Parents Lived Experience of Autism, ADHD & PDA

Chatting all things that are lived experience of life parenting a child with PDA, Autism, ADHD and the how difficult it really can be.

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Transcript

SPEAKER_00 0:00

Welcome back. I am your host, Jesse Towns, and this is the Keeping Shit Real podcast for parents to neurodivergent kids. Well, what can I say? What a busy week. I've had the busiest week ever. I've recorded about four different podcasts with an array of amazing people. And yeah, I can't wait for them to come out. So just keep an eye on my Instagram. They are, I was guests on their podcast, by the way. But next week, what I am going to tell you something very exciting is that I have the amazing Briany who has been a member in my PDA parent tribe community pretty much from the get-go. And she is going to be my guest next week because Brianie is a play therapist, and she also is a parent to a child with PDA. So don't miss it next week. So let's talk this week. And I'm really, really passionate about this. And it is one of my biggest bugbears, also, as a parent to two kids with ADHD, plus also one is autistic, high functioning, and has a PDA profile. I want to talk about the lived-in experience of parents and what generally tends to be sometimes an element that we are not believed, and just how difficult that makes everything else on top of everything else that we are dealing with. And the reality is, people from the outside looking in never really know what it's like parenting an autistic, an ADHD, or a child with PDA. Like, let's be perfectly honest here. And if you've met one autistic child, you have met one autistic child. So I think it's really important to remember that for us as parents, you know, it can all go horribly wrong before half seven in the morning. We could have had a terrible night's sleep, we could have been up repeatedly, our kids are can be awake from four, five o'clock in the morning. So our day starts incredibly, incredibly early. And I just feel that that is a massive, massive weight on top of the way it lives in our body, also, but also the way we are always braced, I think, for not the worst case scenario, but in terms of our own nervous system, because we have that lived-in experience, we are always on high alert. And what lived in experience looks like is going to be very different from me to you and to somebody else because no children are ever the same. And it's not about crisis, it's not about being in crisis all the time either, but it's the reality of in between. So trying to balance this all and and making sure that everybody is fed, watered, looked after, and safe is really, really difficult when what compared to what a normal neurodivergent uh neurotypical sorry families lived in experience looks like. And this isn't about it's not about having big dramatic moments, but it completely is about the accumulation of small ones day in and day out, and let's be honest, it is really fucking hard. And the accumulation of little things that you know tap away at you all day, and then all of a sudden, you know, you're going from naught to a hundred very, very quickly. And I and if you listen to this and you think, oh god, I've had a really bad day, don't give yourself a hard time. Bad days don't unravel because you've had a hard day. It's not gonna unravel and cause harm to your child because we are human beings, and this shit is so so hard. And I know that so many parents feel guilty that they've had a terrible day. Listen, you're entitled to have a terrible day. Fucking hell, I shout at my kids, even even though they are autistic, and one of them's got a PDA profile. Of course I do, because I'm a new normal human being, and sometimes even I can't keep my shit together. And this is about the acceptance of your lived-in experience, and some days are a bit of a breeze, aren't they? Other days we are fucking hanging on for dear life. But autistic ADHD and PDA profiles, they generally will layer a level of unpredictability on top of the baseline of it all, and and there is always that element that our nervous system, you know, piecing our nervous system together, plus having maybe demand avoidance chucked in, which is obviously their neurological need to protect their autonomy, that means that their environment is never fully neutral for your child, and therefore it's never going to be fully neutral for you. We are always going to be sort of trying to balance and juggle every single thing, and which then puts us into this massive state of hyper-vigilance. And the problem is when you're totally when you're hyper-vigilant all the time, that then becomes a survival response for us. We're always looking at ways to honour autonomy, we're looking at ways to make life easier, we're looking at ways to get out of the house, we're looking at ways to make our kids eat something, we're looking at ways for all hell not breaking loose. So that level of hyper-vigilance for our own nervous system is fucking insane. And so many people I think underestimate like our lived-in experience as parents, and I know for a fact that there are so many parents out there whose lived-in experience isn't believed generally by schools. I feel like this week that I have really had it in for schools and the education setting, and it's not really schools I've got it in for, it's the whole entire education system in the UK. As you know, my youngest son Moo attended mainstream for probably about three months before he continually started to get excluded and suspended. Then we fought for nearly two years for him to get a specialist school. So I do, and but the school were amazing. However, the education system and the way it is delivered is the issue. And when you've got that chucked in, as well as other children being at home, and maybe got kids that have been out of school for a long time or a short time, it makes it like it's just insane how difficult you have to keep your nervous system in check. And I do always just find it really insane when I speak to a lot of parents and they say to me, if your child's high masking, you know, they're really, really internalizing, and then school uh, you know, school don't believe your experience of what that's like, you know, that you know, their behaviour at home is the polar opposite to what they see at school, and I find that absolutely must be fucking soul destroying going to going home knowing that the teachers don't believe you. I mean, that's just to me, that is like the bottom of the you know, the bottom of the pits as far as I'm concerned. But there's all these layers of your lived experience when you've got autistic ADHD PDA kids. And there's, you know, there's I think if you look at it sort of like lived experience and how different it can be on a day-to-day basis, you've always got like that practical element, and that's you know, when things just don't happen, sometimes they're just not capable of doing stuff, and sometimes you're not capable of doing stuff because things don't go to plan. Plans collapse. We it may be for us that you're you've you know had to finish your career. For me, I've had a really successful career, and it took a back burner for two years. It was not my priority. I was very fortunate though that my employer were very accommodating and I was very transparent and they were very aware of what was going on, doesn't mean that I still wasn't pissed off. I felt resentment towards my husband because he was, you know, as much as we were balancing it together as a team, his his career has kind of sort of carried on, and I felt that mine was fucking in the gutter, but that's you know, never something to ever be underestimated about. And if you've had to move, if you've if you have had to move away from a job that is, you know, what you were passionate about, at some point, hopefully, you may be able to return to that. But as I think the majority of people that probably listen to this, and I'm just throwing it out here in terms of demographic are probably mums, and I think as mums, the mental load that we carry as mums is fucking so much higher and heavier than dads. That's you know, that is just a fact. So I think the mental load of carrying everything of you know, paperwork, forms, doing the school drop-offs, that is never something to be underestimated about. We've obviously also got, you know, in terms of practical elements, the friendships that fade away. I've lost, I haven't lost, uh you know, I've separated myself from some friendship groups because I just felt that they were absolutely draining my energy. I just felt that it they weren't in a place that were suitable for where I was at, and there was a massive lack of understanding. And actually, I think it's wild, isn't it? The internet in Instagram is insane. I've got more close friends from half the people that I've never met in my entire life than I have some of my mates that I have known for 20 years, and that is it a sad thing. Someone said to me, Oh, do you not feel sad? And I was like, nah, not at all, because there is always that element that I don't need to explain shit. When you're a parent to neurodivergent kids, that is also something else that I find incredibly draining, is the fact that you are um I'm very lucky though. I will say this if any of my my my mates are listening to this that are not my Instagram friends, I have a really close knit over the years. I have like completely tapered down my friendship groups. I used to have a lot of mates, but some of them are just wankers, and I have cut ties with people that no longer served me. And I, you know, that may sound brutal, but that's my ADHD kicking in. I was like, nah, fuck this, you're draining my energy. And actually, if you've got people that make you feel like shit, get them out of your life. Let me tell you, it will be the best thing you do for your life, for your emotional state. And yeah, I the older I get, the more I'm like, nah, fuck this. If you're not serving me, I'm just done with you. But friendships that quietly fade, they can be really difficult, and also it can be family relationships that fade also. People call less, they don't come around. You may that may be off your own back that you don't want people. I know for us when my son, my PDA, was in burnout, we couldn't have people in the house. It was just too much of an absolute car crash. This was his safe space, and he didn't want people in the house. And I respect his autonomy and I honour that, and he is my child. And if he doesn't feel safe in his own house, then that kind of reflects my parenting, I I felt, but also maybe people that you don't feel comfortable going to their houses anymore because they are not neuroaffirming and they don't get your child and what your child's needs are. But I also feel that you lived an experience out. There's also that that part of that your identity. Who are you? Who were you before, like compared to who you are now? And the grief of what that life looks like can be nothing like you ever would have imagined it to be, and then there's always that part of I mean, I still do it now, and we're on a pretty sort of even keel. Yeah, we have absolute fucking car crash days, but I sometimes feel a little bit guilty for grieving that my life is not as textbook as it should be with my parenting. Um, for those of you that know, we have an older son, he's 17 and he's neurotypical. The the the twins are eight, so we have you know a very big age gap, and my eldest son was an absolute textbook of a child. He was the pretty much, you know, just a really normal, easygoing kid. And I think initially when the twins when it started to be put on our radar that something wasn't just you know, something just the math weren't mathing, so to speak, I started to grieve how easy it had been with my eldest son, and it's absolutely okay to grieve that life because we're fucking human, and it it's difficult, it's like life's hard, and you know, chucking all this in at you is really, really difficult. And I feel that it took me for a very long time. I was very, very much a pity party for me. I felt so hard done by, I felt really mugged off. I felt like this was really unfair. For those of you that know, my mum passed away after a very long battle with leukemia. Well, she didn't die from leukemia, actually. She's in remission, she had respiratory failure, she was in intensive care for six weeks, and she then she decided to stop her treatment because she just had enough. Um, and I felt very, very sort of I don't know, I felt very guilty for a long time that it was very, very unfair that I was doing all this shit without my mum by my side, and it took me, I was just remember, I had a really pivotal point in my PDA parenting journey where I was just like, fuck this, I need to just get over this, and I need to accept that this is different, and I need to be a different parent to the parent that I was of my oldest son. Um, and that moment for me was I was taking Maxie to his mainstream school. We'd had months and months of suspensions and exclusions, and he didn't want to go in, but I was so exhausted and tired. I basically dragged him into school, and it was just at the classroom door, was just so traumatic. He was screaming, I was trying to push him in, you know, and I was at breaking point, and I and then literally just fucking collapsed on the floor and was like, I just can't do this anymore. So then at that point, I decided, like, no, he is going to be on a reduced timetable, we're not doing this anymore. It is just too much. Um, and I remember coming home with him and sitting him on the sofa, and I just thought, shit's got to change. Like, I am so stressed out by this expectation of how things should be. And the reality is things change, plans change, it doesn't matter, even if it's your kids, if it's a you know, a plan for going out, you know, shit changes, and you've got to roll with it, unfortunately. And I just remember that was my point where I was like, nah, I need to change the way I parent, and I also need to sort my shit out and honour my kid, you know, and then also that lived in experience. I thought about touched about it then, really. You know, the emotional layer is really difficult. There, you know, we're obviously going to feel anger, you're gonna feel exhausted because this is exhausted, and sometimes you can feel completely elated and in really joyous because your child's eaten a different food, and people that don't have all you know, don't have neurodivergent kids don't get that, and you you can have all these wild emotions in the space of like half an hour, and then you've got to try and hold it all together, and that's a really complex thing to try and fathom as well. But I always find that there is quite there's there is a big sort of isolation I feel from people that don't get it, you know, it could be your other half, it can be your family, it can be other parents, and I think sometimes a lot of people do feel that they are saying and doing the right thing, but there's an element of of why why on earth would you even think about saying that? And and I mean for ages I would like spiral down like into this spiral of shame that I was a shit parent. Uh, if I was a better parent, this would be so much easier. And I there wasn't I felt for a very long time that I was causing it, and and and to be honest with you, there was a massive part of me that that was absolutely right. I didn't know what the fuck I was doing, I had never really heard of PDA. I was trying to, I think, parent through an autistic lens and not a PDA lens. So obviously that was a recipe for disaster. There wasn't until about three, maybe four years ago that I started to deep dive into PDA and what it was, and what is this, and how can I be how can I be better at parenting my kid because something is not fucking right here, and I am I felt that I was making things a lot lot worse. And actually, I was making things worse because life's trial and error. You're not a perfect parent. I always say this if somebody says they're a perfect parent, they're chatting absolute shit because nobody is a perfect parent. And sometimes things really, really help, and sometimes things really, really don't help. Things that I just feel that really, really do not help is advice that's just built for any neurotypical family. You know, that being consistent is a strong one. Having you try like, have you tried a reward chart? Yes, I have tried a reward chart, and it's been put in the bin about seven times. I know that people very mean quite well a lot of the time, but it's like behave, like, can you stop? Can you please stop with this madness now? And I think there's also a big difference between getting through it and actually being okay. I think you know, we are hyper-vigilant at all times, we are trying to get through stuff, but actually there's a massive difference between pushing through and actually being okay. And this isn't a limit about eliminating hard days. Hard days come and hard days go, but the difference about getting through it and actually being okay is admitting that the days can be shit, the days can be dark. Because co-regulating is not just about your child, it's about our nervous systems too. Like our nervous systems get activated. Jesus Christ, my nervous system gets activated all the time with my kids, even my neurotypical one. And you need to find, I talk about the window tolerance all the time, and we need to find you need to find your own window tolerance because sometimes there are some really small things that you can do in the moment that are going to alleviate the stress and the chaos and the absolute pandemonium. And there are sometimes there's moments where it's quite steady, it's quite easy, and that can be really unpredictable. Some days you could start off on a really steady day, and then in the space of five minutes, all hell's breaking loose, and then that window of tolerance, I talk about it all the time, you know, on a when you've got a low tolerance day, why are you gonna try and do a load of stuff? And this is what I say to my husband all the time. You know, I work a lot of weekends, I work away, and I always say to him, just measure your own window of tolerance because there are some days, you know, we have shit night's sleep, you've had your kids in your bed, you've been in musical beds, everyone's up really early, and you are tired. You know, I'm in my well, dare I say it, am I in my late 40s? I fucking am, aren't I? I'm 46, Jesus. I'm in my late 40s. Ugh, I'm not gonna say that. I'm gonna say I'm in my mid-40s because I've only just turned 46. That makes me closer to 45 than 40, 50, doesn't it? But it's about understanding that some days your own window tolerance is incredibly low or so. So why the hell would you want to try and go out for the day? And again, that brings quite a lot of grief that you know you've had all this stuff planned, and then all of a sudden it's just gone totally, totally tits up. And I feel that lived experience is it's really powerful when somebody is when somebody truly understands, and that could be through a community. You know, I've got a paid-for community of PDA parents, and I tell you what, we're a vibe. Some days I'm just like, thank fuck, it's not just me. And we all share our lived experience, and some days the group chat's absolutely popping off. Some days when we do live sessions, someone's like, Oh, yeah, I've had an absolutely car crash of a day, and somebody else is like, Oh, so vi, uh you know, and it's about coming together, and it is about being a community, but lived experience is so so powerful because it stops you feeling alone, it stops you feeling like you're going fucking mental, and sometimes you can be the only person in the room that gets it, and having that safety, I call it I think it's more of like a safety net of thinking and feeling that you're not failing, and it's so so powerful being around people that truly understand it. I think when you have that lived experience, this life is hard. And I mean, I had some crazy ass troll on my case last week on Instagram, and I kind of was sometimes I clap back at trolls, other times I just delete and block them because I am very much a queen of manifestation and you know, sort of leave me alone, and I feel that if you clap back, it makes me just as bad as a troll. But somebody left a comment on a post saying I think I can't remember what the post was, I think it was about shit that annoys me actually as a parent for an autistic child. And there were seven or eight pictures on there, and I think there was only there was one photo that one one text on one of the carousel slides that said about you know the absolute exhaustion of constantly advocating and not knowing if a you know fit a bomb's gonna go off, and they were having a dig out at me saying that I was whinging about my child and whinging about the fact that they they were neurodivergent, and I was a bit like, mate, fuck off, literally, and that's just what I responded to him. I was like, babe, I commented and said, babe, fuck off. Have you got neurodivergent kids? And he was like, No, and I was just like, mate, get back in your box, like stop being such a prick. And I just and it just made me realise that nobody really understands this absolute carnage that we have, and it's just one of those. That until you get find your people, so to speak, it can be incredibly time consuming and draining of your own mental health because it's it's one of those people that don't have lived experience, just they absolutely do not get it. I'm sorry, but they absolutely don't. Um I think very close family members that see your struggles day in and day out, they do get it. And because they're our family and they are loving and they are accepting, but there may be some times where they don't, and it's it is difficult. The lived experience is never underestimated, and that's one of my biggest things that pisses me off with schools is when parents aren't believed. And I just think if you can take anything away from this episode today, it's just think of one time, one moment, even this week or yesterday or today, where you completely fucking held it together when everything was falling apart behind you and around you. That counts, and that is absolutely enough. And I think sometimes as humans, we are really, really quick to focus on what hasn't worked well and what is a car crash when actually there is so many positive things that we do day in and day out to parents as parents to neurodivergent kids. So just focus on that. That is it for this week. I am going to the doctors now, so I better get off this. Next week is going to be the amazing Briany. And remember, if you are a parent to a child with PDA, I run a great community called the PDA Parenting Circle. You can click the link in this notes and also please download, rate, review, and subscribe to the pod. It really helps. Anyway, that's it from me. Have a fabulous weekend, everybody, and love ya.