hear quite a lot about black lives matter and the Bain community, but it's just a re-empower everyone. It doesn't matter what your background, your colleagues, your greed, your community may be the in day here, human, you still got feelings, right?

[01:09:28] Let's do these open conversations. And if you've been through something like this, great, I mean, just after the video went live, I got a phone call from, from a local, uh, well-known charity to say that. If it wasn't for your video, one of the participants or users, whatever you want, a golden was actually considering ending their life.

[01:09:51] But there was something within the video that they had seen that they thought, you know what? There's gotta be a better way. And, and ending things is not the answer, but thankfully they took that step. What it was in the video. I don't know you want, if it saved that one person. How many more has it saved that I don't know about right then for us, that's, that's all that, that we wanted.

[01:10:18] All that I wanted when I heard that. And also a conversation I had with a very dear friend of mine in Gibraltar, who I went to college with. Again, same sort of thing. They'll most men opening up about their emotions. Often seeing that video, some of them saying, dude, I'm close to breaking down into tears after seeing that.

[01:10:39] Why did you never tell them? And again, it goes back to the cycle of, okay. When did you want to hear about this? Right. The wrong time. I'm just used to getting started. Do you want. I just want to give you a big hug and is, are men and not emotional? Yeah, right there. Oh, we know in this house, let me tell you, we just more candid about how we show it, but again, I.

[01:11:07] It's completely blown away. The entire team has, uh, most of my parents have just being completely blown away by the love and support and feedback that we've had from it. Because again, let's let me be very Frank. None of this could have happened without my parents' support and my wishes. Well, they must be proud.

[01:11:26] I mean, your wife, they must be proud. I mean, they. They've created. I think probably, you know, and you got, I bet you, they don't even realize this. You don't even realize this, but probably a culture inside your home. That's a very. Nice. Yes, but also, yeah. And unique and just loving and it works, you know, it sounds like there was just a very good balance of yes, you had some responsibility, but not more than you needed to have, you know, sounds like you were a sibling as a sibling should be a child as a child, should be, you had some responsibility as a caretaker because that was your role in the household and that's okay.

[01:12:12] Um, sounds like your parents were great in balancing that. Absolutely. My parents were very, uh, very strong believers of, okay, this is your life. You've got to get an education, but you've also got to have that fine balance. And whenever you can add in hard work as well. To it even better. And that's the thing I learned from a young age and swell as my other brother did that.

[01:12:38] We've got to grind. We've got to start from young age and start building something because no one knows what tomorrow is going to bring. And they really gave us every possible tool that we could, uh, from a contract point of view, uh, from community point of view, as well as. Everything else that they've shown us and just being as Berenson.

[01:12:58] One of probably the biggest achievement I've been able to have. It may sound so, so simple is to be able to sit with my parents and just have that open Frank conversation. But Zelle, somethings in the videos my parents were like, where did that come from? We never knew about that. I was like, okay. But do you remember this time?

[01:13:19] Distance was like, yes. This is where that came from. And it's the aha moment. We now understand why you did things at certain times. It wasn't, and now you're being rebellious. It was because you were trying to find your voice. And you didn't know how to, because you were suppressed with all these other things that were going on.

[01:13:41] So it made, it seemed as though you're being rebellious, but actually you weren't were just trying to be, and now love it and abundance completely in the house. It's we still have our jokes. We still have our ups and downs, like any other family would do when you want. We've got each other's back as we always have.

[01:14:01] And that's the thing with, with all caregivers and with people, regardless of whether you have special needs or intellectual physical, there's always people outside of your immediate bubble. Who've got your back. You've just got to open up and up until we had our phone call and our text message, SMS, email, whatever it may be.

[01:14:23] That's nice. Perfect advice. Well, I'm going to ask you for a little more advice if you don't mind, but we ask all our guests, if they have 30 seconds to speak to their community, but there's no pressure on the 30 seconds thing. And I don't know why we ask it. What advice would you give to our community? 30 seconds.

[01:14:40] That's never long enough. I think the advice is just go with your gut. Don't feel as though you're alone. Uh, because you're not, uh, I spent a lot of time thinking, okay, I'm alone. There's no one else. That's going to be in a similar position with me. So I've got to get it on myself. I've got to figure it out myself.

[01:15:05] When you want, the minute you crack that will, and you stop opening yourself up and start exposing yourself. Sometimes you've just got the more skin you show the better at, Hey, I'm here. I'm vulnerable. I need help. The more, the wildest thoughts actually helping you and saying you want, why don't you try this result or when you tried that results, but openly embrace it.

[01:15:25] Not from a point of, I don't need it. I've got it all figured out, but just to look into it, because maybe there's something within what is presenting itself to you, that connection to help benefit you or. The people that are caregivers, not yourself or your immediate someone else. You may know the wider community.

[01:15:47] It may help them Oakland show as much skin as you can, and just be. Be comfortable with being vulnerable because that's where the real power is with every breakdown has a breakthrough to have. You've just got a really possessed with it. Comfortable in your skin. Yeah. So what are you working on now? I mean, with COVID, it must be kind of not helping promote everything.

[01:16:14] Can't really get out there and travel and do everything you really wanted to do. So what, what are you working on now with promoting it and the blog and all that stuff? Yeah, thanks for reminding me about the lack of traveling. No one can travel. It's not just you miss traveling. It's probably one of my best places to get respite.

[01:16:35] It's my way of switching off for a couple of days. Jump on a flight, go somewhere. Be able to completely switch off to I miss heavily traveling. Uh, What am I working on this? There's quite a few little projects are, are in its infancy and coming to development, but COVID indirectly has come at a right time.

[01:16:59] Not the pandemic because no one ever one. Right. Because the videos started taking on it's own little life. It's given me that time to really knock it down and say, okay, where do we want to take this next? So we've got a couple of projects which have been written at the moment. We've got a miniature book, which is being worked on at the moment.

[01:17:19] That's where let's say some animations, which are coming out, that all the information will be on our website in the next couple of weeks. Uh, yeah, so that's pretty much what we're working on and that should take us till, for the animation to the end of the year. And then the book, hopefully sometime early next year will come up and then we'll see wherever that goes.

[01:17:41] Hopefully by then we can start traveling thoughts, seeing everyone again, and hopefully create more possibilities with everyone. I was just going to say, you guys should create like a little, a little book or something for kids. Yeah. What's London, like in the spring. There you go,

[01:18:00] don't worry. We'll be, Oh, you can leave the kids out.

[01:18:06] No, that's okay. Whatever they want to call it. So where. Yeah, London is great. I mean, I don't know. Okay. One of those things. Yeah. United Kingdom, England, great Britain, London, Ireland in between Europe and the U S Greenland or Iceland. So where can everyone find you? Where can everyone find this as me? So all the information, uh, all our social handles, everything.

[01:18:38] It just had to official. This is www dot official. This is All our information of, of the video is also there or social handles of that. And please feel free to drop us an email or contact us in whichever way you feel. Great. Perfect. Always willing to hear from people. Awesome. We'll make sure that we link everything in the show notes for you, um, so that everyone can connect with you.

[01:19:07] Cause I think that, you know, as we've said multiple times during this, like connecting with you guys specifically, I think is really important. Um, everyone needs to go check out the documentary on YouTube. It's. Needed right on the website. They can see it right on the website, right? Yeah. Everything's embedded on the website.

[01:19:25] And we also just confirmed recently with a company in the U S that we're creating some content around disabilities and special needs. So there they're the, the middle go between, between an employee and the corporate world. So there's an organization who are creating that. So we are teaming up with them as well.

[01:19:50] Oh, that's awesome. Awesome. Well, we really appreciate you coming on and chatting with us Perkash. We're super pumped to have you where we were really looking forward to this one. Yeah. Again, that everybody needs to go check out. This is, uh, this is me because, um, it was absolutely absolutely moving. Um, it's very, very powerful.

[01:20:14] So you did a great job. Catch up soon.

[01:20:21] Bye bye. Bye.

[01:20:25] Okay. Well, thank you so much for listening. We really hope you enjoyed this episode as always. Please make sure you share with a friend and leave a review. You can find all the resources mentioned in this episode, on our Facebook or Instagram on, at special about special. Thanks again. And we'll see you soon.