A Dog Called Diversity
A Dog Called Diversity
Three Hearts......with Neil Wilson
Neil Wilson and his wife Stephanie have 3 beautiful sons. Archie 16, Lewis 13 and Jasper 9. When you think of raising three boys you probably think of a house filled with loud noises, strange smells, messiness and if you have boys yourself you will know the house is also filled with love and fun.
But the Wilson household is a little different. Of course there is love (and lots of it) and I’m pretty sure there is still fun and perhaps strange smells. In addition, all three boys have medical challenges, including two with an incurable life-threatening heart condition HCM (hypertrophic cardiomyopathy), and two are neurodiverse.
In February this year 16-year-old Archie came out to his parents as gay. If you ever needed to hear a tale of love and acceptance, this is it. As you will hear from Neil there is so much love in this family. I hope you enjoy listening and learning about his 3 hearts, his beautiful boys.
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Welcome to A Dog Called Diversity, a podcast where we explore the themes of diversity, equity and inclusion through sharing stories of personal and powerful lived experiences. Neil Wilson and his wife Stephanie have three beautiful sons Archie 16, lewis 13, and Jasper 9. When you think of raising three boys, you probably think of a house filled with loud noises, strange smells, messiness, and if you have boys yourself, you will know the house is also filled with love and fun. But the Wilson household is a little different. Of course, there is love and lots of it, and I'm pretty sure there is still fun and perhaps strange smells. In addition, all three boys have medical challenges, including two with an incurable life-threatening heart condition HCM, hyperotrophic cardiomyopathy and two who are neurodiverse. In February this year, 16-year-old Archie came out to his parents as gay. If you ever needed to hear a tale of love and acceptance, this is it. As you will hear from Neil, there is so much love in this family. Here's your podcast host Lisa Mulligan.
Speaker 2:Welcome to the podcast, neil Wilson. It's fantastic to have you here, thank you, and you're joining us from Victoria in Australia, aren't you?
Speaker 3:Yeah, yeah, we live in a small town. Ballarat is about 90 minutes drive west of Melbourne. Small town, probably 100,000 population, but you know it's not too far from Melbourne. If we want to drive up, it's pretty easy access.
Speaker 2:And you have three boys in your family and I'd love if you could tell us about your boys.
Speaker 3:Sure, sure. So I do have three boys, you're correct, and a wife. So the three boys, archie is the eldest, archie's 16, then Lewis is 13, and Jasper's nine all born in different hospitals, by the way, as we've moved around different places. Jasper, the youngest was actually born in Ballarat. But, yeah, got the three boys and they're all beautiful in their own way. But yeah, look, and I guess you know, but they all come with, they're all individuality, you could say so, and this is something that we've, you know, we've learnt as they've grown up. You know various, either medical conditions or disability, um, and Archie. We'll talk about Archie later on. Um, as well, but uh, um, yeah, I don't know where to start. Um, you know, they've all got different, they've all got different challenges, don't they?
Speaker 2:so maybe, um, do you want to start with Archie, because he's your eldest. Maybe tell us a bit about what he suffers from and how you discovered that.
Speaker 3:Sure, sure. So. Archie is our eldest and he's got Asperger's classic Asperger's, which is on the autism spectrum. He actually also has a condition called slow transit constipation, which I'll get to later. But he was actually diagnosed with Asperger's at the age of four. Soon after we moved to Ballarat and around the same time we discovered he had slow transit constipation.
Speaker 2:Okay, so how did you discover he had Asperger's? What was it about his behaviour that made you think there was something going on?
Speaker 3:Look, I mean, he's our first, so as new parents, I didn't really know what what I mean. I knew what disability was. I didn't know a lot about autism. I didn't know a lot about Asperger's.
Speaker 3:Um, you know, I know it's been portrayed in various tv series and movies, but uh, really didn't know too much at all, but um, we knew Archie was, uh, fairly special when he was young, um, growing up and he, he learned very quickly. At the age of two he was singing Taylor Swift songs from start to finish. He knew every flag.
Speaker 2:I love a Swifty fan.
Speaker 3:He's still a massive, massive Swifty fan and he knew every flag of the world. At the age of two he could recognise cars at a distance and he would say, oh, that's a Holden, dad, that's a Toyota, you know that's whatever it is. So we knew he had a great memory and he was really smart. And then, I guess, at the age two, three, he would also have these um, kind of meltdowns, really bad meltdowns, and and we knew that, um, his world was a little bit different.
Speaker 3:And when we got to ballarat we went through the whole process of getting him tested, you know, through the, the government, you know Victorian government, and it has to be through a registered pediatrician, psychologist and they prepare a report and of course he, you know, was 100% smack in the middle of Asperger's diagnosis and that's what they came forward with.
Speaker 3:So he's high functioning Asperger's and now it's on the autism spectrum. So they would say he's high functioning autism, meaning that he's very smart, he's very clever, he's got a great memory, but he struggles with those, uh, the social aspect still, um, and and his routine as well, like I can tell you stories when he was younger follow after the diagnosis um, actually, this was before the diagnosis. Before we moved to ballarat in, he must have been about four years old and we would sit down at the table we had. Lewis was two. We only had two boys at that stage, and if anybody touched their cutlery before anyone else like if mum was putting the meal on the table or I was putting the meal on the table, if Lewis dug in or if anybody touched anything, that was the end of it and we had to start again, meaning that we had to start cooking the meal again, which is not going to happen.
Speaker 3:Highly impractical, highly impractical. So at that, you know, at those moments which happened, you know, often enough I would take Archie off to his bedroom and we'd go sit in his bedroom on his bed and we'd eat our dinner in his bed, you know, and that was sort of a consolation. Other times he wouldn't't, he'd refuse to leave the house, you know. So we would have to try and coax him to get out of the house, um, so we had all these challenges. But when we moved to Ballarat he was diagnosed and then we thought, oh, wow, okay, now it all makes sense, you know. And then we spent a lot. We've put a lot of effort into Archie, um, through local disability organization, pinac, uh, and also the school that he was at at the four-year-old ELC. He's gone on to junior school, middle school. He's actually at the senior school of the same school now. So a lot of effort at an early age going into Archie.
Speaker 2:Does he go to a regular public school?
Speaker 3:He goes to a private school. All my three boys go to different schools for various reasons. Archie is at the local private school. Here in Ballarat there's two Well, there's Catholic schools and Christian schools but he goes to one of the private schools, co-ed, and we've kept him there. They are renowned for their academic excellence and that's not the reason we're sending him there, but that's what they're renowned for, right. So they have a lot of international students now but they're very academic focused. But that actually works for Arch, you know, with his routines. But the best thing for him is that he's got all of his friends there from the age of four and that's why we're sending him to the same school and we don't want to pull him out because, because of his friends, my middle one is in year eight at high school but he goes to a different school completely because he is not um. He doesn't want to deal with the pressures of, you know, four hours of homework every night.
Speaker 3:You know that's not him, so he's at a different school yeah, cool.
Speaker 2:So what was the second thing you talked about with Archie um?
Speaker 3:well, slow transit constipation so that's where, um, that's where the colon. Uh well, the colon does three things and I can't recall everything. It it's like it twists, it pushes, it contracts. It does three things. His colon does one of those things which means that the poo doesn't move like it should.
Speaker 3:And we knew that when he was young, that he wasn't having regular motions. Even at the age of four. We didn't have any idea what was wrong. He'd get regular constipation, pain, and you know, doctors would prescribe enema and the usual things. Right, and Archie was actually in a nappy.
Speaker 3:He'll hate me telling you this, but, um, he was in a nappy till the age of five, right, um, because he used to have a lot of accidents, because what happens is, um, the poo stays in the colon and the and the bowels, but it all just flows around the side. So he's got like these bricks in there, solid kind of, and then it just oozes out. So so this was at the age of four. He got diagnosed and the x-ray showed he was chalked up all the way up. So they um, did a flush out um at that stage at the hospital and he's so he's a patient of raw children's, for that matter. He still is um and uh since that age, even more recently when he was he's.
Speaker 3:So he's a patient of royal children's, for that matter. He still is um and uh. Since that age even more recently when he was he's 16 now probably 12, 13 was the last time where we've had to keep him home for two weeks because, um, literally um this is details, but literally he would, um, you know, have 8, 10, 12 dirty underpants in a day because he can't go to the toilet, but he also can't stop his bowels from just seeping because it all comes down the side, so we would just be washing knickers all day. He'd be home for two weeks while we wash him out. And so, as he's grown a bit older, that seems to have eased off a bit. He still wears a stimulation machine every night for one hour, which he's been doing since the age of four, and he takes um medication every night as well.
Speaker 3:So wow, that's a tough condition, wow it is for a teenage boy, I mean, luckily he's um. It seems to be managed as they grow older. They say they can grow out of it and they've tried to train his colon through the nightly stimulation for the last 12 years and maybe that's working, um, but he seems to be going okay at the moment the last three years which is great news, because you don't want a teenage boy as they start to socialise and, you know, meet with friends and go out to have these issues.
Speaker 3:So, yeah, hopefully he's all right there.
Speaker 2:Wow, okay, tell us about Lewis.
Speaker 3:Lewis is 13,. Beautiful like the rest of them, so Lewis is really sporty. Beautiful like the rest of them, so Lewis is really sporty, loves his sports, especially American. You know NBA, american football. He loves AFL. We're Mad Richmond supporters here in Victoria, so Lewis. When Jasper was actually born, in 2013, we discovered that Jasper and Lewis have a heart condition. They call it a chronic heart condition because it can't be cured or fixed. It's hypertrophic cardiomyopathy.
Speaker 2:And how did you pick it up in both of them?
Speaker 3:My wife had a fever when Jasper was being born the youngest one so the pediatrician was there treating her and looking after Jasper and then he discovered Jasper had a murmur in his heart and that's quite common and six months later, you know, the murmur cleared up. But he said, hey, I think we've got something else going on here, so went for the echo and ECG test and he was diagnosed with hypertrophic cardiomyopathy, hcm. And then the whole family got tested Lewis, archie, me and my wife and it turns out that the genetic story is quite fascinating. But Jasper and Lewis both have presentation at the fairly extreme end. It's a thickening of the internal wall of the heart, the septum septal thickness. I've got a mild case. I only knew I found out I had it at the same time, so I never knew. I found out I had it at the same time, so I never knew I had this condition at all. So we're diagnosed at that age and we're told to limit sport and sort of certain activities and about I guess it was probably 2017.
Speaker 3:On a six-monthly visit to the Royal Children's, one of the doctors advised look, I'd go out and purchase a defibrillator and it's time to start carrying a defibrillator everywhere you go because because Lewis is too small for an operation. But, um, we just don't want to take risks and we didn't quite know what he meant. What do you mean? Is he? Is he gonna die, you know? And he goes. Look, just just insurance, you know, just go, yeah. So we um weren't sure. I mean, they cost two and a half thousand. So we're very, very fortunate that, um, when a good friend of ours in Ballarat found out we didn't really want crowdfunding and all of that, but she insisted and she created a GoFundMe page and within six days we'd raised $5,500. So the generosity was just incredible. So we purchased two defibrillators one for home, one for the car and carried it around everywhere we went, you know, in a backpack on our back.
Speaker 3:Um, you know, walks, day trips, anywhere we went, and um, yes, and then on, I guess, on a particular sunday, the 10th of march 2019, we're a family outing just out at eltona by the beach. Um, and about, you know, 4 pm, we were at a park and about to head off, but, um, then, yet, I turned around and lewis was just lying on the ground and I thought he'd fallen off the swing or something. But he was caught prostate, um, and you know, I could see that he'd wet himself and then, uh, then his face was turning gray. So, um, kind of my wife, you know, screamed and then she jumped down, dropped down on me, she started compressions.
Speaker 3:I got the um defibrillator out and I put the pads on and, yeah, within kind of a minute, a minute and a half I guess, we saved him and he came back. So, so I guess he had he had a cardiac arrest and so, you know, very lucky that we had a defibrillator, because the ambulance took 10 minutes to come and it would have been a different outcome, for sure, yeah, had you learned CPR as well yeah, definitely, given their conditions.
Speaker 3:We both knew CPR and we carried the defibrillator everywhere. Even if I had left the defibrillator in the car and forgot to put it on my back, that would have added three, four minutes by the time I ran back to the car and came back, and that's a big difference in terms of cognitive impairment. So just the way it happened is just very fortunate To me. I still don't understand why a 10-year-old's heart gives up, like that's what happened basically, and there's no reason for that, except I mean, we know he's got the condition and so, yeah, many things before that we're grateful for.
Speaker 3:You know the fact that our good friend raised all that money the fact that the doctors gave us the right advice, the fact that he was diagnosed otherwise we wouldn't have known. So many things fell into place beforehand and um, that day, you know, we're able to save him.
Speaker 2:Yeah, amazing, and I bet you never want to have to do that again.
Speaker 3:We never do, but we are prepared. And they've both since had open heart surgery. Lewis, sort of soon after that. He was rushed to hospital and in the end they just went through the chest, which is what they try and avoid because he's got a big scar now down his chest. But they did that anyway and they've both got an implantable device.
Speaker 3:Jasper had open heart at the age of six, the following Christmas of that year. So they both now have that device inside of them which we know will kick in if need be. And we also have a 24-7 heart monitor at home which for each of them separately in their bedrooms and that sends data back to the raw children on a nightly basis. So if anything is irregular we'll find out about it. But the reality is we need to expect that there will be another one in one of them. But they've got the device in them and also we carry a defibrillator. So all of us you know all of our family, extended family knows CPR. Some of their good friends, the parents, know CPR they're very good. So, basically, the school, all the teachers know CPR. They're very good. So, basically, the school, all the teachers know CPR. You know we've given a presentation as well. So the community is prepared. You know their community, yeah.
Speaker 2:Their environment, yeah so we talked a little bit about Jasper. He's, he's nine now, is that?
Speaker 3:right, jasper's nine.
Speaker 3:Yeah, yeah, extremely unique little boy um yeah, so tell us about Jasper, jasper, well well, jasper's obviously got the same um chronic heart condition and um, yeah, so tell us about jasper. Jasper, well, well, jasper's obviously got the same um chronic heart condition and um. I should say that both of them are um restricted on sports, so jasper is more of a tech, youtube tech type person, but um, at the age of nine, um lewis is very sporty, but they're not allowed to partake in any kind of sport, ride a bike, that's so hard go swimming.
Speaker 3:You know they have scooters. We've got a couple of electric scooters, you know we do. Let them ride the bike just around the block a short block but I'm running after them with a defibrillator in my back following them?
Speaker 2:Have they been able to learn how to swim?
Speaker 3:Well, they can. They have fun in the water, definitely. Whenever we go to a hotel and there's a pool, we jump in the pool and all of that. And Jasper's learning and Lewis is confident. He was confident before his cardiac arrest, but he doesn't swim laps or anything. There's no way. I mean we have fun in the pool and he may jump in the deep end and get out straight away, but yeah, I mean swimming's not big on the agenda for him for them.
Speaker 2:No, no, I was just wondering if they were okay that they were. They can learn so that if they fall in some water they can get themselves out.
Speaker 3:Uh, well, they can survive, yeah, and Jasper even can now do a bit of dog paddle and float on his back and we're teaching him slowly ourselves. Um, yes, they've got those survival skills, but uh, I can't see them ever being in a position they're not going to be in the Olympics no, no, no, exactly, and uh, we're a water polo team or something, but it's not going to happen.
Speaker 3:But coming back to Jasper, so he's nine, he's very much a gamer and a YouTuber, which is good. They've all got their interests. But he's got the heart condition as well and he's in grade three. So we manage him and he's actually getting support from the same disability institution, Pinnock, that they helped us out with Archie, and you know he sees an OT and caseworker. My wife manages all the appointments we see about three or four different type of specialists.
Speaker 2:So Jasper's on the autism spectrum as well. Autism spectrum, yeah, yeah.
Speaker 3:Sorry, he was diagnosed on the autism spectrum at the age of four. But classic autism, as in very sensory aware, you know, noise and crowds and people and lights and all of that. So, yeah, very different to Archie who is on the spectrum, has Asperger's, but Jasper's very different. And so we manage his world in a different way. You know, for example, he's been to the football with us a couple of times and he loves the excitement of the pre-game and, um, you know we have access to a dining room, so we go there first and but as soon as the game starts, um, he looks at mum and he's like, right, we're going. You know he can't stand the noise, the roar of the crowd, he's just so. So so they go off and, uh, we stay and watch, but, um, but you know he's classic um autistic, uh and uh, yeah. So we just manage his world. I mean, every autistic kid is different, but it's all about inclusion and understanding how they operate in the world and then making adjustments, you know.
Speaker 2:For that and does he go to another, different school?
Speaker 3:Yeah, he's still at primary school, grade three, the same primary school Lewis went to. So when he's ready to move into high school, he'll go to the same school as Lewis, because it's a smaller school, um, there's only about 250 children. They're very good in terms of. You know, we want eyes on the boys 24, 7 or, you know, not 21, for the eight hours that they're there anyway, um, and that's possible. Um, they're great at looking after kids and they get that focus. You know, the the younger two are not academic. They're smart in their own way, definitely, but, um, yeah, so we're not going to send them to where Archie goes so what's um?
Speaker 2:what's day-to-day life like?
Speaker 3:uh, look, it's chaotic, it's just um, work is sometimes um a really nice uh, um, come down time for me, which sounds a bit crazy, but uh, but I can immerse myself in uh meetings and I can, and the work I do and you know, sending emails and whatever else, talking to people, but, um, on a daily basis it's crazy. I don't think people understand, uh, what it's like when you've got an autistic child, one autistic child, or one child with asperger's there was that series quite a few years ago parenthood, which you know, one of their young boys is asperger's Great series, but you don't know what it's like. And then so we've got two, and then we've got Archie with his bowel condition and then we've got the two boys with their heart condition. So it's a lot to remember. But we've kind of got into a routine and my wife is amazing. She keeps all the appointments. You know the pick-ups, the drop-offs, pulling him out of school to take Jasper to an appointment with Pinnock, and then, you know, next week Archie's got the eldest one's got an appointment at the Royal Children's for his bowels. So you know that's scheduled. And then every six months the boys have heart appointments and but you know, and then it's. Every time they change school or something happens there's something to discuss.
Speaker 3:For example, I've just emailed Lewis's who's the middle one, his teachers, because there's a school camp coming up at the end of term two and he's interested in going to the school camp. But of course most activities he can't do he can't go canoeing. He can sit in the back of a canoe. He can't go canoeing, can't do the high ropes because that's a danger to the leads, and the ICD that he has so a lot of activities he can't do. But and the ICD that he has so a lot of activities he can't do. But he can do things like archery. He can't go on any long bushwalks. So I emailed them and now I've got a meeting either later this week or next week to discuss you know what are the activities at the camp. What can we do for Lewis? How do we include him? And that's just one example. The same would happen for Jasper. You know there's often meetings for Archie, because people forget, because he's I don't know, you can't see Asperger's on the outside.
Speaker 3:No, you know, but a lot of his teachers would forget that. He's very routine driven, so and he's very literal. So if you say something he's going to believe it, or you have to take the time to explain something to him. So it's a bit exhausting and we do have a very different life, but I quite enjoy. I mean, I love our family, so it's the way it is right, it's a bit exhausting and we do have a very different life, but I quite enjoy. I mean, I love our family, so it's the way it is.
Speaker 3:It's the way it is, so it's not going to be any other way and we just embrace it and they're all incredible in their own way, right? So it's about making sure and they are all happy, you know and that gives me some sort of strength to see how happy they all are and, you know, enjoying the world around them, despite the fact that Lewis knows he'll never play sport again and the fact that Archie knows he's still in a bowel condition. And you know, they're just so happy and they enjoy stuff. So you know, we would never go on an overseas holiday At the moment.
Speaker 3:We're not flying anywhere, and we haven't flown anywhere for a number of years because Jasper refuses to get on a plane. And if Jasper was the only one who had a condition which is autism and nothing else, we would then go. Okay, let's put the effort into Jasper and let's get him on a plane and let's go somewhere. But it's, it's that. And then it's the fact that we've got two defibrillators to carry with us on the aircraft and take with us everywhere we go, and it's, you know, there's many factors and we think, well, we can drive somewhere, you know exactly.
Speaker 2:Let's just go enjoy it go somewhere.
Speaker 3:Yeah, it's a big country. There's plenty of places to drive. So, uh, yeah, the daily life's chaotic. Um, you know, there was a time after the cardiac arrest, it literally took a good 18 months for me to get back in a good space because, um, when you see one of your kids die in front of you, I couldn't talk about it for 18 months. Um, and and you know where I work has been an incredible support a lot of the people as well but it really took me a good 18 months. And even for me and my wife to communicate properly.
Speaker 3:I mean, we're together and we love each other, but, um, with everything, and then the cardiac arrest, it shook us both. It, it shook everyone up, right, and then it's, and we just I was just getting my head in a great space at the start of 2020 and able to talk about it and all of that and then COVID struck. So then COVID introduced this layer of stress and then we're in lockdowns and then we were kind of we didn't go anywhere because, with the boys' heart conditions, we just didn't want to risk.
Speaker 2:No, you can't afford to right.
Speaker 3:Yeah, covid without vaccines, and this is in 2020, before vaccinations. We were super, super cautious and sometimes my family didn't understand and some people just didn't understand why. We were just always home. And I knew why we were home because you don't take that risk, you know. So it's taken a while. I feel like you know, we're all in a better space now, despite all the challenges and everything else, but we're all in a better space now, especially in the mind as well. So it takes time. That's good, isn't it yeah?
Speaker 2:And I think for most people it'll take time to come out of COVID.
Speaker 3:I think so, I think so to come out of COVID, and I think so, I think so. Yeah, it's um, it's been, it's been life-changing for everybody really, um around the world. It's uh the way we interact, the way we work um a lot of restrictions are dropped, but uh, I see people are still cautious.
Speaker 2:So yeah, yeah. Now I wanted to ask you. I know recently Archie came and spoke to you and your wife and I wondered if you wouldn't mind sharing that conversation, and I'll just premise this with that.
Speaker 3:this is a good story.
Speaker 2:It's a great story. Yeah, yeah, I'm not about to reveal another medical condition.
Speaker 3:No but no, so it was. I do remember the date. It was Thursday, the 13th of February, the day before Valentine's Day, and I was just walking in the office.
Speaker 2:You're good with dates. Neil, You're really good with dates.
Speaker 3:Yeah, I've got a well. Yeah, exactly, I've got a memory for that.
Speaker 3:I'll remember many dates you know, in the history of me and my wife as well. Yeah, she'd go, how do you know that? And I'd go. Well, I anyway.
Speaker 3:Um, so, look, it was a thursday afternoon and, uh, I was in the office working and then archie comes in. Uh, he's all sort of a bit kind of nervous and he had his hands in his t-shirt, pushing it out as teenagers do, and he said oh, dad, I've got something. Um, you know, I wanted to to tell you. You know, I've been meaning to tell you for a while. And I said what is it, arch? Are you, are you okay? You're worried about something? He goes no, no, no, he, no, no. He looked, I'm gay. I've known for a while and I'm gay and I just wanted to tell you and mum. So, this huge smile come on my face and I was kind of tearing up a bit and I just stood up and gave him a huge hug and I said, oh, that's fantastic, arch, I'm so happy for you, you know. Thanks so much for telling me. I was just extremely grateful.
Speaker 3:He told me as well and he said he wanted to tell mum and dad before he told anybody else, and I thought that was amazing as well. So I thought he had the confidence as well to tell us. So he's obviously known for a while before that, but that moment was amazing. And then the next day I went to school, he told some of his friends that night he posted on instagram and he's got a lot of friends, like most kids on instagram, and you know over 100 comments and all the comments are positive. I was reading them just to be sure and just to you know a bit of a dad policeman, but, um, that all really positive comments from all his friends. So he's actually, you know, surrounded by an amazing group of friends as well and that's obviously given him support. But uh, um, that was fantastic. So I wish him all the best and I'll always be there for him that was like a textbook, I guess, reaction to someone coming out.
Speaker 3:I think from what people who've told me and from other coming out stories I've learned, um a lot of people don't have or don't get the reaction that no, archie no, no, and I've learned that actually um, um since then, because I um posted on uh LinkedIn and I also posted um on the company and internal kind of chat site.
Speaker 3:You know, yeah and uh, I had a lot of comments, um, and a lot of comments from people from the LGB LGBTIQ community as well, and a lot of comments from people from the LGBTIQ community as well, and a lot of them said, oh, that's fantastic. You know, you're a great parent, you know it wasn't like that for me and so to me that was a bit of an eye opener, like it was just natural because of course I love him, love all my kids and there's no other way. But I know I can't take that for granted because it's not like that for everybody and some people have struggled with their story and I've learned that. So I'm just happy that Archie, that moment was very positive for him and I hope that, you know, there's a lot of positive moments for him yeah, I hope so too yeah, I hope so too.
Speaker 2:What? What do you think you're going to have to learn as a parent?
Speaker 3:um, probably lots, I don't know. I mean, uh, you know, I think that that I'd like to think society in the community has learned a lot over the last 10 years. I hope I'm not naive there, but I I think, um, you know, it's discussed in the workplace, uh, very openly, and not only discussed openly, but there's a lot of proactive, um, you know, inclusion programs, and I think that's fantastic as well. So I think there's a lot out there, you know. So I mean, he's told us his story. I guess I have to learn from others their story as well, by connecting to colleagues who identify in that way and understanding their journey, because you know, one day he'll bring home a boyfriend, we hope, yeah.
Speaker 3:You know, and I hope that his boyfriend's parents are equally as accepting and inclusive and I'm sure they will be, but he will and so you know I've got a lot to learn about what a gay relationship means. I mean, I've got growing up as well not growing up in my sort of 20s and 30s, you know had quite a few gay friends and was just like any other friend. But I guess as a dad I just want to make sure I'm always there for him and in the right way and supporting him in the right way. So I guess I'm, you know, in that. I think I've got a lot to learn from other people's journeys and what I can take from that. And if Archie comes to me at some time, hopefully I've got some advice, or just listen, you know.
Speaker 2:Yeah, wow, amazing dad, I'd say Amazing.
Speaker 3:Well, thank you my wife. I won't take all the credit Now. My wife is incredible. So, plus, um, um, it takes a village and it does take a village. Uh, we've learned over time, uh, that there's a lot of support out there. Uh, you know, when lewis had his cardiac arrest, we were all rushed to raw children's hospital and we didn't leave. But we had people drive from melbourne up to ballarat to pack clothes for us and bring them back and, uh, we people bring us food in the hospital and you know, and people come and dismantle Lewis's bunk bed and put a mattress on the floor because he couldn't sleep in a bunk bed anymore. He, you know, couldn't get up. There's, I mean, a lot of people willing to help all the time, and we've learned that through COVID as well. Right People come together.
Speaker 2:So it is certainly a community effort. So how do you hope the world will be inclusive? For your kids in the future, uh, to see change maybe oh geez.
Speaker 3:Well, firstly, I'd like to see on the medical side, which is, um, the heart condition. Um, I know that there's a lot of advancement there and you know the most recent appointment we had a month ago, the specialist was telling us that there's certain drugs under trial with adults. They're not available to children yet and they're only under trial anyway. But he was saying, in five years' time there may be different options for your boys, you know.
Speaker 1:And that's great news.
Speaker 3:So I hope that medical science and technology and all that brings about some changes. But in terms of inclusion, I think that's always going to be a journey. I think, to be honest, and I could be again wrong and I could be naive, but I think, with Archie's journey identifying as a gay person, I think that that path has been tread and that you know there's a lot of support and all of that.
Speaker 3:I honestly think that there's not a lot of understanding still in the broader community about what is Asperger's. What does it mean? You know, as Archie leaves the safety of his high school that he's been at for 12 years now and goes off to university, that's going to be a challenge, you know when people are not going to understand, because a lot of people don't understand what Asperger's is and you know, or autism. So I think that's where we still will always put in a lot of effort and I'm an advocate for that. I actually sit on the board of the disability organisation that had supported Archie and now supports Jasper, so that's my way of also contributing there. But you know we always have to push and communicate with the schools and every time there's a new teacher we have to sit down with a new teacher and explain what it is, and I think that effort's not going to change because it's a confusing world there and you know we talk about disability in the workplace as well.
Speaker 3:Straight off the bat, anyone with Asperger's or autism is at a disadvantage in an interview and you can't rock up to an interview and hand over your autism badge and say, look, take it easy. You know, because you're a candidate like anybody else, right? But and I've raised this at work as well when people talk about disability, I always say, well, what about those on the spectrum? You know, what are we doing about those that are incredibly smart and talented but they just can't communicate properly at an interview, so they're going to not show up that well and probably not get the job, and I think that's um, that's an incredible opportunity for the industry as well yeah to create.
Speaker 2:I agree. I think you know we both work um in engineering companies and yeah, um, they often attract people who are on the autism spectrum because it's a very technical job and industry and there will be definitely people in our company that are on the spectrum but maybe have never been diagnosed and they're just treated as a little quirky or maybe a bit difficult. So I think you know there's work to be done with people already in the industry to help them be better and be better understood.
Speaker 2:But also I think that getting jobs for people is going to be really important and we need to work out well what are the things we need to do so that we can understand someone's capability more effectively than just a face-to-face interview.
Speaker 3:I think that's absolutely true and because we don't want people, you don't want anybody to get left behind, and I think that's the ultimate, you know, statement of inclusion is that no one gets left behind and everyone has equal opportunity and to be happy. You know, success is different in everybody's mind, but equal opportunity to just, you know, feel that you've got a great place in this world and you're happy, and so those opportunities for those with disability in particular and I would think my boys with their heart condition, it's a medical disability, I mean, there's certainly a disability in terms of what they're able to do physically. And you know, I just you know it's plenty of work to do. We should never rest.
Speaker 2:No, exactly. Yeah, there'll always be more work to do.
Speaker 3:Yeah, yes, exactly, but thank you so much. Exactly, yeah, there'll always be more work to do. Yeah, yes exactly.
Speaker 2:But thank you so much, Neil. It was so great to have you on the podcast.
Speaker 3:No problem, it's been wonderful, so I really appreciate talking, and it's been great getting to know you as well. So thank you for all your questions. We are a very unique family, but I'm sure that there's many, many, many other families out there like ours in certain ways, and so hopefully this resonates with someone.
Speaker 1:What a unique family. Neil's love, acceptance and support of his boys is unwavering what you would want any parent to be. If you enjoyed this episode and maybe learnt something, please share with your friends on social media. Give a five-star rating on Apple Podcasts and leave a comment. This makes it easier for others to find A Dog Called Diversity.