EPISODE 8: DUALLING NEURODIVERSITY
~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 0:16
This is the f**king normal podcast, the cheers, tears and Friday night beers of parenting disabled children. I'm Rina. And I'm Lauren.
Rina Teslica 0:26
And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.
Lauren Fenton 0:41
Prepare to sometimes laugh, sometimes cry, but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective. We would never presume to talk on behalf of the disabled child or adult. So expect bad language and quite frankly, some brutal honesty.
Rina Teslica 1:00
Because really what the f**k is normal anyway?
~music~
Wake me up loud as clouds, all my love for you.
Lauren Fenton 1:15
Hello, and welcome back to another episode of the f**king normal, where today our topic is dualling neurodiversity. And we will talk about the parenting experience when both child and parent are neurodivergent. So neurodiversity describes the variation in the human experience of the world. The idea that people experience and interact with the world around them in many different ways. There's no one right way of thinking, learning or behaving, and differences should not be viewed as deficits. As parents to neuro diverse children, we all see firsthand how often neuro variance can butt up against an ableist world full of social expectations and neurotypical norms, but with reportedly 15-20% of the world's population, exhibiting some form of neuro divergence. Isn't this just f**king life in all its richness? Is it and isn't the world all the better for all this diversity?
Rina Teslica 2:12
So our guest today is Bryony Kimmings, famous for her brutally honest autobiographical shows. Most recently she created I'm a Phoenix bitch, which touches on motherhood and mental health. So Bryony was diagnosed as having ADHD at the age of 40. Her son Frank is seven and is autistic. Bryony was diagnosed the same year that Frank got his autism diagnosis. And it's fair to say that they're doing neurodiversity in their own way.
But before we chat to Bryony, I want to provide some clear context for people who don't know, ADHD in medical terms is attention deficit hyperactivity disorder is a condition which is characterised by inattentiveness, hyperactivity, and impulsivity, plus, it includes positive traits like hyper focus, creativity, spontaneity and resilience. Autism or ASD. Autism Spectrum Condition refers to the broad range of conditions characterised by social and communication differences, repetitive behaviours, reliance on rules and boundaries and routines, and an increased sensitivity to different stimulus such as sounds, taste and touch. Welcome Bryony
Lauren Fenton 3:24
Welcome. thank you so much for coming on the f**king normal. How are you today?
Bryony Kimmings 3:33
I'm good. I'm really cold in my house and heatings off. And I'm like, excited but also in a little ball
Lauren Fenton 3:43
the way to be.
Rina Teslica 3:45
As am I. Plus, I've got a hot tea so I can like warm my hands constantly.
Lauren Fenton 3:50
Sorry
Bryony Kimmings 3.51
Good idea.
Lauren Fenton 3:53
So I guess we'd like to start with talking about not the very beginning. But about you and Frank and your diagnosis given that's what the topic is. It's about neurodiversity and the fact that you both share that kind of neuro diverse label. I mean, maybe it would be helpful to first introduce yourself and Frank and tell us a bit more about Frank and what he's like, before we get into the diagnosis.
Bryony Kimmings 4:26
What is Frank, like? He is a little joyful being. He’s very into nature. He's very chatty. He's really emotional and needs quite a lot of emotional reassurance. And he's, he's quite sparkly likes dressing up and putting on shows. Sound like anyone you know?
Rina Teslica 4:55
Apple tree, Apple Tree,Yeah!
Bryony Kimmings 4:57
I know. I know. It's really difficult to know whether I've just forced it upon him or if he is actually naturally a performer. Yeah, he's sensitive, sparkly and sensitive, I'd say.
Lauren Fenton 5:09
What kind of precipitated the diagnosis process for Frank and I said it was Frank diagnosed as autistic fast. And then yourself what? Tell us about that? Yeah. What happened? Why did you guys seek the diagnoses?
Bryony Kimmings 5:25
Yeah, interestingly, I mean, you know, we're all friends, we all know one another's children. And I'd been really adamant with Clare, another one of our friends who's done this podcast, like, Frank isn't autistic, like, he just doesn't display those symptoms, like I look at aAda, and he's not her, you know, like. And after it all happened, she sort of looked at me and was like, Well, I obviously knew he was, but you can't, you can't say that to somebody else, you have to let them go on their own journey. So I think. for me, it was like really shocking when the neurologist sort of said, I think we're going to test him for autism, because I was just like, I think like, most people, I was like, well, he's not rain, man. He doesn't count cards when I drop them on the floor. He doesn't love maths, you know, so and I think I was looking at it through that sort of, really, I suppose really media kind of concocted version of it. And so I still went into the assessment when he was like five thinking, this kid's not autistic, like, yeah, he's got disabilities, he's got, you know, he's got neurological differences, but he's not autistic. And then we got the diagnosis of atypical, atypical, you know, like, Oh, what's that mean? So that that happens, like, oh, he doesn't, you know, like, it's not presenting, in the sort of maybe the dominant version of that, of what that looks like, what the spectrum looks like, but he's certainly displaying some of the elements of it. So then, so then it's like, okay, where is he on the spectrum? I can remember saying, that to him, like, “well if this is a line, and this is good, and high functioning, and verbal and intelligent, and will be Bill Gates, or, you know, whoever Steve Jobs, and then on the other end is like, nonverbal. You know, you know, bad, bad, good or bad” you know, and they were like, “Oh, here's a book on autism. And it's not a spectrum, like a line, it's a spectrum like a circle. And if you imagine a colour spectrum, like there's seven or eight different things that can be present in an autistic person, and they'll have different gradients of each of those, and that's why it's called a spectrum, like a colour spectrum.” Okay, you know, so I'm like scrabbling around thinking, he's not autistic, then what even is autism?
You know, I don't think I've even like thought about it. I had a friend who was when I was growing up in my teenage years who had severely autistic brother, and just, that's just what I think of autism, as you know. So, I was so shocked at him. And so, I think, you know, as with all of these things, grief comes into it, you know, grieving some kind of dream. Even when your child has complex disabilities, like my child, and everything's always changing, everything can slide backwards or stop. You're still, as soon as you get something, aren't you, you're sort of going well, at least I can fixate on that, you know, in the future that and then something will come along and punch that off you and you'll be like, Okay, well, he might not ride a bike, but like, Okay, wellhow about that. Maybe he'll be able to write his name, you know. You're always just scrambling around for the sort of the logical next step or the way in which you can kind of deal with it.
And I think I spent like three months, just like, What the hell am I going to do? Like, I've got to change everything I've been doing like, I was disciplining him. You know, disciplining an autistic kid for basically being autistic is like, like, I still think about it now and hate myself for it. You have to really work hard not to really go into the Doom about those kinds of things. But yeah, okay, change everything. Everything needs to change. So it's like I did a course. They send you on a course don’t they, they love to send you on a course. Have a couple courses! Read this book! You're like, okay, sure. I haven't got a full time job and I’m not a full time single mum. Don't worry, I'll just absorb all of the stuff. And I revolutionised kind of how everything worked in our house. And of course, when you do that for an autistic person, you're creating an environment that helps them to thrive, right so you're creating the non-medical model of disability, you're creating a social model. What do you need? What do you feel? and trying things for like, a few months, it was like, someone sprinkled magical dust on our house. It was like you know, like, you've got a got a key to the door thing. But because I was because I was doing all that stuff. You know, pecs pointing images to pointing out what do you want this or this? And how do you feel and what do you need? And I started to think, oh my god, like, I need this stuff, right? This stuff's really great. Like, this stuff's amazing. Oh, shit. So, my therapist had said to me a few times, I think you might be ADHD.
Lauren Fenton 10:30
And did you know what that meant?
Bryony Kimmings 10:33
And you're like, No, so like, and this is the thing again, like, even though you've got a disabled kid, you're still like, I'm not ADHD. ADHD is little boys who f**king fling themselves out of windows in naughty schools, you know, like, I'm not ADHD like, shut up.
Rina Teslica 10:48
So it wasn't so like… you'd already heard. Like, it wasn't like the ADHD kind of diagnosis came out of left field, you'd already had somebody talk about it with you,
Bryony Kimmings 10:59
It was around the same time. And I remember going into my therapy, probably one of the last times I actually saw her in person before the pandemic. And like, you know, another story of like, how I'd overdrank at the weekend, or I'd, or I'd spent money on my credit card I didn't have and like, or like, I just, like, destroyed something just to like, just destroy it, and then stress out about getting it all back together again, you know, like, just this this constant, repetitive destroying destructive behaviour. And, like, you know, when you're in your 30s, maybe your 20s even more so. But like, not when you're in your 40s Like, you're like, I used to, I used to think it was cool, you know, I'm edgy. Like, I just, I just go places then trash ‘um, you know, like, and then it's like, you get to 40, like, what am I doing? Like, I'm a parent, you know, like, You're not a kid. This isn't rock and roll. This is actually real life. And she's sort of just I don't know why she did it this way. But she just sort of went as I was sort of walking out the door, she was like, I think you might be ADHD!
Lauren Fenton 12:06
Way to deliver it.
Bryony Kimmings 12:09
Like, I don't know, she, she never really explained why she did it like that. And I don't know whether she just had thought about it. But it was just, I just remember being out in the street all of a sudden being like, nah.
Rina Teslica 12:25
Did it make you think? Did you stop and be like, hold on a second maybe?
Bryony Kimmings 12:29
Well it was, it was in there, you know, like it was in there. So when I was getting Frank's autism stuff, it was in there. And I think Tim and I, that's Frank's dad, I think both of us have always toyed with the idea that maybe both of us in neuro-diverse in some way, like I mean, when you have a disabled kid, you know, they're testing you genetically. They're asking you about your own lives and you start to think, Hey, man, maybe this is coming from me. You don't really think about it. Until then do you don't if you don't identify as disabled, if you have a disabled child, suddenly you're like, Okay, what part of that child is me? Yeah. And was it me? Was it me? Was it my genes? Was it my, you know? So I think we had been thinking about it, but yeah know, it was like when I started to do all the pecs stuff and all the kind of like looking at trying to make our house into a neurodiverse kind of wonderland that it was like, oh my god, like, I think she might be right.
Lauren Fenton 13:23
I was just gonna say did that change how you then viewed your life looking back when you when you started to kind of learn more about ADHD? Did you see yourself very differently in terms of your childhood and, and the 20s and 30s.
Bryony Kimmings 13:37
It was like, of course. Oh my God, it was like so first of all, I was like, Okay, this obviously isn't just little boys in the classroom. This is like, I need to really look at it. So I listened to an audio book because hey guys, funnily enough, I've never been able to read a book because I'm ADHD you know, like so I listened to this audiobook Sari Solden. It’s by Sari Solden. It’s something like women who have ADHD, because people had started to get diagnosed a bit more. Friends of mine were talking about it was starting to be a thing. And it's a real thing now. And so I listened to it and, and everything, you know, everything she said was like, Oh my God, it was like ticking off a list. And that for me is a really was a really difficult thing. Because I think I thought I knew myself, you know, like, I thought I knew. I thought I knew everything. I mean, I always say this in every stage of my life. I know everything now. You don't. Maybe I should just stop thinking I know everything. But um, I it was like, Oh, my Goodness me. Okay, so it opened this like, wound, I'd say, an old wound that perhaps I'd always had, but hadn't it always been. It's, oh, don't touch that wound. Like don't touch that. Like, you know, it was like don't touch that. And then it was like, Okay, I'm gonna have to touch that now.
To get assessed, you have to, a bit like Frank really, you have to speak to your mum, right? You have to your mum has to Yeah, like, which is really hard, right? Even if you have a good relationship with your mum it’s critical, isn't it? In a way, it's like, okay, you get a form and it's like, right. So, for example, do you do Stim? Like do you flap your hands or jump up and down when you feel happy or anxious? No, I don't, in adulthood, but I feel like I want to a lot. But I don't right and then I'm sitting with my mum. Like, did I? presumably I didn't do that? as Oh, do that as a kid like, oh, no, no, no. Yeah, I used to like trot on the ground like a horsey. And we used to say, Oh, stop being a horsey, you know? So it's like, cool. Like, you know, try not to try not to react because that's your mum, you don't want to be like, errr didn't you think that that was strange, but also it was early 80s. And no one knew about this stuff. So I was trying not to be critical. But you know, thinking to myself, if I like thinking about that moment, when I thought, oh my god, I disciplined Frank for having a meltdown. It wasn't a tantrum, it was a meltdown. And then thinking that's happened to me, that happened to me ‘stop trotting’, ‘stop pretending to be a horse’, ‘Keep still’, you know, so I was, I suppose, grieving myself, while simultaneously also trying to ensure that he didn't have the same experience. So I guess in some ways, it was really positive, because it was like, I know this. But in other ways, it was really negative and sad, because it was like, I had to unpick everything. It's like putting a whole new lense on everything and looking through it and, and saying, oh, that's why I never had good relationships. Oh, that's why I've never been good with money. Oh, that's why I'm hypersensitive to emotions. And people have always said, I'm dramatic. No, that's why I have a job as a performance artist where people clap me every day, because it's dopamine I'm looking for, like, that's why I drink so much. That's why I've had sex addiction. Like it's like everything.
Rina Teslica 17:22
Did you feel seen because it must have felt like, oh, wow, like your you got a mirror that's like held up to you. And you finally can understand yourself a little bit more. I can imagine it feeling quite liberating, in a way.
Bryony Kimmings 17:38
It was after a while, first of all, it was devastating. And then it was now I think of it as a gift. You know, it's unlocked many things, one of which is self care, and knowledge of oneself enough to change the patterns or to live more as myself. But yeah, I think once I was medicated, and once I realised that first, you know, this is me again, like, I'm, he's got that wrong. He scored up the form in front of me and said, Oh, yeah, you're definitely ADHD. And I was like, Yeah, you don't know anything, you know. And he was like, Well, the best way to know and the way in which we can definitely confirm it is if you respond to medication, I'm gonna give you some seriously strong speed. And if you feel speedy, and you feel like your jaw’s going and your heart rates up and you're, you know, you feel really speedy, then you're not ADHD, we've got this wrong, something else. It might be like a borderline personality disorder. It could be autism. You know, there's something going on here though. And I was thinking to myself oh no, I know what this is gonna do, because I've, all of my friends, all of my life has been like, How come you never get fun? Everyone is super high. And I'm just sitting in the corner being like, I'm just gonna write a shopping list. You know, like, I'm gonna read this book. And I was like, I knew as soon as he said it, I was like, okay,
Lauren Fenton 19:02
so it rebalanced you almost as opposed to made you speedy.
Bryony Kimmings 19:07
Yeah. Like, yeah, absolutely. Everyone's always commented on it. Like, it's amazing how many drugs you can put into your body and never
Lauren Fenton 19:15
like a superpower.
Bryony Kimmings 19:16
So I took it, and I couldn't, because I wasn't drunk or because we went on a night out and it was controlled, and it was a small dose and I forget, for the first time ever, I guess, must have had the clarity that non neurodivergent people feel on a normal day, right? And I was just like, I was like, Oh, my Goodness me. Like I was like, hang on a minute. If this had been how quiet, how focused, how non scattergun, non anxious, non ruminating, non extreme emotions like non flicking thoughts from thing to think how none of that was there, I would run the world. If I was not neurodivergent I would be president of the World by now, you know, like, because it was like, oh my god, it's like the noise just stopped like that. Not everybody responds like that. Like, I've got a lot of ADHD friends who struggled to find the right medication. But for me, it was like, the drugs were just like, Okay, this is what it feels like to be normal. I was like, Oh, my goodness me. Oh, yeah I am ADHD.,
Lauren Fenton 20:30
And you started that, I guess, acceptance that you talked about?
Bryony Kimmings 20:39
Yeah, then it's possible to kind of, then it's possible to kind of start looking at it. So really, in a really less grief stricken way, because it felt like I was getting somewhere in it. Like, it felt like all those things that always felt like a burden, returned down a little bit, so I could get somewhere so I can be like, Okay, that's what that is the reason why I haven't ever really quite been able to grasp my finances or really ever been able to, you know, just have one drink like, or not stop showing off on stage and be called back all the time to that kind of dopamine hit is because that's what my brain is needed all this time, a deficit of dopamine has been present. And now I've got that dopamine, I can start to think about how I can change, change my existence through talking therapy through different types of dopamine and start to think about, it was forgiving, it was like it's not your fault. And I think a lot of people with ADHD and autism have been led to believe that they're difficult, or they're led to believe that this, you know, this is your fault. You're just defective in some way. You're just kind of, there's something wrong with you.
Lauren Fenton 21:49
Do you think that was helped by Frank and going through the autism diagnosis? Would it have been a different process if it hadn't been precipitated by that journey, for Frank's diagnosis?
Bryony Kimmings 22:03
Everything would be different if, if I didn't have Frank, you know, it's like, in a way, in a way, when you have a kid you, you care about them, way more than you care about yourself. Like, sadly, you know, now I'm learning through therapy that, to love yourself is like, 101, you know, like to really care about yourself and to come back to yourself. But yeah, like, it was, weirdly more important for me to get my shit together to parent rather than to get my shit together for myself. You know, it's like, anything I can do. It's always been that anything I can do to help him. And in some ways, it's quite nice, because you can be like, Okay, I'm going to try and fix myself because I've got something other than me. to do. You know. So yeah, it would definitely, I don't think it would have happened. If I hadn't had frank, I don't I think I would have spent the rest of my life just being like, oh, yeah, maybe I'm a bit annoying and a bit weird and a bit over dramatic. And, and you know, that had caused such great anxiety and depression in my life, because that's what that does, if you don't diagnose neurodiversity, or you don't create an environment where it's okay to be neurodivergent you comorbidly develop extreme mental illness or mental health problems. So,
Rina Teslica 23:22
You talked about that when you did that. I'm a Phoenix bitch and your struggles with postnatal depression. Do you think that was made worse because you had the ADHD that you didn’t know?
Bryony Kimmings 23:34
Yeah, I think it was overwhelm. And yeah, it triggered a sort of psychosis in that way. But I think now I look back over my life. I can see periods where I've been extremely depressed, and just denied it or, or just medicated it with drink or drugs or perhaps with, you know, actually, no, not with normal medication. It's always been like, yeah, it's always been present, but I've never been even thought about the fact that it's like solvable. You know, that actually, you don't have anxiety or depression, you have ADHD. And because it was undiagnosed for a really long time, you've developed anxiety and depression. And I think it was really helpful for me not because there's anything wrong with having anxiety and depression. But because it was very helpful for someone who needs logical explanation for things to say, okay, that's, that's logical to me. You know, stop trotting, shut up. You're overreacting. Sit down and be quiet and just stop beings quite so much to a child and then for the rest of your life that is going to cause massive dis ease and trauma. Yeah. So then then that thought is like, anything I can do to stop that from happening to Frank is like, I have to do everything humanly possible.
Rina Teslica 25:12
Why don't you tell us kind of what the day to day living is like for both you and Frank, kind of what does that look like? How do you live your lives?
Bryony Kimmings 25:21
Well, before the diagnosis, it would involve a lot of drinking in the evening for me to try and block out everything that was going on. In the daytime, it would involve a lot of small amounts of play, putting on the television to go and have a rest in the kitchen and then back in for like, a small amount of play, and then back again, and I recognise that I was. I was doing what I needed to do, but I didn't know why. And so then the evenings will be full of guilt for like, perhaps not engaging as much as other parents could not that I mean, he was getting a lot of my time. But a lot of hiding, you know, resting, coming back. Because Frank’s play is extremely repetitive. Its way feel safe. It's what he wants to do, is repeat. And for an ADHD person, your worst nightmare is to do a boring repetitive task like it’s we’re polar opposites to one another.
Rina Teslica 26:29
Like how it must have that been so difficult, because it's it goes so against your nature to do something so repetitive.
Bryony Kimmings 26:35
Yeah, I mean, you, you do it, because you love them. And you're like, I must do it. But you're also making yourself ill by doing it and not knowing why. And then I think that that was causing so much anguish for me, because it was like, why can’t I do this? Like why? Like, what difference does it make if you pretend to be a dog 7000 times in the same game, which is essentially still going on, which is you walk past me, mummy, I'm a dog. I'm lying on the floor. I've hurt my arm. And you say, Oh, this poor dog has hurt his arm. And then you pick me up and put me on the sofa. Right? Okay, I'll do that. And then, okay, again. And then he lies back down the floor. And I have to walk past again and say, Oh, this dog has his arm, you know, and to variate it, I might be able to get away with like, let's see if we can bandage it up. And sometimes he might be like, No, that's not how the game works. But sometimes he might be like, Yeah, let's bandage it up. So, like, why can't I just do that? What difference does it make to me? To do that? I mean, it will drive anyone insane, right? But I think for me, it was like, almost impossible. Anyway, so that was before and then getting annoyed that I get annoyed, you know, or getting or him getting upset because I'd said look five minutes, I don't want to play the dog game, you know. And also single-parenting is super intense. So you don't have someone to go, like I'm having a bath. Get this kid away from me for like half an hour and then I'll be back refreshed. So now it's really really different. It's really different. He's older, so able to articulate himself more and able to understand my needs, he's learned a lot more how to say what he needs and how he feels. He understands that mummy is also neurodivergent so we can both take turns to sit on the fizzy cushion or to move away
Rina Teslica 28:34
Does he understand that you have a neurodivergence as well. Have you explained that to him?
Bryony Kimmings 28:38
He understands that I feel like I'm having a meltdown or I feel like I'm fizzy. Or I feel like I need to empty my worry bucket like he does know that I also am the same as him which I think he quite likes. And so we also live with two other people now so we live with my partner and his daughter so there is an element of it being like okay, somebody tag team, which is helpful, but I think more it's and I said this to you when we were talking before we did the podcast it's like “happy mum happy baby”
Lauren Fenton 29:21
I hate that!
Bryony Kimmings 29:23
But it's true actually, is true annoyingly. And even more so if you have special needs kids it's like the more I put into my own healing the more I put into my own mental health the more I choose positive dopamine hits over negative, the more I'm able to help him so. You'll see me you know they always say like I don't know if they still say it now but like 10 minutes of play a day is so 10 minutes of one to one play for any child is just enough. And it's like, I think that's bullshit because you need a lot more than that, but Uh, but like, apparently, that's all you need to do. But like, I am having my mind time for him, you know, this is the time this is when I'm actually going to do stuff. And this is when I'm not and that's okay. Like, I'm going to take myself into the garden and do some meditation, I'm going to put him in front of numberblocks, because he absolutely loves it and he needs a rest. And then we're going to have a really good play at this, and I try my best to just organise our lives into sort of, what we both need, I'm drinking less, he's drinking less. Yeah, we're just a bit more forgiving. I think it's more he doesn't quite grasp his own self, yet. He's only seven.
Lauren Fenton 30:48
What does he understand about neurodiversity then? What have you taught him?
Bryony Kimmings 30:52
Tricky to know, because they always say, ‘don't tell them like they will ask you’. But I always thought that was a bit mean, because it's like, it's almost like they come asking you once something's happened that's made them feel different or weird. So I just tell him he's autistic. And I say it means it's got a totally different type of brain to most people. Mummy's ADHD, that means she's got a completely different brain to other people. And we see the world in a different way. And we feel differently. And I’ve tried to explain to him that lots of people don't really understand that. And it's really important for us to understand ourselves so that we can articulate what we need to other people. But sometimes he'll say, I'm autistic. And I don't know whether he's just parroting that or if he actually gets it, but every now and then in the car on the way to school, we'll have a little deep and meaningful about, you know, what happened that's hard. And how do we overcome that and over time, I know, he'll start to really be able to articulate how he's feeling about his autism, but he's actually more emotionally articulate than most kids. I meet, you know, he's able to say, I'm feeling on the verge of a meltdown, I need to go and bounce on the trampoline, I need you to squeeze me. I don't want to get dressed for five minutes until my body's warm,, you know, like, he's completely Yeah. So I think it's a
Lauren Fenton 32:21
Credit to you and your, your, your embrace, you know, embracing of what you need, what you feel kind of sentiment.
Bryony Kimmings 32:33
Yeah, he goes to a really good school that's very inclusive, very small, and lots and lots of people with neurodiversity. So it's not a special school. But it is close, you know, it's sort of he's always been on the cusp of what was not been sure whether or not he should go to a special needs school or not. And I think for secondary, he's certainly not going to be able to go to a large comprehensive 30 kids in a class kind of deal. Probably go to an autistic secondary school. But um, it's very much a place that's like, whatever you want, whenever you need, like, everybody has sensory toys, everybody can leave the classroom like it's a really really beautiful school. So I moved him from quite a full on city school moved to the middle of nowhere to get him into this really, there's like eight kids in this class is just like a comp, like a state school, but just happens to be like a tiny village
Rina Teslica 33:28
Heaven
Lauren Fenton 33:29
Does he. You know how you've just described how he kind of, to some extent understands autism, or you certainly there's there's threads of understanding there about difference and neurodiversity? And does he ever reflect back? You know, mummy might need time out, or mummy might need you know, your own neurodiversity?
Bryony Kimmings 33:50
No. He sometimes asks me if I need the fizzy cusion, like, if I'm getting a bit cross he’ll be like Go and sit on the fizzy cushion. But he is more and more now, he asks me if I'm alright. Like he'll say, like, I might say, Ah, why are people why would you do that like or something because I'm quite get quite fiery about I don't like injustice. And the other day is like, why would you pull out like that, like, you know, car park or something and you put his hand on my shoulder and you when you're I was like, I know I was like not really? And he was
Lauren Fenton 34:34
So wise.
Bryony Kimmings 34:37
Yeah, and he strikes my head, my mind. It's difficult, isn't it? Yeah. I feel like the sad thing is, and it's hard to think about is that people are cunts aren’t they! And I'm like the thought of him. Before of people being horrible to like, you know, it's like my worst nightmare. Of course, you know, this feeling is like people looking at him, people judging him people thinking they're better than him. Like, it just makes me want to punch them. But I can see that he's probably going to be one of these sorts of people that says, like, let them just like he's gonna be. I'll just get on with myself. Yeah, I think it's interesting to look at yourself, like I do a lot of transactional analysis, which is, it's like a particular type of therapy that, like, you look at your child's self, and you look at your parents self, and you look at your adult self. And it's like three different versions of you all having a big fight in your head and most of the time, and like when you're doing transaction analysis, you can start to identify when you might be in child mode, particularly like, you're like reacting to something, but you're not reacting in your adult self. You're like, yeah, my toys, or don't put that there are like, you hurt my feelings. And it's like, you're in child mode. And I guess my child mode is like, super defensive, really scared, like really traumatised for all manner of reasons and one of which being undiagnosed neurodiversity. And I'm just like, constantly trying to think that his child mode, which is still developing, I mean, they say it stopped stopped developing child mode at five, but I don't really see that as true, but I just want his child mode to be like, there's a, there's a state called adapted child, which is the one I'm always i,n which is like the child reacts to something the adults do, and it's traumatising. And so the child is in constant fight or flight, really needs a lot of reassurance, a lot of love. And the other side of that, if you've had a good upbringing, or like an adequate upbringing is creative child, which is like free, playing, happy, secure, you know, like, sometimes I can go into that mode. And I'm just like, constantly just trying to get that child in creative, free child, you know, like not traumatised child because all the way through his life, in the thinking of transactional analysis, you revert to that child when you're in distress. So you want to if it's a solid, creative, happy, well built, resilient child, then it's okay. If it's not, yeah, he’ll struggle,
Lauren Fenton 37:32
It sounds like you're you're Yeah, you are. Parenting wonderfully, and creating that secure child based on I mean, you're just your own neurodiversity, and your understanding of your own neurodiversity, and your own childhood and how, how that's impacted you throughout your life. It's, yeah, it's quite an insight that's allowing you to be the brilliant parent to Frank that you clearly are.
I was thinking I had a conversation with my nine year old the other day, where she was asking me what autism was. She's neurotypical for want of a better term. And, I was describing autism to her. And I kept using the word differences. And she, she was like, but everybody has a different brain, but everybody's different. But everybody feels that's different, like, might have overplayed the differences, like points and the diversity points, but she's so aware of difference because she's got a sibling who is neurodiverse, and she sees tons of kids with different disabilities all the time.
Rina Teslica 38:39
That's why she's looking at it like that. I think if you weren't exposed, you would be like, people think differently to me, people experience the world differently. Ooh. And that's where that whole thing is from, I think. So Olivia is incredibly lucky that she's seen so much. And it's so yeah, it's just I guess.
Lauren Fenton 38:57
Yeah, too. But it's, yeah, it's just interesting, because I just think it's so my whole childhood was completely different. Like there was no, it was all it was all about kind of there’s the difference over there. And you know, it was Yeah, I’m sure I was socialised to believe all of these stereotypes that you described at the beginning around autism and ADHD. If I even knew what they were.
Bryony Kimmings 39:25
Yeah I mean, they do live in a different world now children. Like I think there is more of an acceptance, probably not from the parents, but from the school. You know, often there'll be there's a lot more awareness around things and a lot more sort of holistic mental health and neurodiverse practice in school, but I still
Lauren Fenton 39:47
We have a long way to go.
Bryony Kimmings 39:49
think, oh my God, such a long way to go the things people say. You know, the things people say to you or the things that people think and you just don't want to like go outside.
Lauren Fenton 40:04
I was going to ask as well has how has like, Frank, and you're kind of neurodiverse diagnoses or labels of autism and ADHD… How’s that impacted on your relationships with others or, you know, you talked about your, your family, your mother, and your own kind of reflections of the jigsaw of your life fitting together, has have other people kind of had that experience of oh, it makes sense now, or not, what's the reaction been?
Bryony Kimmings 40:38
I think it's a bit like when you have a poorly child, or you have a sick child or a disabled child, and people will either come towards you or they run away. And it's not always the same people you think it will be, you know, you think, Oh, they're a solid friend, and they're headed for the hills. And people that you were like, you might even I don't even really know you come and knock on your door with lasagna. And don't leave until you're okay, again. And I think it's the same with, with, particularly my diagnoses. I feel like you really quickly kind of weed out things that don't serve you, when you realise that you're neurodivergent. You know, you're like, clinging on to toxic friends or history's sake or duty, and then you think that doesn't serve me and that makes me ill, you know, so it's almost like it's sort of like quite a nice way of just getting out the scissors and being liked “bye!” Because actually, I mean, maybe it's also just age, you start to be like, I just don't have time, I don't have time for one sided friendships. I don't have time to hear this every time you know. So I think some people it's got me closer to and other people not at all.
But it's definitely brought new friends like I've, I've sought out ADHD women, I've sought out ADHD queers, I've sought out people who are neurodivergent, one to be role models for my children, and also one to be friends of mine. And it was a really nice moment a couple of times over the summer where Frank was with his dad and got this new house. And it's got a big garden, land and stuff. And it's quite a paradise to come to. And so a couple of times, I've just invited new neurodivergent female friends over and taken some low level mushrooms and just sort of splurged and sat and ate and lit the fire and talked about the world in how we see the world and how it's traumatised us or how we've we, you know, have helped ourselves and it's been a real, to be honest. It's probably the first time I've ever really experienced friendship. That sounds really bad. And my best friends listening will be like, f*ck you Bryony. And I’ll be f*ck you right back. But no, actually, a lot of my friends are neurodivergent. You know, the reason why we found one another now is realising is because we were all neurodivergent. But it's, it was very interesting. I taught a course the other day, and it happened to have like five or six ADHD women on it. And everyone was at the pub. And of course, we were the ones drinking a lot and smoking because that's sort of one of the things that seems to be a quite a common trait. And it was like being in a parallel universe. Because if you'd have watched it happening, you would have just seen chaos because there was five or six conversations going on at once. Like bits and bobs, and chatting across like it would have looked like chaos. But for me, it was like oscillating at the same temperature for once as everybody else. And you can have many conversations at once. You are following lots of different things. And sometimes that's awful. And sometimes it's really beautiful. And for the first time, I was like, oh my god, we're like next level listeners. Like we're just like that. And then I was like this is I found my little tribe and I've never really, I've always been at the edge. And I've purposefully always kept myself at the edge. And normally it'd be like, I've got gigs, so I can't come out alright. Like yeah, it's nice to meet you. But I just had a gig so I've got to go home, you know, like it was almost like I chose that to keep myself out of social situations. And often I'd say, oh, no, I've got a gig. I can't come but I wouldn't. You know, it wasn't that I just didn't want to go or I didn't want I couldn't I didn't want to make I didn't want to address why social anxiety wise I couldn't go overwhelm was I couldn't go and it was like, oh, yeah, this is what it feels like to be with your people. We don't want to leave, you don't want to leave. But with autism, I don't think it's it doesn't seem to be the same like I think of ADHD is very much It needs people it needs input it really low, low level dopamine. So you need excitement, you need to gather, you need to be doing like, it's like you need to be doing star jumps. As soon as you wake up in the morning, you need to get that dopamine into your brain. And autism seems to be quite solitary, quite self assured. I mean, I don't know about mental health with Frank. I think there will be mental health issues that just come from not feeling like you're part of something, or maybe not even that maybe feeling like you don't quite fit. Because the world isn't built for him. You know, he's living in a world that isn't designed for him, essentially. And he's having to do all the adaptations to make sure he's okay. Putting on all the armour to make sure he can handle it. Not at home. That's completely the opposite. But like, so I feel like, Yeah, I can't even remember the question, but I feel like I need to absorb people, and he needs to just be left autonomously alone.
Lauren Fenton 46:20
How do you do that? Then if you’re both.. is there just… is it having a large enough house in the country?
Bryony Kimmings 46:26
Luckily, for me, he's, I'm his person. Like, I mean, luckily, and unluckily, because he won't leave me alone.
Rina Teslica 46:36
But that’s good for you, because you need him.
Bryony Kimmings 46:38
Yeah, I mean, unless it's the repetitive stuff.
Rina Teslica 46:41
It's a constant.
Bryony Kimmings 46:42
It's a constant balance. Luckily, we bought, so we bought this new house, it's got a big fence around it. So it's like a sort of wild acre garden with like little zones and stuff, which we are turning into like a permaculture site, but it's got a fence all around it, not that Frank would ever, you know, he's not the sort of kid that would ever go beyond the fence anyway, but it's like, it's got lots of different zones. So I feel like more so now than when we lived in this flatt in Brighton with no garden, you know, it's just intense. And in a pandemic, now, it's like, more and more he'll go off. He likes to stare up at the trees a lot like it's one of his favourite things to do is to stand in the trees and to hear the noise and to watch all of the leaves moving. So, and I think more and more as he gets older, that will be you know, he'll find his way of self soothing or finding his own joy, because I think he looks to me quite often to be like, Is it okay? but more and more, I think you'll, you'll just be like, oh, there's Frank over there. enjoying that. Loving that moment.
Lauren Fenton 47:56
But yeah, I think you've described it to Rina and I prior to recording, as a neurodivergent utopia. What is your neurodivergent utopia that you’re creating?
Bryony Kimmings 48:09
Well, it's about it's about social model of disability, you know, like, it's about not only teaching Frank, that there's a medical model, which tells you that you're lacking or that you've got something different, that's difficult, or that you've got the kind of, yeah, you've got, you're not normal. Essentially, there's something wrong with you. And then there's a social model, which is the belief that the world is designed wrong. It's not designed for everybody. It's designed for people that are able bodied, or people that don't have neurodivergency or to have learning difficulties. And it's not the person that's wrong. It's the world. So if that's the case, which is what I'm trying to always tell Frank, like, if he doesn't like something's too loud, it's too noisy. It's too bright. I don't see it. That's not your fault. That's not designed for everybody. It's not right. It's not designed for everyone. So that means that if I've got this place, I can. It's mine, I only can do what I f*cking want. And I can turn it into the perfect place for us. You know, there's two non neurodivergent people. There's two neurodivergent people with very opposing neurodiversity. So the idea is that by talking about our needs and our wants and how we feel, we can create space for everyone to exist feeling like it's designed for them. So for example, the first thing we had to do was change Frank's bedroom. Even though we're probing we're probably going to probably knock this house down, it's like falling down and it needs to be like, either like huge amount of money spent on it or we're going to knock it down. But his room. It had to be changed. It was black, black and white beams, and it was all wonky. And it was Like, why is my room a slide and a prison is the first thing he said when he was in there, because it's like black and white bars and the floor was like, literally seven inches higher one end than the other. So of course, it's like, you know, back in the day they’d be like, “shut up and go in there”. You know, like, “that's your bedroom”. Like “you think yourself lucky, you've got a bedroom”, you know, that's the sort of attitude I would have had from my parents. So level the floor, make everything soft, double thick underlay, paint the ceiling white, like, make everything in there. I mean, parents do this with their disabled kids all the time. But it's like, recognising the fact that until you do that, until you make that room accessible, you can't be in it. Like it's not fair for him to live in a world where it's like, that's just how it is.
Sensory garden is happening this next summer, like smells and sounds for him are just like, I think I think when he's in nature, it must feel like it seems to feel like how I feel in nature when I've taken a few drops of mushroom oil, like which isn't, like I'm not talking about doing going on a bender, I'm not drinking alcohol, I'm just taking a slight amount of psilocybin that gives everything a really different sparkly, intense, very hyper-focused glow. And I think that that is what happens to him when he's in, I can see it like he walk outside and he could listen to a bird. And it's like, it's mainlining like euphoria into his body, his whole body vibrates. So like, I'm making him a garden, it's gonna have lots of bees, and it's gonna have bee hives, it'll smell insanely good, different areas will smell of different things, the sound of things, the height of things, just like what do you feel? And what do you need? I feel like I need to be in nature 80% of the time, then boy, you are going to be in nature 80% of the time, if I have to take the wall off the side of the house and make it glass you will be in nature, you know, like it's just, I, you know, I believe that he… not to spoil him not to make it like not, it's not that. It's what does the world look like, if you listen to what people need? You know, not us, they're like, Will and Leila they need. She needs a Lego room. It's like fine. Like, she just wants to do Legos. So and on her own. So she has a Lego room. Like it's small and it's she's small, and it's Legos and this is where I go to do my Lego
Rina Teslica 52:39
Makes sense. It's things that make you happy ultimately, things that just make you happy. Things that make you happy.
Lauren Fenton 52:46
I think we want to come and visit this utopia actually. It sounds glorious, honestly, like we're gonna have to descend at some point!
Bryony Kimmings 52:53
You can! I would really like to have a lot more land and a lot more. You know, like I would like to have like a place that people can come and rest and have you know, I don't I don't think it exists enough specifically. You know, respite something, but… I have a friend who does this thing called I can’t remember what it’s called It's so annoying. It's like he went into mental health hospitals and he asked the the patients to redesign the hospitals. It’s called something like “something asylum” not fame asylum, its something else. And you know, when they looked at what they needed, soft furnishings, soft cushions, different colours, less medical equipment. You know, the idea that just asking people what they need is, doesn't really happen. Like more land, so I can just like make little pods like this is the sensory deprivation pod. And this is the one where you get to hear only the nature around you like, you know, we're not I mean, we're not connected to the nature in the planet. Anyway, you know, as human beings. My partner has this really strong feeling that there's a nature deficit disorder as well as an attention deficit disorder, there's a hole in most people that needs filling in, they fill it
Rina Teslica 54:18
They need that grounding. Like socks off the ground can believe that for sure. I think what yeah, there's I feel like there's definitely I noticed it like in winter, because obviously I'm not going to like go to the heath. Then take my socks off and just like run around the heat. When it's like zero degrees. I can definitely feel the you I can feel it like the minute it starts going into autumn. And obviously the SAD it's just like a mix of everything. There's definitely, it's a shitty season until i gets warmer and then you can like you
Bryony Kimmings 55:02
Recently I've been looking at the pagan calendar because Frank's. One of Frank's obsessions is celebration, right? Like it got really bad at one point. It was like, What? What today is? What? What's the day? It's a national holiday, national waving day. It's national everyone wears yellow day, like it was like, whatever day it just had to be a day. But I started to get like, the feeling that a lot of that was kind of capitalism. He was like, What am I getting today? Okay, let's, let's do something else. Let's do something else. So I started to look at the pagan the pagan calendar, and you know, not to be too hippy about it, but like the way in which the seasons work and the celebrations of the seasons. This book was describing how the solstice is the beginning of the year, because it's the darkest day. Yeah, and everything after that gets lighter. And I liked that. Like, I was like, Oh, I can deal with that. It's like just a few more weeks until it's the end of the death and the the birth begins. And I was like, okay, good. So yeah, lots of trying to teach the kids about how to plug into what's around us like, self sufficiency. You know, the fact that soil has a natural serotonin in it, like, trying to plug ourselves back into nature, because we have the luxury of being in this land, and something about it is healing.
Lauren Fenton 56:24
I don't want to bring us down after such a positive discussion. But what have you found hardest to get right? In this? I guess creation of this neurodivergent utopia, or the way that you're parenting Frank? What's been the hardest thing for you to?
Bryony Kimmings 56:54
I think the hardest thing for me, not for him, for me is that learning about ADHD means that I've learned that we're very hyper sensitive to emotions. So perhaps the feelings that we're feeling are over, over, they're bigger than most people would feel. Right. So if you feel rejected, you feel like 50 times more rejected, right? That's like one of the symptoms of having ADHD. And it's definitely one of mine, particularly when I'm in a hormonal period of time. And knowing that, logically, I understand that I can hear it. But mental illness, and mental health is the same feeling it gives me this real headf*ck moment, which is like, I know the logic, but I'm also feeling the feeling like, there's no way that you can tell yourself, stop feeling that feeling, you know what I mean? So like, that feeling of, of trying your best not to be hurt by something or trying your best not to feel completely at the edge of something, while simultaneously kind of being like, it's okay to feel all these emotions, like I found it, I find it quite confusing. And I found it really difficult to for awhile, I was just trying to censor everything, which then you know, if you try and censor your emotions, you absorb them, it gives you illness inside So I think the hardest thing has been to have volcanic emotion and try not to, if it erupts to not spend the next week feeling just awful, you know awful you exploded or awful that you were short or awful that you couldn't deal with it that day. Like it's been really hard to forgive. It's been really hard to love myself enough. So that's been hard.
It's also hard trying to I think one of the hardest things with Frank is trying to understand what he needs like he's quite, he finds speaking difficult. So he's not nonverbal, but he's not. He doesn't speak very well. yet. So and also he's, he's autistic, he doesn't know what it's like not to be Autistic to sort of say what's going on in there. He's like, Well, what's always going on in here, you know, like, it's not, it's just not have consciousness enough to be able to say, well, I assume that you don't feel like this so I can describe to you kind of how it feels. So sometimes I just, I just want to like, climb inside his head and just be like, tell me I don't understand, like, I cannot understand, I don't and I feel so stuck and I can see him trying to explain to me and I'm just I don't understand and that's very painful, painful because you can see it's painful for him, you know? And the worst is to see your children in pain, isn't it? But yeah, so it's difficult sometimes sort of waving across the two planets that we're on and being like, I'm here, but I can't help right now. And he's like, I'm over here. And I don't understand why you can't just come. I think another difficult thing was probably accepting. When I realised that my I, Myself was neurodivergent, accepting that I had been very, very ableist towards my own child, you know that I’d ‘othered’ him. I'd been like, yeah, he's disabled. Yeah, he's over here. And he's like, Yeah, we're trying our best to just like, get onto his planet, but I can't do it. And like, that's because he's disabled, you know, like, and that thing of like, oh, actually, I've been doing that. I until I realised that that had happened to me. I wasn't able to sort of look at him with perhaps the empathy I can now which is like, oh my god, like, I've been othering you since you were ill. Like, since you were born. How does that? How has that affect you? Like? Yes, it's a really difficult thing to admit, you know, because as a parent of a disabled kid, you want to be like, Look, man, I'm the f**king biggest disabled champion there is out there. No one can f**king mess with me. Like, I'm like, I'm so down with all this stuff. So then to sort of realise, oh, wow, I've been applying the medical model of disability to my own son. It's like.
Lauren Fenton 1:01:34
and the guilt that comes with that, I guess. But, yeah. But it's, but then that's because you've lived in a society that's told you that your entire life.. So it's not Yeah, it's, it's the fact that you're aware of it now, that you have that empathy is going to serve Frank so well, in the long term.
Bryony Kimmings 1:01:55
Have you ever feel like that feeling of like, why doesn't everybody else just get with the programme?
Lauren Fenton 1:02:03
All, every f**king day!
Bryony Kimmings 1:02:05
You just want to shake people and just be like, like, this isn't a podcast for people that already know this stuff. This is a podcast for people that have just had no idea what it's like to be, you know, to be dealing with these things, either as a parent oras a child, you know? So you don't f**king know do you, until it happens to you?
Rina Teslica 1:02:30
Which leads us on really nicely to your f**king normal. What is your f**king normal?
Bryony Kimmings 1:02:38
Oh okay, so I decided that my f**king normal was so my f**king normal is playing the dog game for the 7000th time. While simultaneously doing star jumps and trying not to drink wine.
Rina Teslica 1:02:57
You know, I can picture that so clearly in my mind. Yeah, the visuals.
Lauren Fenton 1:03:02
I feel like I could incorporate wine into the dog game!
Bryony Kimmings 1:03:08
Yeah but I’m trying not to. Oh, no. Well, I think I think that we've got this thing in our house called the dopamine menu where you take your like, I feel low dopamine, instead of being like, what the hell's wrong with me? It's like thinking of it as a diabetes thing. It's like, I don't have enough sugar in my system. I have low dopamine. What are the things that I can do to build up my dopamine? And when my dopamine is at a good level, I can play the dog game till the cows come home. Do you know what I mean? So it's like if I do star jumps, instead of drinking wine, I can play the dog game for the 7,000th time. And that's my f**king normal.
Lauren Fenton 1:03:43
Brilliant brilliant. Absolutely brilliant. Thank you so much. It's been fun,
Rina Teslica 1:03:51
Though, so interesting. You are incredible. Thank you for being so open and honest. Interesting and fabulous.
Lauren Fenton 1:04:02
Thank you so much for listening to the f**king normal podcast. We love making this podcast. Yes, we do. We are part of a much bigger team. Almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.
Rina Teslica 1:04:23
So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fkingnormalpodcast.com That's f k ing normal podcast . com. You can join us on Facebook and on Instagram at fkingnormal_podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 1:04:47
So thanks so much for listening all the way to the end. We'll see you next time.
Rina Teslica 1:04:48
Byeeee "kissing noise"
