Episode 1 with Andy and Sam

(upbeat music) - Hi everyone, welcome to the very first episode of ASN Dadcha, Amanda and today I'm joined by Sam. - Hi there. Right, so, we're launching this because, let's be honest, being a dad with a child with ASN can be a lonely shift. It often feels like we're navigating all of it without a map. - Exactly, our main goal is to reach every single ASN dad in Scotland and beyond. We want to make sure that you know you're part of a community and that you're absolutely not doing this alone. We've already got a brewing group where we chat and meet up in person. We want to take those conversations further. We're here to share our own experiences to help make it a bit easier for other dads out there. We've been sharing this, whether it's the winds, whether they're big or small and the hard truths. But a quick heads up, we're not professionals, we're not doctors, lawyers or anything like that. We're just dads like you. Everything here is our own opinion and it's just from lived experience, again, not medical or legal advice. So whether you listen on your commute, join the night shift or you're just managed to find five minutes of peace, pull up a chair. This is real talk, real honesty and real life. This is the ASN Dadchat. - Perfect. So yeah, how you having doing? It's very good to be here. - Absolutely. Just me and Sam today, unfortunately, Glenn couldn't make it. - Yes. - Parenting it as you know, children get sick and unfortunately when you have children, there is no time for anyone when that happens. Anything can happen, always at the worst time. - We wish them well and hope that they make a steady recovery. - I do. - Today we're recording at the studio of Paisley Radio. Big thanks to Paul for letting us use the studio today. - Yes, it's very kind and it's a beautiful studio. You know, it's really up to date. It's done a fantastic job shown as what to do, making us feel welcome and we hope that we hope that we have this as something that we do for a while. - Yeah, I'd be happy for him to host a couple of amateurs in this. (laughing) - So I guess the kind of big question is why have we actually wanted to do this? Podcast, what is the need for a couple of dads in Scotland to talk about ASN? I mean, from my perspective, it's mainly, I've always found podcasts really helpful and learning all about the kind of ASN community and different facts and different track pieces of research when it comes specifically to time I own Sun, but I've always found that there isn't anything specific to Scotland and we'll find even if you were just to go down south on the border, the systems are completely different. I've found that it's really struggle. It's a big struggle to personally relate to that sort of stuff, especially as someone that does find it a lot better to learn from other dads and compare to when you're learning from medical professionals. I don't know how you feel with that Sam. - I totally agree. I think you look across the world. Scotland does it different to England? They do it different to America. Everybody handles ASN and there's so different everywhere. And I know that when we've discussed this prior, we obviously wanted to do this podcast. It's been something that we've thought about that. At the end of the podcast, if we can help one more dad out there we've succeeded in what we're doing. And we're hoping that we can bring like-minded experiences from all different dads with children with ASN. We can bring that to light. And if there's anybody out there that's listening now that does want to be a part of this. Certainly, Lucas Up, we're on Instagram, Facebook. We've got a tech quiz that's doing that at the moment. - Yeah, we get as a working progress. - That's our working progress. - We share everything. - Yeah. - On our various social media pages so that everyone can get involved and you know where to find us. I think the big thing for me is that going for a personal experience that you'll find that most dads don't really tend to talk with their feelings, which is as massive when it comes to your getting even the kind of diagnosis or anything or just having the day-to-day life that it comes with having an ASN kid, as a kid with additional support needs whether that's physical, mental or the plethora of what that could be. I'm always found that it's a lot easier to talk to other dads that are going through that same journey. You can have the best friends in the world but unless they're going through the same sort of life that you're going through, it's just impossible to relate. I totally agree, you know, your best friends in your life, a lot of the time they can be your rock and they can be, you know, everything you need. But definitely they do the best, but until you step into a life like this, you know, with similar experiences, it can be hard because, you know, I think certainly when I joined, you know, and I spoke to a lot of dads who are similar to myself, you know, you get a real feeling of, right, you guys, you guys really get this. And, you know, you really understand, like, I've got three beautiful children at home. I've got a wonderful partner. And, you know, I love my children so much. You know, they're all so different. I've got a nonverbal stepson. I've got a very verbal stepdaughter. And our youngest, he's just starting the pathway. So all three are at really different stages and I'm learning new stuff from them all the time. And that's one thing that we certainly looked at as sharing these experiences and anybody who's going through the same playoff of ASN, you know, if we can share anything that helps, that's, you know, that's something good for us. Yeah, definitely as they're most of the kind of advice and things that I've found, I've found a lot more beneficial just looking up different podcasts or people that have actually been through it, talking to people that are going through the same sort of thing, as a postage kind of reading the kind of different medical documents and it tells you more about what your kid can't do half the time, as opposed to, here's how to help them thrive, how to deal with it. We've went through the same sort of thing. I think it's a lot easier just to speak and make it a lot more normal than you think it is when you're just kind of looking up these different documents yourself. If it's something that you can just talk about over the phone, through WhatsApp, even though you're at the pub, and I think at all, it just makes things a lot easier to go through. I mean, I guess a bit about me, so I'm Andy. I've got a live share of, and we've got a son, Ashton, who will be seven later on this month. And he is autistic. He is going through the process of an ADHD diagnosis, and he also has something called fragile X syndrome. Like you were saying, I am Sam. I have three beautiful children, our oldest, our step-my-step son. He is nine. I met him when he was four. That was not long after he had his diagnosis of autism. Since then, he has, he's developed, he has had Pika, which, if not many people know, Pika, is almost like an under-sensitivity of the mouth. So he choose a lot of items that are not edible. So, but our boy, he's nine, our step-daughter. She's six, she's just on six. She's got a autism assessment very soon. And our youngest, my son, he's three, and he's just starting his, he's got developmental delay. He had numerous surgeries from birth around about his throat area. So we kind of gave him a little bit of leeway when it came to that with his speech, et cetera, et cetera. But definitely from, you know, education standpoint, we're definitely seeing that. He has a little bit of delay. He's a, and he is getting that support, which is obviously great. And, you know, it probably will be a case of, he will get a diagnosis in hopefully the near future. We will see. Yeah, definitely. I think obviously, Helix as well. So with, with Ashton, he got his autism diagnosis when he was three years old. And I think it just shows the, the difference in terms of area to area in terms of diagnosis process. I mean, we've went through a couple of different stages. It was, when Ashton was two, that we started to kind of see. Some differences with him. I mean, prior to that, he, he started to walk relatively quickly. He was, he was able to talk and he was hitting all his milestones. As expected, even ahead of time, if you were to look at it that way. But after that, there was kind of regression after that. And I would say that definitely myself, I was in more of denial, thinking that none of us, but that's not a yes. Yeah, it's that way. So I've got three amazes and this is as well. They're all autistic as well. One of which is the year above Ashton. And at that point, I mean, even now that the forum couldn't be any different out from each other, four completely different people. Do you feel like, sorry, to interrupt you? Do you feel like the fact that you had nieces who were born? Was it one niece before? One niece before Ashton, that was obviously. Do you feel that that prepared you just a little bit? And just gave you a little bit of an, I, and I was kind of the opposite because with Ashton developing and talking and everything in my youngest niece, our oldest niece, rather. was not unverbal and ashtam was a almost the kind of completely opposite he was able to talk, he was very engaging, he was walking, he was talking so I think if anything that made me think no there's this is definitely not autism and I think it was more my wife that was coming round to it more than me I was more, it's definitely not this, definitely not and I remember at one point we had a big list of about 10 to 15 different of the rarest physical disorders that could be explaining all these different things and it wasn't until when they're not speaking to a community nurse about it and they said everything you're saying sounds like autism and then from there they kind of penny drop that I think from what they said just in these kind of various conversations it's always stuck with me in terms of just how different it can be it's that way of the saying is like if you've met one person with autism then you've met one person with autism because they're all completely different you couldn't compare them all to see or you can clearly see they're all autistic together because they're just so insanely different so then I categorise them based on just what they have you know what additional support need to have if you know I think every every child is different we exchange stories all the time we're changing stories with dads and a group and every child you know there's a plethora of different ages involved you know but every every child has you know unique things about them and being able to share that obviously and in the early days is a wonderful thing yeah it's brilliant I think that's where we've always said we have things like we've got WhatsApp chats we have can I meet up so we go and do different things different activities and I think that's a good thing so there is around must be needing 50 dads in the group now and is that so? Yeah nearly up to 50 so it is growing hopefully it does keep getting bigger and bigger as long as it's been growing now I mean how long? Yeah you're not even that in terms of the kind of dads groups but I think like I think that's a good thing because I've said that the kids are all so different but the fact you've got so many different dads in there you can put something in the chat without being worried about being embarrassed and not that and there's usually not every time there's usually someone else that's we've got through that experience here's how you dealt with it or I'm going through something similar and someone else helping with that and it's like basically just having your own huge knowledge base that you can help with and obviously you know where yourself is well that what you mentioned earlier that can be quite a lonely place just being a dad in terms of having to change everything. Yeah having to change everything and I think well we've got these chats that are there for advice about autism and things and different ASN conditions there's also we just have general chats and different days out and nights out because sometimes it might be a case that you might just not want to come in and start talking about all these sort of things you just want to talk about another dad who just gets how tired you are how knackered you are and you just want to be able to just chat away which is again one of the great things to be able to just meet with so many different dads out there. Yeah you gain so many different perspectives and I feel like also with the dads there's a play for a different ages as well you know I'm coming up to Ferry and you know I'm learning new things from younger dads, older dads, techniques that I haven't learned about before that I can use in our home you know like you said being a dad can be a lonely place I think when you go from I think in my personal experience I went from zero children to two and when I met my partner she had her stepson and stepdaughter and her stepson was four when we met I'm stepdaughter was one so I've known them for surely their whole lives you know and I didn't know anything when I stood when I stood and I didn't look you know I got to know my partner and I got to know the story of these children and got to know them better so I went from zero children to two and then I went away to university to study and you very much found out over a phone call that our youngest was Drew and that was a lot of stress to it. Yeah that was a absolute that was a shock to the system that one but you know I was hindsight is a wonderful thing you know I look at it and go there's nothing these three children are you know they're my life they're everything you know and we wouldn't change that but I think sometimes you know we do need we do need help and I think sometimes like you were saying dads can really struggle to talk about things you know yeah and certainly when I spoke with my partner recently you know she was very you know when her son started regressing he really struggled with that and she reached out to a group of children with additional support needs and mums just all grouped together and they were like you can do this you can do this if you thought about doing this you should check this out and I think that's wonderful and I think I'm really glad that we've got that in our group you know and I think a lot of the time you know before before that you know before my partner even mentioned about the S and dads you know I think my initial thoughts were okay I certainly give this a shot you know but a lot of me was quite reserved in the sense that I was like I'm consumed about being a dad I'm not going to have the time yeah to do this I'm not going to get it sort of thing you know I'm very glad that I pushed myself at my comfort zone you know I have some a struggle with things I had in depression myself so stepping out of my comfort zone can be quite difficult and I was glad that I done it because you know when I've had situations come up that I've really struggled with the first place I've put it in as the chat you don't get any judgment you know you get any time of the day there's always someone there you get everybody and everybody's doing their own thing they you know there's some people that work there's some people that don't you know there's some people that you know they're full time job is looking after the child yep definitely and being able to take take the child to all these different places and suggest new places and all of these types of things is so important and we do a really good job of it you know yeah 100% I think it's that weird obviously I know that there are so many different things like I shared in the chat and it is again highlighting that whole how different all these different kids are and how the way different conditions there are but at the same time it just it just feels like you're you're connecting with someone that just really gets it you don't feel that way of it doesn't feel like a group of strangers it just feels like I'm gonna put this in here people are gonna get it they're not gonna they're not gonna just they're gonna tell you that sounds awful they're not gonna with other friends you can have the bit again best friends in the world they're not gonna be the one that says to you that sounds terrible like that sounds like a really bad situation to be in it sounds horrible and have a not even have a laugh about it sometimes because it is it's a difficult subject to be involved in and you don't really know how to deal with it unless you're in the same sort of situation you are there to be able to be like I've been through that I understand that that's a total nightmare and you know when to be able to make a joke you know when to be able to literally just say no Sam that is horrible like you want someone to be able to say and they agree with you be able to get life is going crap right now like yeah if anything else you want that honest conversation you want it to be you don't want someone to be like embarrassed to talk you don't want to end definitely that it's just a great space to to have absolutely um so I certainly think you know that what we're doing is you know it's so important we really want to make sure that we are reaching out other people and we are you know being as open and honest about what we can offer yep you know I know we have um we have nights out that we plan we have you know rest and relaxation yeah so important that people understand the dad's desire of these things you know I think something that I know I've certainly spoke about before is you know trying to find the balance between being yourself and being a parent yeah you know I imagine it is you know a scale and sometimes you know during you know I'll have a week where you know the the dad side is just so high up and you know I've barely even thought about yourself you know you're almost going to survival mode it's eat sleep repeat you know and make sure the kids are up and getting them ready and making sure they're fed you know and it's about trying to find that balance it's so difficult you know I think I don't know if I can I don't know if you can relate but it can be so difficult you know trying to find that time especially if your child's having an off day yep you know it can be so hard you know and you just have to do what you can yeah and I think it's that way where it can just take you can be having a great week and it can just be one thing whether it's work or something at home or something with your kid and it just totally sets off your full week that you do just go into total auto pilot mode because you need to it's that whole essentially can have that whole fight or flight thing because you're having to really just switch into just kind of super dad mode to be like I just need to get everything by I can't think of myself and then it gets to end of the week and your your head just full of just everything you've not spoke about and it's that way where you do just need to offload and I think something that can be difficult to want to then offload to your partner because you know they're going through the exact same thing and it might be a case of they don't have the capacity to listen to that either so it's that way you've got that welcome space and whether it is just sticking a message into the chat or are jumping onto one of the calls it will have and everyone can relate to you. So it's definitely something that I'd recommend if anyone out there is feeling lonely, feeling anxious, they're in a thing at all and they think they can relate to that, they definitely drop some message. Even if you know it's one of those that, even if maybe you know somebody close that has a shared with ASN, it doesn't have to be just yourself. By all means, we certainly won't turn anybody away. I think anybody that we can help, no matter what, that's definitely what they're doing. It's going to make their lives better, it's going to make their kids lives better. Yeah. And we can build a good community, we can build we can build the best world for our children. I think the certainly something we've thought about before is preparing our children for a world at the moment that's not fully prepared for them. I know, certainly like you said, I haven't had the opportunity to actually receive a diagnosis. So your input is fascinating to me because I've never had that yet. It may come with my youngest, however, it's not happened for me yet. So when I met our oldest, he already had his diagnosis. And I know when I spoke to my partner about it, she was very much the same, she was very much in the denial process of there's no way that this could be happening. It was actually a little bit different because his actions, he was starting to do things. The peaker was starting to show. Yeah. We were starting to eat things that he wasn't meant to eat. We were starting to chew things in the house, all of these types of things. From, I think, from when he was born, nothing until about one and a half, he was actually meeting all of his milestones, kind of like what you were saying about Ashton, and I think after that he regressed quite significantly. I, at part, you get a glimpse of what your child can be. And I haven't seen that, certainly something that's completely new to me. And I haven't experienced it yet, so I do find this fascinating because it may come with my youngest. So I find that quite fascinating. Again, this is what we're talking about, where we're sharing different experiences, you know, and there's certain experiences that I have that you don't, and you have experiences that I don't, and we can pull all this together and that's certainly the goal that we're trying to do. Definitely, and obviously it's myself and Sam that's on it tonight, but there is a group of dads out there, and when I was just looking to take a one to the podcast, share whether you want to touch up, sharing advice, you're just wanting to get in off your chest, like we're looking to, to essentially make a, like kind of like a big kind of knowledge base, so if you come to it, and maybe you're in kind of Sam's situation, or his youngest is going to go through a diagnosis, and you're not sure what to expect, then it could be a case of listening to some of these podcasts, get on the groups, come on and have a chat, tell us how you feel, because it could be a case of you're going through exactly the same thing as someone else, or something that someone else just went through, and they are quite happy to help you. And I'm always happy to talk about any experiences that I've went through, so yeah, anyone at all don't hesitate, as I say, there's multiple different chats, you're not expected to come in and chat every single day, you can be there, and just watch, she don't have to be including at all. You may just want to tune in for events, for example, I know a lot of dads, you know, they have so much going on where, if they see an event they're up for it, or you may get dads delayed to chat with general things, I know, you know, footballs are discussion, we have lots of, you know, watch out movies, movies, watch out child's club, too, maybe, you know, something, I know we're referred to it a lot of small victories, have the time, it can be, you know, while my son, you know, my son on my daughter done this today, and you know, it's a step in the right direction, and sharing that with a group of people, especially who, you know, are in a very similar situation, it's so gratifying, you know, and I think I certainly see it sometimes when, you know, somebody said something in the chat of, oh, my son done this on my daughter done this today, and I'm like, oh, it just feels, it feels, it makes, gives you a little bit, like, it just gives you a little boost, you know, and I think it's wonderful, and I think as dads, especially, I think we go, we go in overdrive, you know, we plan everything, you know, we've planned, we've planned this podcast so much, you know, and I think we were worried about how we were going to be, and I think it's a pair for the pair for the analogy of how it's waiting, setting all day, planning things, different topics, and different talking points for it then to go from these speakers to two, and it's just exactly how I'd like to be, that's painting thing, isn't it? You know, I, I, you know, there's nothing worse, when your, your child is not well, and I know when my oldest, when he's not well, you know about it, because everything is agony, you know, a stuff that knows can be crying relentlessly for others, you know, little things like that, and I think that's a lot of the time as well that even with, obviously, we're not getting into the diagnosed illness as chat, but it can be the smallest thing, the blood knows, I know for Ashton, if he's got a call friend, they obviously don't really understand what's happening to their body or so, absolutely, half the time with Ashton, we can usually tell if he starts to have a little more meltdowns, or if he's behavior changes quite drastically, we can tell usually there's something happening, whether it's a sore stomach, or like something that could be a sore throat, it's anything at that point, especially with that child with a kind of limited communication in terms of kind of things. It's taking you a long time to understand these certain cues, exactly, you know, and I think it really ties in like what you were saying, obviously, since you've had this diagnosis, you know, as a dad, you've had to learn very much from the ground up. Yeah, it's like a field degree, you have to get pretty much your own kids, because it's not, I mean, you go through like a kind of full pregnancy or trying for kids and having this idea of, "I'm going to do this with my son, or I'm going to take my daughter to this," and then obviously get these diagnosis and everything's kind of thrown at one, yeah. It's definitely the window, it's not a case of, it's not the kind of easy route in terms of, "This is how you deal with your kid, this is what they're supposed to, that's all different, and it's again the whole thing of having autistic kids or kids with additional needs, they're all completely different, so it's not as if you can even go online and say, "How do I deal with this?" Because nine times at the time, it's totally different. Oh yeah, you'll get Google searches about, you know, a study that's been done on, you know, neuro-typical children, or maybe a certain group of children who are completely different from us. There is, just like with parenting, there is no answer, you know, there is no instruction manual as to how we do this. Every day is a challenge, every day is, I think that certainly makes it exciting. Yeah, you know. I'm trying to put it in as definitely a lot of trial and lots of care. Oh for sure, and I think, I know, certainly, you were talking about the diagnosis and that must have changed your perspective on, you know, asking how he's going to progress. Yeah, and I must, that must be so difficult, like I haven't been through it, so I don't know if I'm going to feel similar when my youngest, if I'll say if my youngest goes through that, we do think there's a large chance of it happening, however, I'm not going to say that. I think it's the definite. Even if you go into these things expecting, I'm going to get a diagnosis, I'm going to get it, but as soon as it's different, you don't know how you're going to react when you say, okay, here's a diagnosis, because you have no idea. I mean, from me, I say, Aston was diagnosed, autistic when he was three, and it did take a while to even understand what that meant and how to really work with Aston and let him kind of be as best as he can be. I mean, Aston went through various different stages where I think it was more a case of we had to understand him, we had to go through a huge learning curve to work out and really get your head around it. I think I don't have to, Aston doesn't have to adapt to different things in the world, like you need to make the world adapt to him. He is the focus and I think, as soon as we switch that, it did change things massively. I mean, then the difference with Aston's diagnosis is we got, as I say, the autism diagnosis when he turned three, but when he was four, he went through genetic testing, which is something that's kind of optional as part of the autism diagnosis, and it came back that Aston has something called fragile X syndrome, which is something that I had never heard of, from most people I talked to, had ever heard of. Can you elaborate on that? I just, that I haven't, personally, I haven't heard of that in any of the day that I know. Yeah, definitely, as again, I say, it's nothing that I had ever heard of, but what fragile X is, and again, this is not specific, 100% medical chat here, it's just, that's basically why I can try and articulate it, but basically what fragile X is, is a genetic condition that's caused by mutation, and a gene that's called FMR1, on the X chromosome. So with this being an X chromosome related condition, it affects the males a lot more than the females, because the females have their extra X to kind of coincide that there, whereas the males only have the one X. Now, film mutation of this particular gene, it causes it to turn off completely, and that stops the production of a particular protein, which is needed for brain development. What that does is it causes intellectual disability, it can cause various different physical features for them as well, and it can also cause things like autism and ADHD. So with Aston, the fragile Xendronus has main diagnosis and then he's also got autism, he's got ADHD. I mean, for us it was a huge shock because. - Can I imagine, yeah? - Yeah, I mean it got to the point where I hadn't thought of anything going to commit to this testing, I'm an ECS through the same testing, nothing commited. It's what I hadn't even had a thought. I was like, we'll do it. If N, it's going to be positive to give us a bit more of an idea. I had no idea it was going to commit to this. It's fragile Xendronus. With that it was. a huge learning. I mean, I can remember when I even got the phone call from my wife. I was just about to go into the cinema and I was sitting there and I was like, "For a fragile Xendron, what's that?" I'm sitting there waiting for the film to start and I'm just kind of on Wikipedia looking up and then I just started kind of bursting it at tears reading through how it's going to be. He's going to need kind of lifelong support. He's sort of things and it's a sort of stuff that when Ashen had. He's autism diagnosis. I always had it in my head of which way or thing was going to go. Is it going to be able to support himself or is it going to need full time support? I was always get frustrated at. you just wish you could look into the future and see how it's going to go. Oh, for sure. I mean, I was now at the end to have that uncertainty again, almost. So yeah, it's been a huge learning journey and the others kind of flip side to fragile Xendron. Is it something that's inherited? So what this is meant is that we found that it was passed down through my wife. Right. It's meant that she also has a kind of version of fragile Xendron, which is it? But she's got the extra. Yeah, so she's got the extra ones but she doesn't have the full mutation. I won't get into full details of it, but it essentially means that she's got some difficulties as well and it's meant a lot more looking into the family and things can support. But in terms of fragile Xendron, there's not a huge community out there for that. We do have a group which is great in Scotland to connect to all their parents and have that chat similar to that we've got the dad's chat issues good again to speak to anyone because there is a lot of information online about things like fragile Xendron. But I find it a lot better and kind of more personal where you can speak to people that would through the experience. So yeah, I mean, hopefully that gives you a whistle. Thank you for sharing that. I can't imagine that's an easy thing to talk about. I think it was almost like a double diagnosis. You kind of get a head around of autistic. We're kind of going through that now, we understand things and then it's almost. I mean, don't get me wrong, the fragile X diagnosis. It was hard to go through but then reading through it. It just explained action to a tea but things like great censorship and my actions and amazing boys always laughing. Like you're a complete mimic. Everything it does depend who he's been speaking to. You hear different accents. A lot of the time it's things like mis-reachers accent. Yes. Different things like it's helped him. It's like almost like an Americanized accent. Exactly. My step daughter, she's like that. She constantly refers to money as dollars. She watches a lot of American YouTubers. So influenced. Yeah. So I do understand that certain aspect. And I don't know about you but I've found a lot of time with Ashton that a lot of his speech and a lot of the thing that he's learned has came from. Different things like whether it's YouTube or watching certain videos and he's learned and then kind of understood the context around it in that way. But it does mean that our house just has a mixture of different accents and different things that he wants to do. Playing with specific toys. So yeah, I mean, he's a brilliant little guy in terms of his personality but it does come with its difficulties. But I think if anything, it was a difficult diagnosis to take but it is where Ashton is. It sums them up very well. I think something I would say and I would say I'm obviously very much neutral on this. But certainly from what you're saying, something that strikes me is that you've adapted, you've learned. You a lot of times what dads do is they plan. Yeah. What we were saying before, you know, I remember when I started to really understand my oldest, you know, understood that he had autism. We thought at the time he had ADHD but it actually turns out that the ADHD that we thought it was was actually learning disability. Okay. It just presents very similar. But he obviously also has beaker. Like you said, it was that kind of doubling down of, you know, it's not just, it's not just, you know, it sounds bad to say, you don't turn around and go, it's not just autism. I think you look at it and you go, well, this means that, you know, your child is in quite a peculiar, you know, a percentage out there. I know that, you know, our oldest, he's going through an assessment at the moment for his learning disability to see where he is. And he, at the moment, is looking, I believe there's four different categories. I believe he's between like the second, last and last category, which we kind of already knew, but at the same time it doesn't make it feel any better. I think we always imagined that one day he would be able to live independently. It's now looking that he's probably going to need assisted living one day. It's difficult to, yeah, it's trying to arrive at the end of it. It's even if it's you that came to that kind of assessment, it's still difficult for you to think, because if everyone's obviously got that thing in their head of, you raise your kids and then your kids raise you. Yeah, I think I'm very, I was brought up in quite an old family, so I think I had very old school thoughts when it came to children. So I know something that, when I first met the kids and I was properly looking after them, was, you know, they would have dinner. And if they didn't finish the dinner, they would still ask me for treats. I'd be like, well, no, you've not finished your dinner yet. And I remember my partner turning around and saying, no, no, no, that's not how we work. It's not how we work, yeah, we don't do that. But I remember that threw me for a look and then understanding the process of, this is the food, they are eating until their body tells them. And that was fascinating to me, so learning all about these different conditions and all that sort of stuff, whilst, you know, understand, we can't have certain toys in the house because our oldest will rip them apart. And you know, something that's notorious that you see in lots of shops is like sensory toys with foam in them. So our oldest, he will gladly rip them apart and eat the foam out of the middle. You know, in general, ball was never thin. Yes, we changed, I remember I came home from school once and I went and changed his nappy. And it honestly looked like it was like fish eggs. And I remember being like, right, either this child is an alien or he has eaten something that I have no idea what it is. What it is, we thought we'd end up at the school and we found out it was Orbeez. Well, he had, and this is, this just goes to show, our children with autism are incredibly intelligent. And I think that's quite a misconception sometimes as people look at it and they go, right, well, they can do certain basic things. Therefore, they don't have a lot of capacity for, oh no. They know what's going on. Yeah, they can get it if they want something. Yeah, one, so one time in school, he, he noticed at the corner of his eye that it was a two handled, pronged door. And one of the handles actually didn't have to be open for the door to open. Right. But every staff member still mimicked it. Yep. And one time out of like the two years he was there, the one time the staff member pulled that, opened it and didn't have the hand full of touch and the bar. He clocked it, opened the door, went in at the classroom, ate a bunch of all these toys. So I, you know, and I think at the time you think about it and you go, oh, good lord. But now I'm like, honestly, that's, that's phenomenal. Yeah. You know, and it's just, I would give anything to step into their brains for a day and see how they live life. You know, and I think sometimes, you know, ASN, certainly, you know, there's so many additional support needs. We were talking about it before. There's physical needs. Yep. There's, you know, there's so many different needs out there. And there's not enough resources. You know, there's not enough out there for these children. And it's, it's awful, you know, I know families who are going through allocations at the minute. And that can be really difficult, you know, and that's where it's good that we have this support. You know, I certainly know that when, when my youngest, when he goes through the allocations, if we don't get the right place for him, I'll find that very difficult. Yeah. Because you know what your child deserves and trying to make sure they get that, you know, your everyday can be a fight, you know. You know, it's easy as possible, especially with things like school. I think that's, I think in terms of services or places to go, it's very difficult because even where there is these services or where there is places to go, it's not very easy to find them. And I think it's something that we'll probably talk about further down the line. Absolutely. That we can recommend. We would personally recommend or things that we have found useful. And it is definitely a huge topic. If anybody knows any, please recommend them. That way we are open to all ideas. Definitely. Because it's usually a bit of a needling of haste that. Try to find somewhere that the ASN kids can go. So definitely try it if you can hear anything. But yeah, I think it's that way of just when you were saying about your oldest one you had. Obviously the learning delay and the autism and the pica. It's that way it almost feels like it's as soon as you get all these different diagnosis, you're kind of a community in your world just shrinks that bit smaller, to be like, I've got less people to relate to. - Yeah. - And that's certainly how it felt with the kind of fragile X syndrome for us. - That was really, yeah. - There's no one else we know with this, and that was, it was getting, until we ended up reaching out to someone where called the fragile X Society, and they were absolutely brilliant, put us in touch with a local group, and I meant we were able to get in touch with different parents who have went through various different stages of journey, and again, it's as soon as you find your people, it just makes things a lot more relaxed, and to understand that you're not going through it alone, and I think that's the main message you want to get out for everyone that you don't want to be going through us alone, whether you want to come, join in the chats, don't be in the chats, come in the days out, or even just listen to this podcast, if you don't want to end to involved with it, just have a listen. - You can actually join the chat, I know a lot of people that join the chat, send the occasional message, I know I'm in a position where, at the moment, I'm a stay-at-home dad. You would think that would have a lot of time to contribute to the chat, however, with three children. Well, most of the time, it's three, if not two, one of them goes to school. You're flying around the house trying to get everything done. - Definitely, we've been seeing that other day, and we're having a chat about this podcast, and you had your youngest involved in most of the call to address us. Yes, we were on our call discussing things that we can talk about, things that we can share. My youngest came over, he was very interested. His language has definitely picked up as of late, which is obviously a wonderful thing. And he is doing well, he's moved up into the 30 to 5 room in nursery, and he seems to be doing quite well. I think nursery is his kingdom. Everybody knows that my youngest he beats his own drum. - He just doesn't care. And it's hilarious because he'll go outside into the pouring rain. He'll do, he'll like lie and he'll do, start to start. Start shapes and puddles. It doesn't matter how many clothes he goes through, he just doesn't care. - It's not, it doesn't have to be. - He falls asleep under the sand tree. And he's happy. - Exactly. - And it's one of those that you wouldn't change them for the world. And we were talking about this earlier. There's so much that I think we would change out in the world and we would make things more accessible. We would try and reach out to, you know, write at the core of a diagnosis. We would want these services spread out far and wide. We want you to feel like you're part of a community. Straight off the bat and you're not navigating things solo or, you know, with your partner or whatever your situation is. - Yeah. - So yeah, I think it's, I think for us, we just want to make sure that we're reaching as many people as we can. You know, like we've talked about already, we've got so many different stories. You know, our lives are completely different. But yeah, we have this common ground, you know, and I think that and itself is something that's really useful. - Definitely, no judgment. - Nothing there at all. - Absolutely. - Same. Yeah, 'cause I think different people handle things in different ways. But I think, again, kind of jumping back to that diagnosis, like for me, I just wanted as much information that I could tell you everything about it. You want some sort of answer. How can I help? How can I do that? And it only teaches so far, so then you start listening to every podcast you can find online and everything you can read. And then even from there again, it's kind of jumping back to that that a lot of the time when I was listening to these things, there was nothing that was specific to Scotland that you generalize as much. - Yeah, it's quick generalize, though it's to do with different pathways or it can be a lot of things that talk about a lot of medications and stuff, whereas there's nothing that I could find online secondly, that was specific to Scotland. That's why I thought it was a huge gap. And well, obviously we're saying this is mainly Scotland's specific content. We would be happy to reach out to any dads all over the world. Anyone that's feeling alone or just looking to have that chat then anyone is welcome to this. So they say don't hesitate to reach out to Scotland. - I think it's so important, you know, no matter who you are, you know, no matter who you are, what you look like, where you live, you know, I think everybody who has a cherry with additional support need has that same level of, you know, it's straight, I'll say stress, you know, you have that expectation. It's almost like you have really high expectations that you need to set and achieve this. And you need to make sure that you know everything for your child when in reality, they don't know everything for themselves. - You're the biggest advocate, you're the one who has to fight for everything. - Absolutely. - It is very difficult and it's difficult to kind of avoid that, I mean, you can be sitting there, you could do something yourself for a day and then you automatically feel that guilt should have been more for my son, should have been looking this thing up, should have been doing this, should have been helping them with this. And I think it's natural to feel a certain amount of guilt, but it's also difficult to just switch off. And I think what you said earlier on that it's massive, you need to switch off, you need to take some new time because otherwise you're not going to be the best person you can be for your kids. - Oh, for sure. I know, I made a new year's resolution this year that I was going to be consistent and I was going to go to the gym. I was going to feel my food prep. I was going to do all these things. I'm on my weight loss journey at the moment. I've lost about three and a half stone. So it is going well, thank you. And it's one of those that I'll be honest, I don't go to the gym right now. I've, you know, so many things have happened at home. You know, where, you know, my oldest, he's become more of a full time responsibility. All of these things, and you do kind of sit there and beat yourself up, you turn around and go, I should be doing more. You know, I should wake up with all this energy or I should, you know, and then you have to, you have to have those moments where you sit back and go well and let's think about this logically. Yeah. You know, I'm only maxing about four hours sleeping out. You know, I'm up for 20 hours, those times where, you know, if my oldest is, you know, he's a flight risk. So he, honestly, he gives him, he could give food in the air on for his money. And honestly, he's unbelievable at it. No, I wish, it's one of those things I wish he wasn't unbelievable at it. But, you know, it's things like that where they do, things that make things difficult for you, but at the same time, you're kind of, like, kind of impressed at the same time. Honestly, yeah, like, there's so many times I'm sitting there and it'll be, it'll be something, it'll be something completely new. Like, I know a month ago, our oldest, he actually was gone, did from, from the house. And it was an absolute nightmare. Woke up in the middle of the night, at least coming to the door, letting us know what, letting us know what happened, they'd been out for hours in just his nappy. And it was traumatising, but, you know, it was one of those that they were actually explaining the situation of what everything that he'd done. Yeah. And it just, I was sitting there going, I don't know whether I wanted to applaud or I want to cry. Yeah. You know, it was just one of those that took, I think it was 20 odd police officers, and nearly half the fleet to chase this kid down. Let's just, and I'm like, honestly, I don't know whether I should be impressed or not. Like, I watched cops when I was a kid, and you would see all these chases, and I was like, oh, it's good to get caught eventually. And then, apparently, my oldest day outrun 20 of them, I'm like, all right. That's one of the qualities, you need to try to tap into and figure that way, you can twist that into some sort. Honestly, it's unbelievable. You know, that was quite difficult though, in terms of, obviously. I think you lead when you got them back, but it must be quite a frighten things. It's, you know, you didn't, honestly, I think, when I seen them, because you heard them, it was quite distressed when you got out the police car, and then you came in the front door, and I think my instant reaction was, I didn't know whether I wanted to, to hug them, or I wanted to just grab them, but they were like, why did you do that? Yeah. You know, but he doesn't have that understanding, and that's something that, you know, I think, you have to, you have to almost take a step back, like in the moment you have to sit there and go, why did you do that? He doesn't have that understanding. You know, he just seen it as, oh, I went for a, I went for a job outside. Yeah. I don't know, he didn't know the risks. So where we live at the moment, there's the second fastest driver in Scotland, is in front, just in front of our house, to the behind us is train tracks, and the motorway. And then to the right where he went along, he went through the next town over, onto the Joe carriageway, pitch black at night, where it's at 60 mile into a road. Honestly, he came home without a scratch on him, and I'm like, there's got to be somebody out there that was looking after him because it's a miracle on itself that nothing happened, you know? But it's definitely something that affects us, you know, I think the way I am is a dad that I try and put a bit of humor on to it because I think if I sit and think about it, you know, with how I am, I can really overthink it and get myself, yeah, get myself into a dark place with it. You know, so I think both me and my partner, we are dealing with it in very different ways, you know, and we're doing that, you know what, it's definitely gave the relevant authorities, you know, I kick up the backside, let's be honest, about what needs done now, and he's hopefully getting on the right track to get him the support that he needs, you know, which is obviously what we're hoping for. Yeah, and I think is that we just gone back to listening about how we saw you and your partner. doing with it in different ways. I think that's always a massive part of things because it's what you always kind of hope is that when one of you are feeling down you've got the other one that can kind of pick you up sort of thing because it is, yeah, it's massive and it's a difficult life to be in. It's that way you just, you do need to kind of align each other for support, it's when it gets to those points where you're both very low and it's difficult and just, that's probably the whole kind of self-care is massive just having those days out and just be able to reload because you know you're going to have a difficult week if you're able to go out and have a night with the dads or a day with the dads or anything that you can just switch off from having to be that ultra-vigilant dad for a couple of hours then. I think the benefit you see is huge, I mean from you personally anyway. No, I totally agree, I'm the same, you know, I think something my partner has been really good in that sense, we kind of work it out. My partner has a lot of health conditions as well so we try, you know, it's one of those that I am happy to take on a bit more, you know, I do the majority of the night shift with our oldest, he can get out of his room kind of anytime he wants, so one of us kind of needs to keep an eye, he likes to read the kitchen etc, etc, it can be an absolute nightmare. But at the same time, I don't think I would go to sleep knowing that he was still awake. I like to be, I don't know if this is just a quality that I have but I like to be the last one up because I feel like everybody's in the room, everybody's sleeping, everybody's safe, now I can rest, you know, and so they're all tired and as well but at the same time, I don't think I would be able to sit otherwise. Exactly, you know. And I think that's something that, you know, there's things that I do more of and there's things that my partner does more of and we kind of equate it like every Friday, I have after dinner, I normally go into the room and I'll play my games for, you know, three or four hours and that's my time, you know, that's my time to go and tune out, you know, I love gaming, I love sports, I go, I go, I play football every Sunday. Another thing we're trying to arrange, that's the performance. Yes, I hope, at least one point. I think everybody's scared to change and I think that's the, I think that's what's been going on but it's one of those that the more people we bring in, the more people we can get in the moment and we can kind of make it, we can then turn it into, you know, a consistent, like, whatever you are. Ideally any sort of ESN dad with good organizational skills, that's what we're looking for. Any ESN dad who stops will take you. Absolutely, listen, you know, I say it all the time, like, I, like, I say it to my partner all the time, like, I'm a big, I'm a big nerd. I love all things that are like geeky, I like got marvel, I like, you know, gaming, I like football, all of these types of things and I was welcomed with home norms in this chat. So if I, if I, if I am, say it with a nice group of tests. Oh yeah, if I, if I, if I said it would well into this, this group then anybody can. I remember just going back to the game and the thing that I would barely ever do any sort of gaming, but I remember when I asked him was first born, everyone's in a while, I'd be like, okay, I'll get the PlayStation out, turn it on, I'll get it in there, I'll get it turned on, straight away, turn it on, 26, I would update. Oh, good. So then it got to the point where this has to go in the bin, I don't have the choice for this, I think that's what I'm in the game and ended then. Yeah, I'm in the, to be fair, I grew up with like the PlayStation all the way up, and then I stopped for a while just, I would play games that would agitate me and then just I became unhittingly so I gave it up. But then I remember I was sitting with my partner and she was like listen, the way things are at the moment, you're always home. Yep. So you're not having that social activity and social, you know, you're not being able to be social. So she was like listen, I know that you're game in the past, but I know now that you can game true now, go help the kids come back. You know, so I play on the Nintendo Switch, that's my, that's my, that's my vice at the moment. Nintendo Switch and then we've got any Xbox, but I mainly will use that for watching Netflix, so there's the plus or something fun. So I think gaming is not something we've looked at, I mean look at the page, I had something for that, so I'm sure there's more dads that play these games, I mean, I probably wouldn't do it, I'm absolutely shocking at it, I don't want to highlight how bad I am at it, but I'm sure that even with all the dads at it and then I'm sure that we'd love to have some sort of gaming, because I say you've got that for chats as well, so it's definitely something that we can have. Oh yeah, I think we've got, we've all got such different life expedients, we've got such different interests. Yep. And I think that that's what makes everybody unique. You know, nothing's off the table for these, absolutely anything that anyone wants to suggest, so we're looking to sit up. Everybody had to meet to go back in at Kari Okie and I'm like, I'm still, exactly, that's Kari Okie Sam, you've got an info yourself, you've got your dad, you can get yourself a name, because it can be anything, we're looking to start regular, kind of, curry clubs, like what, different quizzes and things, just, a quiz name would be to our brilliant. Exactly, something that we can, I might use my useless knowledge, yeah, I need some ASN specific round and that's it, yeah, and we can kind of highlight our skill in that area, but yeah, definitely anything at all, you can think of our, even if anyone's are to reach out, if you've got a question, we're not honestly here. Yeah, we're happy to answer, if not, if not one of us is free, somebody else will be, that's that's kind of the go-to in the chat, you know, there's 50 dads in there, all it takes is maybe one or two to give you, and then it's didn't response and give you some really good pointers, yeah, in the moment and then, as the day progresses, dads will tune in at different moments and provide their input, you know, I remember when, obviously, my stepson, he did, when that event all happened, and I remember, I posted it in the chat because I was like, I need to speak to somebody, yeah, and dads were coming through at different points of the day, go and listen, you know, this isn't your fault, you know, these, these things happen, you know, hopefully, that this all, this has happened, we can now start getting things done, you know, I think that's, I think in the moment, not, because sometimes you want to hear things from other people that aren't your partner, with the greatest respect, because you know, you know that they are, you know that they are going to tell you what you want to hear sometimes, but sometimes you just want it from not so much a stranger, but you want it from somebody that doesn't fully know you and understands the situation you're in, you know. And that's where the deal is to do it, because there is certain things people have said, and we're not always just going to say, you know, you're 100%, right? If there's any sort of feedback they're in, we're going to tell you, we're going to say, have you tried this, have you tried that, how did this happen, sort of thing? So yeah, definitely, you're not just going to get kind of pandered to, which is obviously good, because you know that there is obviously people actually looking at it for you as well, and it's that way as well as I remember even after it obviously happened with your stepson, it was obviously for even time to after that, people are still asking, is everything okay, all these sort of things, so I think it is that way we are such a kind of close community, people are looking, they're looking at it for each other, and it's a bit of a hassle. But simple thing is like, I know that some of the recent talks obviously been, some of the ones looking at a new car, and the advice going in about what cars are good, you know, I think, was that we have a mobility car, so hours goes through kind of every three years, we get a new one, etc, so I couldn't really contribute too much to that, but lots of dads were coming forward with really good advice, you know, and I think it's certainly gave me something to consider them, like, oh, I might have a look at this, the next time, you know, our car comes up for for a new one, so there's so much information, there's so much knowledge, and you know, we're trying to create a community that, you know, there's no judgment, everybody that you're not alone, we've said that, we've said that, you know, you're not alone, you know, whether you need help right off the bat, or whether you just want to feel a part of a community, or you just want to be a person, so you're discretion, you want to be away from the whole, you want to come into the chat, people that get it, but you don't want to talk about ASN stuff, totally fine, like, we don't, it doesn't have to be that, absolutely. I mean, going forward, we're hoping to use this to try and give as much advice as possible, whether it's talking about help with going holidays, traveling, it could be things about different places to go, navigating different services. Just a, it's like, kind of a deeper dive into the life of an ASN dad, you know, I think, like you were saying, like, planning on going to places where, you know, good, lots of good places to go, you know, lots of resources to use. Yeah. You know, there's like lots of different things that we can contribute. Yeah, we'll do it in, we can help each other, and it's that way we're all there in this day, we still get a lot of it. Yeah, I mean, I guess just to kind of, to wrap up, we're glad you're here, we're glad you're listening to us, hopefully if you can kind of continue this journey. Again, you're not alone, and yeah, we will catch up with you on the next one. Thanks a lot. Bye. Thank you. Thanks for listening. If you want to get involved or get in touch with us, you can find his own Facebook or Instagram under ESN.chat.