Back to Basics with PDA

This week I am going back to basics with PDA and handling life.

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Transcript

SPEAKER_00 0:02

Welcome back. I am your host, Jesse Towns, and this is the Keeping Shit Real podcast, a podcast for anybody who's got kids and specifically neurodivergent kids. Because let's be honest, this shit is fucking hard. How are everybody? How is everybody doing? I mean, what a pleasant surprise of a week that we have had. I feel like in the last week, if you live in the UK, we've gone from fucking 21 degrees to minus seven to snow, hail, and sun. So I'm here for this, but I'm also really, really here for the fact that it is fucking light at half past six. I mean, that I just love it. I love it, love it, love it. It's completely changed, you know, like my whole sort of overlook. I just feel like refreshed, regenerated, like the summer is on its fucking way, people. This is what I live for, the summer. Uh, for those of you that don't know me, I have three children, three sons. They are a real mix of age. My eldest son, Leon, is 17 on Monday. He is neurotypical, he's an absolute babe, but he's gonna start driving lessons next week, which is fucking freaking me out a bit. But yeah, and then I have eight-year-old neurodivergent twins. My both of them are ADHD and only the youngest one, Maxie, has a PDA profile with high functioning autism. So, some things that I really wanted to talk about this week, actually. Something that has been kind of bothering me. Well, not bothering me, but something that's starting to get on my tits a bit, actually. I think that's probably more of a better saying, is how we are perceiving PDA in terms of, sorry, I'm just walking around my house to my kitchen because your fucking washing machine's finished, and I can't be dealing with it beeping at me for the next half an hour. Something that I am really conscious of and mindful of is, you know, when I started my journey with PDA and Find You Now, I was always under the illusion it was very high levels of anxiety. But as the weeks, months, years are starting to roll in, we need to switch from that mindset of high levels of anxiety to switching it through to a PDA lens of focusing on loss of autonomy. Now, you may be thinking, Oh, I just listened to this because I like you, Jesse. I've got no idea what PDA means. So PDA, its correct term is pathological demand avoidance. However, it's we are slowly easing on the side of caution of calling it pathological, moving away from calling it pathological demand avoidance to persistent drive for autonomy because it is a loss of autonomy that we see in children that have and young adults that display PDA. If you don't know what PDA is and you're not don't really give a shit, I would completely suggest about switching off now because this is going to all be about PDA. And what I really want to do is I really, really want to go back to I want to go back to basics with PDA. I feel like we are I've slightly forgotten a few bits about PDA, and I just think it's really, really important that we focus on the going back to basics really with PDA, so that we really kind of really fully understand our kids and how difficult it can be for them. And sometimes people say, Well, I've tried this and I've tried that, and I've you know, I've I've tried declarative language and this isn't working, and that's not working, and they're like, you know, they're focusing on anxiety all the time, and I think let's move away from that, let's move away from the anxiety, let's m let's really, really focus on what we do know and what we can do to help our children that have got PDA. So, what is PDA? And why does your child have a meltdown every time you ask them to put their shoes on, or even if they just want to go out? PDA is a profile, I would say majority is is diagnosed on the autistic spectrum. Um, it's not a separate diagnosis really anywhere, but um it can be a PDA profile, it can be profiled, PDA sorry, can be profiled on the autism spectrum, but also the ADHD spectrum. The core, like one of the core features of PDA is that it is an anxiety-driven need to avoid demands and expectations. Now, this is where it gets difficult because it's like how do we differentiate from ordinary demands to demand avoidance or defiance or to ODD? The thing is, it's not it's neurological, it's a neurological disability. So it's not the fact that they're just being difficult as fuck and they just don't want to do something, it's not will, it's not will-ful naughtiness, it's that their amygdala, the part in their brain that registers threat, cannot deal, cannot deal with how they scan things. So it's basically in a how it shows up for like a little kid, for a child, like for me, for my son Maxie, when he when it was really the shit was really hitting the fan. It seems to they seem to what you would think of have meltdowns over the most seemingly like quite small requests. They really quite enjoy role play, like fantasy play, anything like that, because it kind of deflects on the situation of what's being asked and what's being put on them. They are pretty good in social circles, however, they sit back a lot of the time because they have that loss of autonomy. In adult PDAers, I think you know, they may struggle with late diagnosis stories. Do you know what I mean? Because it's it's something that is quite fairly new. Well, it's not fairly new, but I think PDAs become a hot topic, bitches. But the demand is a lot broader than people think, and it includes sort of internal demands like the physiological ones, like hunger, needing the toilet, needing to eat, needing to drink, and then obviously, with that thrown in on top of being autistic or having ADHD, those impulse areas, but also having oversensory issues, also, that can often be layered on top of it, so it can be really, really difficult for a PDA to be able to recognize what is not a demand versus what is a demand. And this is, I think this is the reason like there's a lot of reasons why. Um, and I'm talking about getting back to basics here. So, why traditional approaches? People say to me all the time, um, for those of you that don't know, I've got a um a community of PDA parents. Uh, there's about 100 at the moment, and we all just you know, we've all got kids, so we're all parents and carers, we've all got kids in our family, and there's a few teachers also that have um that have you know look and care after children with PDA. Now, there are some things that really do not work with PDAers, and that that you know, I think we've been had instilled to us for so many years, like the traditional sort of approach of of parenting, of teaching, but they don't work. Things that don't work, okay. Reward and consequence systems, you know, reward charts, waste of space, firmer boundaries, waste of space that you can have firm boundaries, but you need to be flexible if it's a safety issue, nah, it that's non-flexible. But firm boundaries can actually escalate a situation way quicker. And what we don't want, they don't they will never de-escalate a situation having really firm boundaries when you've got a PDA. Um, and I think there's a real importance of understanding that the loss of autonomy drives the avoidance underneath what is going on. People say it's anxiety, but the more I learn about this, the more I learn about this, the more I just like I'm starting to disagree about the high levels of anxiety. When I first started my Instagram account and I was first learning about PDA, I was just told it's high levels of anxiety, high levels of anxiety. But there is some there a lot of the time my child with PDA, he does not appear to be anxious, and he just won't do something. This is simple as that, and and it's it's one of those that the if you can switch out of that anxiety because sometimes anxiety-based methods are never going to help you in the first place, and that's just a fact, okay. So things that I just you know, things that really, really don't work. All right, we've got boundaries, firm boundaries, understanding that PDA is an the avoidance, the underneath avoidance to a demand or a threat that they see. A lot, it can be really misdiagnosed as oppositional defiance before I can't say that today. Oppositional defiance disorder, ADHD, it could be just an anxiety disorder, or it could even be like your your kids got attachment issues. But what we really need to try and do is to reframe demands as choices. So it's you know, say if you're trying to get out and go to the shop, I could really we really need to get some milk. Okay, not get your shoes and we're going to the shop. Reframing a demand as a choice is really, really good and is really really beneficial and can really really help you because it stops the threat and it allows you. I think when we are when we're trying so hard to speak to PDA kids, there's always that element, I think it's the human element, that we speak very quickly. And if they haven't answered us, children with PDA do need a couple of you know, probably like 10 seconds for to register what's going on without you then asking another question because that's another demand to them, so they're gonna find it very, very difficult to cope with it. Using indirect language, and when I say indirect, I mean like kind of like third party praise. Third party praise. Can I just tell you? Third party praise has fucking changed our life. It is so so good, it's so beneficial, it's so powerful that we actually get quite a lot done now. Can you fucking believe it? But third party praise, they can kids with PDA can really, really struggle with being told that they're doing something really, really well. That again, they just see it as a threat, so they're gonna be like, Oh my god, I can't cope with this. Um but what we really, really want to do is you know, praise them third party to say if I say if my son had done something really, really well, instead of saying, Oh wow, Maxie, you did that really, really well. I would say to his brother or his dad, Wow, did you see that amazing painting that Maxi did? I'm so proud of him, with an earshot so that he can hear it and he can take from it what he wants. Kids with PDA being put under pressure with time is always gonna fucking go horribly wrong. I hate to say this to you, like if you just feel that if you rush around your entire life, you are gonna end up like with even more chaos with a PDA. Trust me on this. I know my shit when it comes to rushing a kid with PDA, and it is one of those, unfortunately, that you are gonna have to somehow manage. But if you have to set your alarm cop half an hour early every morning, then do it because actually, rushing a kid with PDA is going to be ten times worse than just getting up earlier. Um and I'm not even joking you. It it the time time pressure is really it it is really really hard for children with PDA to cope with. So build in more transition times, avoid really rushed routines, give yourself an extra half an hour. I know it might be a pain in the ass, but it will stop more chaos. Picking your battles wisely. I mean, I don't know how many times I've said this to people, but you need to pick your battles wisely when you've got a kid with PDA. Honestly, if they won't get dressed and you're just dragging them to the shop to get, I don't know, milk and they're in their pajamas, who gives a shit? Keep them in their pajamas. It is about keeping them regulated. Let go of this old type of parenting that I mean, and I'm gonna say this I was guilty as fuck at this when I obviously, as you know, I've got a 17-year-old neurotypical son, and I was so guilty at this, so guilty at comparing my neurotypical child to my neurodivergent twins, and it doesn't work. But now I look back on some of the decisions that I made, my parenting decisions that I made when I just had my oldest son, and I think fucking hell, I should have adopted this approach way before then. But let's not forget, you don't know what you don't know, so there's no point crying over spilt milk. But yeah, really, really pick your battles wisely. Decide on what really, really matters that you do that day. If it's not really if it doesn't really matter, then don't do it. Also, what else is really really beneficial and like really terms of like really helpful is that problem solving together. Involve your PDA in creating any type of rules, you know, regulations, that type of thing. Do it together. But most importantly, keeping yourself regulated is the calm that your child will need. And actually, if you are calm, cool, calm, and collective, that will be contagious. I think if you're a teacher listening to this, some tips that I have given schools in the past is make making sure there's flexible seating arrangements, there's that opt-in participation. My youngest, my PDA does not, um he goes to specialist school, but he doesn't get homework home, obviously. But his ADHD twin brother still goes to mainstream school, he absolutely loves it. But he finds it so hard concentrating in the classroom environment at mainstream school that when he was doing his homework, he was finding it really, really difficult at home, and we were really, really struggling. And in the end, we were like, nah, fuck this, he's not doing it, he is not doing his homework. So we have actually elected to opt out of doing homework, do that, have quiet exit options, soft starts, coming earlier, coming later, don't go through the main playground door. Always allow kids, if they're in the classroom environment, in how they demonstrate their understanding. All right, so they don't have to stand up at the front of the class. They can tell you, they can write, they can show you whenever. And be as inclusive as you can. Some of the other things that I've found really, really helpful, like within my journey of being a PDA parent, is just a key message, and I will say this over and over again: connection over compliance, pick your battles wisely, regulate yourself. Don't forget they're having a hard time, not giving you a hard time. And I tell you what, when I started that mantra of they're not giving me a hard time, they're having a hard time, it kind of fucking switched everything up for me because you know, as much as we always want our kids to listen and behave to us, when you've got a child who's got PDA, that loss of autonomy is it's not their choice, they're not being difficult on purpose. But when I switch my mindset to that, I it's really, really helped us and it's really, really supported us. Just a few other things, like in terms of resources that I really, really would highly recommend is The Explosive Child by Dr. Ross Green. That is amazing. It's such a such a good book, it's so well informed. It's just I wish every every teacher was to read that book because I just think it would make it could really really change children's lives. Um, and it is truly a fantastic book. When we are looking at hints and tips for like kids with PDA, we always feel that when they're at home, that they are their most they're in their safe space, but that's not always the case. You will still get demands at home. My summer PDAs, you know, he was in burnout, he went to mainstream school, it was chaos, it was carnage, we had to home educate him for two years while we fought our local authority, all the same old shit that everybody that goes through because let's be honest, that's what happens. But when he's at home, we still have bad days, like this, it doesn't just disappear, doesn't just disappear just because he's at a specialist school or that we've learned more about it. It's actually on the days where you least are prepared for it that it should like kind of rears its and shows its ugly head. But when we're at home, we always try and like build a routine like between us all, like help him, like work in collaboration with them. We have a set rule that iPads at the weekends they're not allowed on until everybody's dressed and they've brushed their teeth. Mate, that is a game changer. We get you know that trust me, I've never seen these kids get so quickly brush their teeth and get ready for get ready in the morning so quickly if they know they can go on their iPad at half eight. That again that works well for us. You know, you can turn things into games, make it on a secret mission. Do you know what I mean? There's a lot of stuff that you can do at home, but also you have the absolute power and capability when your kid with PDA is a PDA, PDA is at home, is that you can completely lower the overall demand in your own house. When they have fewer demands, they have much bigger capacity to be able to cope with everything. So when you lower the demand, I mean it's a lot easier to do in your own house because obviously it is your own house, but also, like I was saying earlier, don't ask them too many questions. Asking too many questions is chaos for a kid with PDA. So we're firing questions at them all the time, it's not gonna help them, and it's certainly you're not gonna get what you know, not not how can I put this? Asking too many questions to them. I mean, it does my idea when people ask me questions, like fire at them. But remember, asking too many questions will always every single question you ask them is a demand. So stop, ask a question, pause, don't carry on speaking, and just try and let go of it being the right way. And this is one thing that is really difficult is letting go of what the right way is. You know your kids, you know them better than anyone else. And if you do it differently and it's a win, whoopee fucking do. That is it, you have found your way, and who gives a shit what anybody else says? Like, this is not your life, their life, this is your life and your kids and their mental health and their capacity. So I just always want to remind parents that just because you're not doing something that everybody else is doing, it doesn't mean that that's not right. And I, you know, it's about empowerment. This podcast has been about supporting people. My PDA parent circle community is about supporting people, and there is no right or wrong in this, but there what there is is the freedom to be able to make your own judgment calls and decision making within your own remit of your own child, you know what activates and accommodates them. But what the the the thing that's not not really got me off is what the anxiety sort of flex where this comes into it. So let's not forget any communication, any sorry, any behaviour is a form of communication. The meltdown is the tip of the iceberg, that is when it has gone past the absolute point of no return, and they cannot cope and they cannot they cannot hold it in any longer. When you understand the behavior and anxiety that is around PDA and how it, you know, and how it sort of how it all builds up. Their brain is registering so many threats they see you know every single minute and every single day. When they start throwing things, that behaviour is a communication that is starting to build up. Please don't take it personally. Their avoidance is not about being difficult, they're not being defiant, or they're not being disrespectful. They are trying to equalize that behaviour to get them back to a point where they are not going to go into meltdown mode. Remember, when they do meltdown though, it's not to tell them off, like don't lecture them, don't give them you know a bollocking because they've thrown something and it's broken. In that moment, they are they've gone past the point of no return. And let's be honest, dear, we're all adults, we all say and do things in the heat of the moment, and then afterwards we think, shit, I need to, I shouldn't have done that. You know, I've crossed the line here. Imagine being a child, and every single day that you get and you feel like that. So let's just like lighten up with our kids for starters. Also, I want you to notice patterns. Sometimes there are patterns for us that we we actually do see quite a repetitive pattern flex with our PDA, and that and that is the if he's hungry, if it's the time of day, and and it's all these sort of things that we need to really, really keep an eye on that you can keep, that you can that sometimes you can absolutely mitigate it a little bit, and you can if you use a threat and error management model, you can to avoid it, feed them, try and trap it, give them dinner at the same at the extra time, just so that we can because that you know the hunger, hungry PDA, uh Jesus Christ, you are you are heading for a slippery, slippery meltdown, and I and I think it's all these little things. PDA is very, very complex, but if we get the back the basics right, um it can be really really it can be really beneficial to us. And I think I think I've covered have I covered everything. I don't know, I've like kind of lost my trail. I didn't really have much to pend out today. I normally write out it, but just remember people, kids and people with PDA have a nervous system that they just experience. Is their demands of threat? It's not their conscious choice, it's their brain's threat detection system. So that's the amygdala, all right? Or I like to call her the Amy Godala because it cracks me up. Um, and basically it just fires a response into expectations, and you know, it's a survival response, not a behaviour choice, and that's what I just want you to remember. And the thing is, they you know, they have that loss of control, and it's genuine genuinely really, really terrifying and frightening for a PDA. And yeah, that's it. I just wanted to talk about the basics of PDA and going back to basics, sometimes I think get forgotten about. So this week, what I have just done seven days on in my in my corporate job, and I am telling you now, everybody, I am exhausted. I have gone from late to earlies, back to late, back to earlies, and I'm done. So I've got I'm off until Saturday, then I'm working just one day at the weekend, and then your girl is off for 23 motherfucking days. I mean, wow, I'm so excited. 23 days, and then I go back to work and I'm actually going to work in New York, so I'm very, very happy. I feel like we I feel like my overall mood and everything is so much better because it's sunny, it's not so dark, like we're through the winter months. I'm just like, yay, summer's on its way. Please don't forget to subscribe, download, rate, and review the show. It really helps my rankings. But most importantly, if you're feeling like you're struggling and you're losing your mind, come and join the PDA parent circle. Like, we are a vibe. I love everybody, past and present, that's been in the PDA circle. It's 17 pounds a month. Click the link in the show notes, come and join us. That's it for this week. Love you, bye.