Episode 2 with Andy and Sam

[Music] Hi everyone, welcome back to ASN DadChat. I'm Andy, I'm here with Sam. Hello, you are a podcast and a community dedicated to making sure no ASN Dad in Scotland has to walk this path alone. As before, I'll go simple, real talk, real honesty and sharing our own experiences to help you navigate the system. Whether you're in army up groups already, just finding this now, there's always a seat at the table for you. Again, just a reminder, we're not the experts, we're just dads who've had these experiences ourselves. It's all lived, and it's just a pinion, not medical or legal advice. Now let's get stuck into today's chat. Perfect, I'll kick things off, I'll ask you how you've reeks been. But to be fair, this has been a bit of a heck-tick week for us, so we have had huge problems with our flooring in the house, and that just kept popping up. We just met and we've had to get it all ripped up, we get the floor slided, now it's part of that. It's meant that it would have to get out of the house. We had to essentially book a hotel to take action out, so this was a whole military operation on the Tuesday and to the Wednesday, but essentially pack all the bags, get all these toys as you know, get these specific plate-it-let-off, get all these foods that you would eat. It was about four or five bags for one night in a hotel. The plan was simple, they'd go to school, they'd go to his after-school, and then we'd take them to a soft play after that, so we would give out to the hotel at eight o'clock, bed, hope that he sleeps through, and I say sleep three or talking about four o'clock in the morning a good day. On that, then back to school again, the same sort of thing, and back in house by Wednesday. Oh, it's not too much of a change to his routine. Exactly. Perfect plan, everything's all good, as you'd expect, until he gets sent home at 10 o'clock in the Tuesday morning, meaning you can't go back to the house, have to see it was the all right, or. I mean, when he came, he just had a bit of a cough, but it was just that way of he sent home, we've had to leave work, had to try to get early check into the hotel, and then from then we're stuck in the room to check out the whole day. On the following day, 12 o'clock, so we couldn't get out in the hotel seven o'clock at night, so it was trying to go from pillar to post to try and keep on occupied, just that we have, everything was so well planned. The throw is it all. Exactly. That would work, doesn't it? Yeah, I mean, we're back in the house now, thankfully, but yeah, it's just that we have, everything was so perfectly planned. I had no idea that there would be any sort of issues, but of course, just the way that these lives that we live are, everything had to go into chaos, which is why you just, you just feel that you've got so much life experience by this point because I've met the stuff that you've had to go through, but I mean, other than that, yeah, there's not been too much happening, that's been the kind of, the main thing so far, well, but yourself as you're being? I just quickly talked to you in what you were saying, now I think it proves that no matter how much you plan, there is always room for something you don't expect. Exactly, you should always expect that, and you know, when it comes to children with additional support needs, you know, you have to plan literally everything, I know you were saying they were planning, you know, what it was going to eat, what it was going to wear. Yeah. Everything, you have to almost, you know, every schedule, I don't know, it sounds tedious, but if you keep his, if you keep his activities the same, like you were saying, you know, going to school, when you have to school, taking them to a soft place. Exactly. It keeps that routine, and it's something that, you know, routines are going to be something that we're going to speak about for sure. Yeah. So my week, let me think, it's been very much my step daughter, she has been off school from Monday to Wednesday, she is getting, she was getting a sleep study done. Okay. So basically 22, 22 different points had different wires, all kind of connected with a, like a kind of braid over the top of her hair. Okay. And we had a camera that honestly, it looked like it was contained in something from men and black. It was like a, that's big storage box, but it was basically to monitor her her sleeping. And that's what I got to bring home with you. Yes. Yes. So we had to, we had to set it up when she was going to sleep. We had to put it away and then take it with us back up to the hospital. Each day. Okay. So basically, we were doing that just at the moment, my step daughter, she has, well, we don't know fully, but she, we think that she has night terrors. Okay. A lot of the time she, you know, she really struggles, she can wake up and, you know, be absolutely inconsolable about something or, you know, and it will be something so small that you don't think in your head is worth crying over. Yeah. But it'll be something not upset, so it's unlikely that we will settle back, but half the time she doesn't remember it because she's not actually awake. And the pinpoint. Yeah. And she doesn't have any recollection of it. I mean, how did she deal with the whole having that on her head the full time? I think it was, I was definitely irritating. She doesn't like anything really touching her hair. But I made a deal with her that we were out shopping in Bredhead and my partner, she was grabbing a few extra clothes or whatever. And I made a deal with her that because she turned around to me and she was like, I feel ridiculous. And I was like, why do you feel ridiculous? And she was like, I'm wearing this thing on my head, people are going to start looking at me, people are going to think I'm silly. Yeah. And she's six years old and I'm like, the anxiety she has at this age is unbelievable, but I remember I turned around to and I was like, right, I'll tell you what, I'll make you a deal. I was like, you can find something in the shop that's in my size, which, you know, I'm a big guy, so I'm like, it's very, very few. But I'm like, if you find something in my size, no matter what it is, I'll put it on and I'll wear it for the three days while you're wearing a cap. Because I'm very much, you know, you do, you do the tip of your snap. So she found a hello kitty top that said, was it two sweet two cute, you know, so she, I was wearing a wore that for the last three days to a piece her. So that she kind of focused on that rather than focusing on what she had on her head, you know, I think a lot of the time for her, it's giving her something visual to distract her from what's going on is really useful. So we've done that, she's done her sleep study, but so my partner, she has MS. Okay. And they're just, I think they're just trying to make sure that the, the night terrors are not caused, it's like a certain type of epilepsy. Okay. So they're just, they were trying to monitor the brain signals to make sure all these types of things sort of were happening. So we will wait out probably weeks or months before we actually get the results back, but we've done a sleep test for her by that basically through everything out of the window for the week. Basically, they turned around, they were like, listen, you're going to need to come up at 11 o'clock every day. So she was missing school. So it was a bit of a nightmare because she loved school and she loves her routine. So it was a bit of a spanner and a wax and I was at home. I had to take the boys up with us. So I would be then trying to take them to keep them occupied and then the park up at the hospital was all getied off. So it's closed right now. Which I'm not going to lie through my plan completely at the window because I was like, well, one of them's in a pram and then my oldest he loves to go in the swings and I was like, he will go in the swings forever. Whenever they come out they'll come and meet us, we'll go in the car. But the thing was locked. So starting up and I'm out down. Yeah. So it was a bit stressful, but I'm glad that it got done. Apart from that, keeping the house in order. So we've got three children and we've got two dogs at home. One of them, one dog sheds like crazy. So that's always fun, when they constantly hover. So we've got a seven month, so he's seven months and he's a German Shepherd. I'll ask him mal and me across. And then we've got a four year old coca poo and she is she's tiny. Absolutely tiny. Do they have names? Yes. So we've got the seven month old. He's called Whiskey. And the four year old she's called Bailey. Now we don't drink, but we've named them after drinks. No idea why. Nice. I think it's because of how they look. So Bailey, she's like a cream coat. So my partner likes a Bailey's. So she turned her into, she was like, that's Bailey. And I was like, okay, that sounds good. And then I've seen a scene Whiskey when he was tiny. And he was just this split image. And I was like, oh, well, if we've got Bailey, that's Whiskey. Yeah. That's that makes sense. I was either that or jagged Daniels, but I was like, hmm, that doesn't really fit. I think Bailey and Whiskey was pretty well to be fair. And then I guess the other thing to ask is, so what's happened to the Hello Kitty talk now? Oh, I've still got to. No, no, no, it's coming in the washing. Um, my partner has put Dubs on it. Okay, and she'll probably wear it as an 80. There you go. That's the good thing about, so with my, with my, with the size that I'm at at the moment. I'm in like kind of two XL clothing, but if I am moving down a size, a partner takes the tops and uses them as a 90. There you go. Well, the cycling. Very sustainable and everything there is there on that. Yeah, so she's already claimed on it, however, she will probably have to find me to the death for now. There you go. You know, so we're circumnexion to that top. Of course. So that's what that process in terms of the, I don't know what's called the kind of head mapping. So I asked him to actually look into that done as well, because we've been looking at the potential that he might have. So one of the things with fragile X syndrome is a potential of epilepsy as well. So seizures and so on. So we've noticed sometimes that he's has, it's kind of hard to tell whether it's kind of absence seizures or if it's nothing. So we haven't mentioned it to him. They said we'll need to do the same sort of thing. But I was going to say I'm assuming there's no kind of invisible symptoms of like epilepsy. Sometimes it'll have a, it is as if you just be staring at you kind of shutter a wee bit as if he's like got a chill. But then it's almost hard to tell whether it's just hyperfixated or something. Yeah. So they've said, yeah, do the same thing, bring him in, do that. But if I'm honest, I feel like I actually don't keep it on you said for five minutes. It's the same that action doesn't like anything on him, that sort of stuff. I'll have to get out of try though and see. But yeah, it's something that's on the list. I know something that we've done with our step daughter. We got like kind of tape because she's for the ashes about sometimes at night and our cat was coming off. So we did put tape around, he would probably pull the tape off, but certainly a suggestion. I mean, I'll just try to be fair. I mean, it's one of these things where I don't even think you'll have it on leaving the hospital. But we need to try these things obviously. Because either of that, they might need to admit them for a few days and then even then, there would be dashes being in the hospital plenty of times. I mean, it's just so sensitive to even things being on them. So again, another thing of fragile X-Rum can be problems with hearing and action struggled with even the kind of basic hearing test. A lot of it, I don't know if you're if you're kids, if you're in a tall way, it's essentially the duty hearing test. But there's like different, there's like two big columns with like different titties in them and it will light up and it's supposed to see like, well, they look at the sound and sort of stuff where the action just wasn't. It couldn't do it. So either they didn't hear or they just didn't have the attention for it. But either way, they couldn't do the test or that field. Even looking at putting something in his ear just to measure it, it wouldn't go up to say it. It wouldn't tell us that. And the next step was, we'll bring him in, we'll give him a melatonin and we'll try to do it when he's sleeping. Try that. Fascist sleepers, as soon as they touch him, wake up. So he ended up having to go under general static to get that done. I mean, it's one of these things where he's here and turned out fine, but we managed to get again, another actually that you can have problems with your heart with fragile exandrums. So we've got them to do like an ECG and things he was under. We've got them to check, just have a look at his teeth that kind of fill in with tea because it's one of these things where no one wants their kid to go under a drain of anesthetics that can avoid it. But if he has a chance to do it, we'd rather you check things that he's going to struggle with. So he's going forward and Ashton has been Ashton. Had already had his tonsils and his adenoids taken out when he was younger. He happened to be the one person that's adenoid to growing back again. Wow, I think that was a thing. Well, it's a matter of fact, it's a very small population which turns out to be Ashton. So we had to clip them in again. That's partly shouldn't happen again now, but he's kind of used to the hospital environment, but it's quite difficult. It's quite like a lot of things like that. He was in for four weeks and he had three different surgeries during that time. Anytime he sees a nurse with a blue jacket on him, he cures. And it's soldesteroin. But like you were saying, a general anesthetic, our oldest, he, because of his peka. And we talked about that in the previous episode to be with his peka. He was chewing on a lot of, inevitable things like he was chewing on his gay, floorboards, all of these types of things. So his teeth were worn down, but he couldn't, he can't sit still. So he had to be put under general anesthetic and he got 16 or 17 teeth taken out. But in that time, he also got his nails clipped and stuff like that done because he doesn't get that done. But they had to give him, because of his size, they had to actually give him a bit extra to general anesthetic because they gave him the general anesthetic, my partner turned around and he's not out yet. And they were like, of course, he's out. Of course, he's out. He then proceeded, when he was in the theatre, he proceeded to allocate a role across and they were like, what? Yeah. And we were like, told you. He's an amazing expert. And it's one of those that he sat there and go, I'm actually impressed that more than just the standard general couldn't help this child with it. Yeah. But I was a sin because he had to stay in hospital for three days and like we were saying before, he's a flight risk. So my partner had to move the mattress off of the bed up against the door because he was actually getting out of the room walking along to the nurse's station because the nurse's station had food. Yeah. And they were feeding them toast at four o'clock in the morning. So yeah, that's a difficult thing. And it's even highlighting the fact that he's nails clapped and dentists, I don't think people realise like basic things like that are so difficult. Oh yeah. Yeah. Yeah. They won't physically lighten near them. No way at all. I mean, Ashton goes to a kind of additional needs dentist now that he goes to. Right. So they have them in every other month to see the kind of hygienist so that he can get in and just get comfortable with even being in there. And they'll try to put like a toothbrush in his mouth and things. I mean, Ashton's quite good in terms of letting his brushes teeth, but in terms of him opening his mouth and saying, "I've a dentist have a look as a totally different thing." But for us, it's like a trust almost. Yeah. It's getting him used to, he knows when he goes in here, he knows they can give him the kind of full rule of the place, they can go through the drawers, he can sit in things and luckily for us that there's different YouTube videos that he's watched with dentists so he kind of tries to impersonate that sort of stuff. So I know you were saying before, like, "My straight shell" and stuff like that. Yeah, "My straight shell." I'm sure she does some dentists, I do know all those different things in it and I'm at all mainly all American, but he tries to copy and do exactly the same things. That's good. Yeah. I mean, some of them are good and some of them are just. The fact that there's like a ASN like dentist hygienist out there, that's phenomenal. And for us, we have the practice in down in the mountain and we took my oldest tea. It was very much a case of Lisson, he's probably going to need to go to the dental hospital because he won't sit still, he won't sit in the chair. And it was very much a Lisson Aneeds all of his teeth taken out. I think it was bar, he's had that one, but he's had that one, we're going to grow slightly out. So they were actually going to bypass his baby teeth. So they sorted that during the surgery and stuff like that. But again, like you were saying, it's so much planning for something people would consider so simple. And it's every venture. Do you think all of it, if this happens, I need to have this here and you have that? You need to have everybody, let your back up plans, need back up plans. And I think that's something we were certainly talking about. And previously I was trying to switch off and trying not to be switched on all the time. And I know that's something I'm struggling with at the moment is trying to switch off because even when I'm out and about, I'll still glance at my phone in case my partner's message may have something or I'll be thinking in my head, you know, what's my youngest up to right now, what's all this doing? You know, because for whatever reason when there's only one pain and our children seem to ramp it up, you know, they really seem to make you know that you're the only one in the house. You know, it's one of those. But I know we were talking about what we would discuss on this podcast today. So what would you like to discuss? I think we could maybe talk about routines. Yeah, definitely. I mean, yeah, I'm just trying to think in terms of what I was going to say. I was going to say something in terms of what you had said and I lost it. We can come back to it. I'm touching on routines because without it, I don't think we would function in our house. So I guess, yeah, like what is your body tellers at what is your, what is your week? So I'd say for the day, at the moment, our oldest is out of school. He's been out of school since June. He just wasn't safe in his old establishment. We're trying to get him into any essay and specific establishment. However, that process is still ongoing. So as such, a large section of his routine has been taken away. Yeah. So we've had to try and combat that. We've been lucky enough to been given some funding for him to get annual passes at a local softplay. And there's a local farm down where we stay that has like a big trampoline in like an adventure area. He loves them. He absolutely loves them. He loves the outdoors. He loves to. loves to play, it could play all day if he wanted to. I think I said that if I ever won the lottery, my first thing I would do is find an abandoned warehouse and do it up as like a jungle gym for him. But so for our, when he wakes up in the morning, most of the time we try not to give a mellatonin for the sole reason that has, try to think of the tolerance. His tolerance builds up really quickly and it also has quite a negative impact on his mood. So wake up very agitated. But if we have to, if he's really struggling for sleep or he's been up for multiple days, you know that's certainly something that way we have to try and put in. But he'll wake up in the morning and the first thing he'll ask me for is toast and spoon, which for him means cereal. Okay. He likes cereal and toast. Half the time it's the exact same thing he wants. However, we normally get him to come in at the kitchen, pick exactly what he wants. Which is normally at the moment it's chocolate wita-bix with golden nuggets. So two cereals in one and he also loves toast with Nutella. So is he quite a good eater in terms of variety? Not particularly no. So he has, you know, certain foods that he loves. He loves packets of smoke sausage. He loves chicken dippers. He loves alphabets, any potato product, he's a big fan of. Absolutely not so in barbecue sauce. But he will not try new foods. If you presented to him, if you want to say, right, let's give it a try. He will just say no. Does he pick up any of these extra foods in terms of more, which he's decided himself and taking it off of some, in terms of the things that you've listed there. And obviously you're saying he won't take new foods. Is it more likely that as opposed to you offering them something that he would take up himself a bit ever came to it? Certainly something we try and do is now and again we'll put like an extra new food on his plate. Just to see if he's going to gauge it because sometimes, you know, he does like blood pudding as well. But that we get that now and again. But a lot of the time we'll leave it on the plate and kind of see what he does. Sometimes they will take it and he'll put it kind of in his mouth and feel the texture. Something he's notorious for is McDonald's chips. McDonald's chips, he'll only eat the squishy ones. The crunchy ones you'll leave. So it's all about texture. So if he likes it, he'll kind of play with it in any elite that if not, he'll leave it and he'll just pick it up and put it straight in the bin. He's very clean that way. Yeah, he's very efficient. You know, and it's one of those that we could have gave that to him. But for sure. So for my oldest, it's all a bit food. That's his main routine at the moment. So we get him breakfast within. He likes to spend a wee bit of time on his tab like we kind of soft start him in the morning because he's a wee bit all over the place. Then we get him lunch and then when he's brother and sister out, we normally try and either take him or if he's brother's at home, he only goes to nursery two or three times a week. We take them out to like us off play and then we come home and pick up my daughter from school. So that's very much part of the routine that's pretty much. We go shopping, we go up to the club bank, we go to the bar ahead. It can be the martin. That's the kind of area we're from. But for our oldest, it's all about verbalising what we're going to do next. Because if you a lot of the time you'll repeat what you've said to make sure that's 100% what we're doing. So if we turn around and go right, we're going shopping and then we're going to go jump and his mind that means right shopping. Half the time it means one shop to him. One shop then I'm going to go and jump and I'm going to go and have fun. If we throw anything else into that, that's when my understandings occur. That's when he starts to get a bit frustrated. So that's something that we're working on is we're getting a visual timetable put in where we can put up a picture of all the shops we're going to. And then we're going to take a picture of this off play and that's what he's going to go to. Now in next thing. Yes. Yes. Absolutely. Now that's something that we use ration. A lot of the time when he struggles in terms of if I was to say, okay, you're going to go to school and then you're going to go to soft play. He doesn't understand the next part. Well, it's like not going to school. So he's going to get on or like if we try to add extra things on top of that being like, okay, like we're going to go to a soft before that you need to get dinner. It kind of struggles in terms of because it's going to be a bit tricky. Yeah. Just in terms of timelines. It's almost like if you say one thing. I mean, sometimes you can get it, but a lot of the time it can be occasionally like no, like I don't want to go to that next thing or if I'll be like, going to go to bed and then shower and be like, oh no, no, no, like that sort of thing. So it's it's trying to build that up and it's the same as you that whole now in next and the visuals are are great. We try to do some visuals, which is bought my new kind of calendar. We're trying to get that all set up for them. But I am a lot of the time he just kind of likes it kind of verbally, but at the end of the time it does have to be just kind of what's coming up and it's like now in next as opposed to anything above that. It can be difficult. I think we had a kind of cartoony visual timetable, but when we spoke to the, we spoke to one of these social workers and they turn the amendment, perhaps he has social, he doesn't have a social imagination. So very much, we can show him a picture and he's getting no clue. That's what that means. So we've started to like pictures of real things and we're hoping that that association helps. I mean that makes sense. I mean a lot of the pictures like we have it the other way sometimes where like, I remember we would take action to it could be like a farm park or something. I'd be like, oh there's a pig, there's a horse, there's a goat and you're like, why's it not getting in? And then obviously like in terms of that oaken at autistic brain, a lot of tenure like everything that you look at would be like a pig is pink. I think it's like brown and black and he's not a pig. Like, yeah, it's that sort of thing. A lot of these pictures, well they're great. So the association. Yeah, because we did that for a while in terms of different foods. So I'd take a picture of like five or six different dinners so that you could try and choose because I think we said before about how a lot of the frustration that seems from our kids comes from that whole communication barrier where they can't get across what they want. So it's trying to make it as easy as possible for them to show what it is that they're wanting. We did the same for TV whether it was different things. It's Rachel, pop it through all these different options. It's trying to make it easier for them. So. And I think that's the thing you've got the nail on the head and the sense that we have to be the ones to adapt that because there's no point in us turning around and going, no, that's not what this means because all that's going to do is confuse them, irritate them and then we're back to square one whereas we've talked a lot about how we have to adapt their approaches. And I think since, certainly since I've known my oldest, I met him when he was four, he's now nine, so five years so much has changed in his routine. Yeah. You know, he used to go to school five days a week. He was arguing those times where he was busy other times where he's not been that busy and any kind of spontaneous, I believe that's the word, that really throws him, you know, because he doesn't really know what to do with himself. I think it's that unknown that he's don't really get it. I think he expects, you know, to have a plan for every minute of the day. And it's not always possible but you have to kind of try and fit things in as much as you can. It can be that anxiety as well. So if you think about it in terms of like even like as an adult, if you get told, like you're going to go to this new place, you have no idea what you're going, what it's going to be like, but we're going there. You don't have to be like, oh yeah, because about one hundred percent, you can't any brand new thing in my routine. I'm like, I don't like it. Yeah. No, you're looking at you. You haven't gave me notice. You go to your restaurant. I'll find myself looking at the menu beforehand so I can choose it ever. Yes. So you think about the kids as well. Look at it as just definitely, as if it's kind of like no sign of the fact that they build in there. You say that word, they're okay. I know that that has this thing. We find an ember when Ashton was younger, we would take him to be a friend's house or something and the difference would be massively. If you took him to a friend that had kids as opposed to dead, then it wasn't the case of him playing with the kids, but if you went into someone's house and recognised a toy, it totally settled in terms of like, okay, I understand this toy. It's here. Whereas if you took him to us, it's got no toys and he's getting nothing. It's just nothing. He's like, why am I here? Don't want to be here sort of things. And to start learning points that you pick up over time, which yeah, it's like that's saying before you pretty much need like a degree and your own kid to. Oh yeah. And I think actually something that I was thinking about when we were talking about this. He obviously mentioned that when you have a diagnosis, it is almost like, you know, you have it. You almost have to have a degree. And it is similar in a degree where I mean, you know, you have that diagnosis, but at the end of the day, it's a sheet of paper. Yeah. You know, and still your child, nothing changes in that. And that's certainly something that I feel that when people get that diagnosis, like you said, you go through the stages where you're like, what does this mean? Yeah. You know, and I know certainly that is certainly from my perspective, you're over. Thank you. but you sit there and go and I've done it when I first learned about my steps and has diagnosed this I instantly went to what if I need to look after him up until I'm an old guy, what if you know he's not going to live anywhere else, what if he can't go out and do you know what if he doesn't go to you know graduate somewhere, what if he doesn't marry, what if all of these types of things and you can just spiral off on that you know and I think you sit there and you have to turn around and go right I need to take things and step at a time. You need to reset the expectations. Yes and it's that way of like you can just do it once it's different because they'll develop, they'll just progress sometimes as it is but you need to constantly just keep changing and I know I keep going about podcasts and learning all these research but I find that the thing you learn the most from is from them, like the other ones that show you the kind of way and essentially it's adapting to what they do and making things easier and you're going to get that you go through and get that balance of okay I understand what you're wanting to understand and it's just rewiring your own brain to be like oh it's just what you said as well about oh no if you're not getting desired until you've finished your dinner that sort of thing it's rewiring like okay it's a totally different little book here, like the way I've had to reeducate myself is unreal like I'm something I remember my partner, my partner done and it still cracks me up to this day thinking about it as you know we were we were we were eating and I always go if I'm out and about if we're going to a restaurant it's a starter then I mean then a dessert it's like the natural form and I remember she ordered a dessert first and then I mean course and then a starter and I just looked at her like she was an alien yeah because I was like what in the world are we doing you know I was like starter mean dessert that's the natural flow and she was like says who and I was like you know she's absolutely smart, it's always a question you're like oh this is the way it's supposed to be but why? yeah and I feel like my whole upbringing I was like hardwired to think that you know and I say this all the time is especially with being a lot more you know educated through podcasts through you know YouTube through lots of different things you know we were talking about it earlier if we heard a scream in Cheyouta in a shop you know before all of this I'd have thought it's just a kid not getting his way whereas now I'm a lot more right what if that Cheyout what if that Cheyout's not comfortable in this environment? yeah a lot more sympathetic isn't it you just knew the automatically think like re-watch how you struggling you think about the parents you don't automatically think as you said like what does this kid do like they need to behave where are the parents you realize like this could be a child really struggling like that could be our child it could be that and it's just totally switches your mindset and almost kind of opens your eyes this whole other world that's out there yeah it's huge and how big a change it is and as I say as you just shift that you're not the most important person it's it's your kids sort of thing everything has to be focused on them like in terms of if we were ever going to anyway that'd be like which restaurant we're going to go to okay we're going to go here they have to adapt to it now it's like no no which which restaurants could he cope in yes that's where we're going absolutely like um you know half the time it'll be you know which restaurant is okay with him having a takeaway yep whilst we eat in there you know I know what is it we went to was it tgf3 this is a place that me and my partner absolutely love but the chips and there are not like the chips and McDonald's so our oldest wouldn't go wouldn't touch them so we would have to one of us went out got him and I'll get and I'll get me off from McDonald's yeah and brought it in was like this and we are sitting down we are eating however he just won't he won't do it he won't touch them and thankfully the the manager at the time was like that's absolutely fine yeah and that makes it so I love to see that the manager's discretion they could easily turn around and we know yeah but you know and it's one of those that we talk about trying to introduce things into these into our life to you know include our children more and more and I think that certainly I sat there and I was like that's a good start you know obviously talking about I talked about our oldest routine what about our best and strutting yeah so I mean I shouldn't very much so when we get him kind of downstairs and the more it's very much so actions very motivated by food he always he's wanting to eat a lot and it's something we can find difficult on the house and it's that way where he's that sensory aspect as well so he can get to the point where it'll eat so much but then he'll just start spitting out but he just as if he just wants to chew on it and then spit it out but he doesn't have the same way as your oldest he doesn't have peak he's not like a oral sense that the more like the oral sense to have that way that he just wants to chew and think he prefer to his apples yeah plums nectarines he's obviously he's crisp he's not he's not so much massively into chocolate and sweets but his eating is it's a difficult one to kind of get our head around it first so in terms of the house he is very sensitive to different smells and textures and things so he used to have toast every morning totally fine whereas if we bring toast out now he'll just be sick so as he sees it we sick so it's things like that we'll have certain dinners we'll be pulling them out if he sees it he'd be sick right but it's that way where he's not unwellering he's just so very sensitive to different smells and on that anembre and the wife had a lush box it fill a bath bombs yeah ashen cussin opens the box soon as he sees it just spews every here how strong those smells aren't the complex bath bomb but I mean now in terms of ashen quite like like a quest so long I think a cereal in the morning dry cereal can't be with milk because ashen eats ashen eats everything with his hands we still haven't managed to fix them the whole knife it's like a fixation yeah so even if I give him something on a fork he wants to use his other hand to take off the fork I need to it with it so putting something in milk just wouldn't make sense for him because he's like he can be on the shape yeah exactly so that's his kind of standard breakfast in terms of school it's what he won't really eat meals at many other places other than the house right school he just has to have a snack bag with him okay if he's usual snacks he'll eat that and as soon as he comes home we need to pretty much have he'd dinner on the table we eat none on a specific red plate okay we've tried to buy exactly the same red plate but if we use that he looks at it and just kind of pushes it away because he just knows because this is phenomenal I think specific scratches on the other plate he knows no no this is the plate so if we used to have a big pile of lots of different plates and now he has there's two red plates it'll have and then like three specific balls not matching the rim but those are the ones it'll use you try to give another one he wouldn't touch it but yeah that's the thing like in terms of the house he'll eat curry pasta lots of different things but if I took him to another house because it was my sister's house or something and gave him exactly the same thing wouldn't touch it push it away right example that is like like out with these out with these like realm of comfort comes the ability it's just I don't really understand why so he's very environmentally affected I get certain things are doing the house they want to elsewhere so he's quite he's a lot more quiet out and about he's a lot more chatty in the house and but things like if we get hammered donalds you eat it in the donalds or in the car if we then move it into the house it will not touch it right okay we get if the same thing we take the someone else's house then he won't touch it only in the car only in the McDonald's same with KFC very situational thing yeah so it's really strange I think that absolutely fascinating and again you just wonder kind of what's going on ahead that's the thing it's that way of like elash and a good ear it does it also over it eats then he won't eat and he won't eat meals elsewhere he has getting better in terms of restaurants because he's recently figured out that he likes chips which is a massive win because it's something you can get anywhere oh yeah so that's sort of stuff good but actually love school he gets picked up by his bus in the morning goes in and come home he'll have his dinner and then usually we'll need to take him out somewhere pretty much most nights of the week whether that's for a dribbler a soft player or trampling park or if he's got a club on he it's quite difficult to keep him in the house because he has so much energy he just wants to use up him so it's always go to a trampling park or go to a soft player something to keep him occupied and as I start at a time and it takes a while to get action to go to bed because he's so he's mind is so busy with repeating different things that home I'm making sometimes get stuck in a loop in terms of just the same thing over and over and over and that's where we get the mail to into help just to get that in. Is it fast really so slow it looks he's on so it's a liquid so it's just the fast release because I believe that the only way you can get this low release if they'll take the tablet form because there's like a coating around the tablet again with a lot of cloud vice but I think the liquid from what I've heard is fact acting because it just gets straight away whereas if they take the tablet it's the thickness of the coating that basically slowly releases through the night whereas action will not take tablets. I was going to say like we we have to for our oldest we have to get a yogurt pot we put I believe it's two I think it's too fast release or too slow release and one capsule of the other and then we mix it around and what we have to do is we almost need like speed feed Yeah, that's good so that he doesn't have time to stand up so Yeah, 'cause he just swallows it, you know, and something with our oldest is, he's just never full. You know, we got him tested for, I believe it's-- - Sutter, will he? - Prater willy, yeah, we got him tested for that. I'm shocked that came back negative, but-- - So, John Kiz is like a, almost like a sensory thing as well, I think, I think, so-- - I think so. - So, just wanting to just-- - He just, I don't think he has that, like he will eat an ale, an ale eat, till he throws up, but he doesn't have that sensation of, I'm full. - Yeah. - You know, he will eat, like he eats, he's quite flexible with some of the things he eats, but he's very systematic with how he is. He can eat virtually anywhere, and he will eat anything near enough. So, I know something, when he was at his school, he would have like four bowls of sweet corn. So, as you can imagine, yeah, as you can imagine, no, when it came time for him, it was basically a stack of corn coming out. - You're just as high as that. - Yeah, so, and it was always, you know, sitting there going, how much corn does this work? - That's kind of you, you know? - Yeah. - He's keeping them in business. - Right. - But it's, oh, it's honestly, so what was it? Our oldest, he was actually, he was eating these, so we would make him a pat lunch. He would have a pat lunch, a school lunch, leftovers from the school lunch. - Yep. - And then we actually found out that he was stealing some of these classmates' sweets as well. And I was like, oh my God. - And this is him having breakfast in the morning, dinner, and then snacks at night. You know, I knew he was consuming more calories than me, and my partner, combined. - But it's that way, you're saying he's so active. - He's so active the way he burns it, he burns it completely off. And it's insane, you know what I said? Because I look at him and he's just an absolute specimen. You know, he's, I think, he's weighing in at about 60 kilograms right now. - Okay. - So if you think about that, you know, he's a big boy. You know, he's up, he's about five foot tall on me. You know, and he'll climb on my shoulders and lift them up and, you know, God knows what that's doing from my back. - Passion's the same as that. - Just think, "Oh, he's a baby, so I think he's going to be all over you." - Yeah, yeah, yeah. - And I'm like, honestly, I think this weight loss turning that I'm on is solely so that I can keep playing with him. - With him, yeah. - Because he's such a big, such a big boy, but I'm like, he's going to be able to tell me what the weather is and he's going to be massive. But like you were saying, that's really like, and I didn't know a lot of things about as soon as you were saying there about your routine. So I find that fascinating, you know what I think. I think like you'd probably agree, like without a routine. That's when, you know, you were saying before the fight of flight response to kicks in. You know, I know for, sorry, our oldest, he really, you know, he will just unrelent, like unrelent, cry. You know, when he's not getting, when things are confused, normally he's getting really, really overwhelmed. And when that happens, any routine, it's just an absolute nightmare. - You know, it gets predictable as possible. Just because it's only what's going on, it is that whole anxiety side of things. It's funny, kind of jumping back to what I think you said about how, or the dessert first, and you're kind of predefined rules in your head, like you can't do that, you can't do that. And that's like, in the morning, the national come downstairs and you'd be like, you want to put a crest on it. You can't have crest for breakfast, and then eventually after a while, you're like, well, why not? Like he needs some to eat sort of things. I have the time, it's, you'll, I'll be making these breakfasts, they need some to tie them over until I finish making these breakfasts, sort of thing. And it's so hard to kind of retrain your brain to be like, oh no, they shouldn't have this until this time, and this shouldn't happen to them. And this is what our breakfast meals look like. This is what a dinner should look like, and it's that way of like, it doesn't have to make sense to everyone, just has to make sense to them in their situation. - I think societal expectations go completely out of the window with a child with additional support needs. Not a bad way, but you can physically put in, things that we were taught when we were younger into our child's lives, because it just doesn't make sense to them. - Yeah. - You know, like I was very much taught that, if I didn't finish my dinner, I wouldn't get a snack. You know, and I believed that for so long, you know, until I was obviously an adult. But then, you know, when my partner spoke about it, when, well, that's not training, you know, our children about when they're full. - Very true. - And I was like, well, yeah, because then, in my head, I'm like, you're forcing them to eat well, beyond the means so that they can get an extra snack. I'm like, well, that's not helping anybody. - You see, it's just, it's crazy. And so you need to analyse everything. Like, everything you know, everything it's going to be. And you need to just totally think about it and go in with a complete clear mind. - Yeah, you need to re-evaluate everything that you do. And sometimes when we're talking about this, it sounds very, you know, it doesn't sound positive. But one thing I will say is, re-evaluate everything. It really does give you, like, almost a glimpse through their eyes. And it gives you a bit of a, you know, a second wind, almost, because you sit there and go, right, well, you know, everything that I knew was applicable, you know, to my progression. Now I'm learning completely from scratch alongside him or her. - You can improve yours, I know. - You know, I think it makes me a better person because when I see children who have additional supports and who are struggling, I feel confident enough to be like, listen, it's okay. Everything's all right. Or, you know, it gives me that confidence, you know, when sometimes I can struggle for confidence, you know, you have to do that. You know, I'm doing the best I can. You know, I'm putting all these things in place. It might not always work 100% at the time, but, you know, we're doing the best we can. - Yeah, definitely. And that's all you can do. And it's that way, I think, as well, around other parents, it's that whole thing of, like, you don't judge them because you know that, I know for myself, from my kind of anxiety, part of you, I'm always very anxious in terms of, like, what are these other parents thinking? And that's when I think for me, like, being able to go to different, like, ASN sessions where it is just your community, you can just relax a lot more knowing that every other parent's, whether ASN runs up to them, he's not gonna get, he's not gonna get, look down on, he's not gonna get, they're gonna treat them the same sort of way. And it's just that way that you can switch off a bit, you can relax knowing that he's with people that get some sort of thing. Which is massive when you find out, as well, because at first when you're trying to navigate it, kind of post-diagnosis, again, you're trying to get them to fit into a lot of the time I've world it isn't fitted for them. So when you find this community, you find your place, you can go and, again, go into terms of, when you stick to their routines and make things as easy as possible for them, I mean, for me, Ashton has absolutely joined to just be involved with sort of thing, like, he's always laughing sort of thing and he's just, I mean, don't get me wrong, meltdowns are difficult, sort of thing, there is always a kind of difficult side and downside of that. But in terms of just getting him in a position where he is happy and wanting to play with these toys and wanting to involve me, whether it is something that's very repetitive, but just to see how I'm smile and laugh, it just makes it all worth it, definitely, I'd say for myself from that experience and that point of view. Yeah, I think, I mean, it's very much when we talk about additional support needs it very much, as it does what it says in the tin. You know, it's very much, it's your child, you know, they just require a little additional support. Yeah. You know, and it can be, a lot of additional support can be a lot of additional support, it doesn't matter. It gets them what they need in order to, you know, exist and do the things that they like to do, you know, and obviously every parent has different goals with how your child is going to progress. I feel especially post-diagnosis. I think you, you kind of look at them in a whole new light of whatever you're going to do, you're going to do. Yeah, you know, and I think that expectation of, you know, all you're going to do this or you're going to work here, or you're going to do that, I think you kind of take a step back from that and go, "Well, he'll tell me what he's wanting to do." Yeah. Or he'll tell me what he's wanting to do. Yeah, you go at their pace and you work with them in terms of, like, that's what I find with Ashton, you try to get involved in their special interests, like, no matter what it is, and try and use that to help them in being involved, and not try and push them into things that they aren't comfortable with. And, you know, it's just thinking, I'm massively proud of her Ashton's being in how massive he's kind of long. And it's that way of, that you just wish that you could talk to yourself and all you're saying that you've, you've, you've still, on the kind of diagnostic journey with, with your youngest, but it's that way of you just wish you could kind of speak to yourself when Ashton first got diagnosed as to say that, yeah, it's a difficult ride, but it's also a very rewarding one, as well at the same time, and we're going to get through it. I think it certainly makes you the, the, the man you are. And I know, I know everybody in the ASN dad chat is, you know, providing for their kids and doing the best job that they can, you know, and I think everybody in that, you know, everybody should be proud of that, you know, and I thank you. when you look at, you know what I think, like you were saying about the diagnosis, it can be really hard to get your head out of that, big cup at the end of the day, you got to look at it like you were saying, and you know, this is your child, you know, and it doesn't change that they are your child, and that you're going to move heaven and earth to get them exactly what they deserve. You know, and I think talking about, you know, having our routine, having places for them to go, you know, having something, having a structure, you know, I know we were talking earlier about the structure of this podcast, you know, and lack of structure. And I think there's certain areas in life where your structure, you're like, okay, well, if it happens, it happens. When it comes to our kids, you know, you try and stick with it as much as you can, and you have to, you have to have a whole new level of patience because it won't always work out, but I think there's nothing more, in my opinion, there's nothing more rewarding because yeah, there are challenging moments, yeah, there's times where your child is screaming at you over something so small that you almost want to be like, come on, is it really that serious? But seeing they have these moments where they, you know, something, they do something positive, it's unregulable, you know, I contributed to that. Yeah, exactly. You know, and that's something, you know, you need to take small victories, and you know, it can be something so simple, you know, I know, was it my oldest, he, was he yesterday, he picked up his, he's played and put it in the sink without us asking. And I was like, it's my sick, honestly, I was like, I'd celebrate that more than, you know, a graduation at this point, you know, because small victories are, yes, it's just it keeps you going, you know, and like you've a senior, we're preparing them for a world not prepared at the moment, you know, and that's what we're making good strides in that. But by doing this podcast, by having the ASN dad chat, by working with ASN communities or other communities, I know you were talking about the community that you're a part of. Yeah, the, the fragile exes. Yeah, the fragile ex. By tuning in with all of these communities, you're building a better future. Yeah, you know, you're taking that step, you know, and it can be, I like to think about it as like a domino, you're knocking over that first domino, and I would advise any dads out there, um, who are listening to this podcast, like knock over that first domino, you know, getting contact, whether it's just a chat, you know, you can, you can chat over what's that, you can come for a bit later, and as you can, as you can hear, I can talk for Scotland, so I'll gladly spend a good portion of my time speaking to you. Um, but I get, as I stop talking, half the time, but I remember all of these guys were all our, our specialist subject or ASN kids, so yeah, we're more than happy to chat. Yeah, but the help is here, you know, and you don't have to, I always hear all the time is we don't have to go, you don't have to go through it alone. Yeah, you know, there's lots of things you won't understand, there's lots of things that will keep you up at night, but we're in the same boat, we've, we've either been there or we will be there, you know, definitely, you think that's the thing you think you're kind of, in that boat, and well, we can't obviously fix everything, make it, make it, make that better, we can, we can give you an extra over, make, I think, what makes things a bit easier to put in. That's an interesting thing to put in. Yeah, I like that, um, yeah, for sure, because, you know, there's going to be a lot of things, you have to, you know, face when it comes to children with additional support needs, you know, you're going to have a lot of health professionals involved with thought about medical opinions. Yeah, we don't, we don't contribute medical opinions, just our own, but there's going to, you know, those times where, you know, you're going to have, you know, a really productive meeting for your child, there's going to be times where you come out with more questions and answers. Yeah, you know, that's going to be the same with education, you know, it's going to be the same with anywhere you go, you know, you're going to think so differently compared to other parents, you know, you go to a soft play. The first thing I'm thinking about is where's the exits? How can, how can, how can it, you know, my oldest, how can he, how can he figure it out? How is he going to, as he going to try and snail snacks? I know we went to a soft play where the snacks were all open. And my oldest, my oldest run up a tab, yeah, I basically ended up just telling the guy behind, I was just like, tell me how much it is at the end of the day because trying to run after him and then stop him, it was just a nightmare and it was very like, it was like an enclosed place, I'm knocking the mic out in the way there. It was like a very enclosed space, yeah, so, but it was like a big jungle gym, so he would run in and he would hop climb up and I'm a big guy, I'm not making up, not a chance. So, you know, it's one of those that there's lots of things you'll face and sometimes you need a few point on sort, how are you about advice? Yeah, and there's plenty of advice and it's that way again, there's no silly questions, everyone, everyone's going through some sort of similar complex journey that you can ask a question that if it can't be answered, they can certainly help you find an answer for it. Again, just to echo what Sam says, don't think you have to go through all of this alone. We're here, we're happy to help. Definitely like, use us anyway, you can, terms of if you want to try and just come for a meet up, you want to have for a chat, you just want some ideas because as Sam said, there is going to be a lot of different stages you'll go through in terms of speaking to different professionals, trying to find places that that you're comfortable taking, your kids, trying to get a good understanding of what they're going through and maybe it could be speaking to some of the members of the group that have maybe got children who are adults now and trying to look a bit more to the future because there's obviously so many different stages of life. So, there's definitely a, again, a plethora of knowledge there that we're happy to share and it's that way as well, we're always looking for more members in the chat and there's not any reason why you can't come and contribute and you're the one that's coming to help us in the next stage of things and, therefore as I said, take that next step or as Sam put it, knock down that first domino. Yeah, not design poetic. No, I think from what you were saying, absolutely spot on. Taking that step, it can be one of the biggest steps in life, you know, but it's the same with anything, you just need to take that first step. So, yeah, I think we've covered a good amount. Yeah, I think we've got a good night there. Again, we're looking for feedback in terms of anything that anyone would want us to talk about, otherwise we'll just start obviously going through different topics where we can, again, things like travel, different difficulties or different situations that we'll be in. But yeah, feel free to suggest any as well on social media. I know we've got, I'm sure we've got Facebook, Instagram, we'll make sure that's all plugged. Yeah, we'll do plenty of that. Feel free to message away. Definitely. So again, glad you're here. You're not alone and we will see you on the next one. Thanks. Thank you. Thanks for listening. If you want to get involved or get in touch with us, you can find us on Facebook or Instagram under ASN DadChat. [Music]