S2 E2: PDA and low demand parenting: Nicole Bateman chats with Nicola Reekie

In episode 2 of Season 2 of "Conversations with a SEND Mum," host Nicole Bateman engages in a thought-provoking conversation with Nicola Reekie, owner of The PDA Space. Together, they delve into the concept of low demand parenting, discuss Pathological Demand Avoidance (PDA), and explore adaptations in education settings for children with PDA.

Episode Highlights:

• Low Demand Parenting: Nicola introduces the concept of low demand parenting, emphasizing the importance of reducing demands and pressure on children with PDA to support their well-being and reduce anxiety. They discuss practical strategies and approaches for implementing low demand parenting techniques in daily life.
• Understanding PDA: Nicole and Nicola explore Pathological Demand Avoidance (PDA). They discuss common misconceptions of PDA and the challenges faced by individuals with this profile in educational settings.
• Adaptations in Education Settings: The conversation shifts to adaptations and accommodations for children with PDA in education settings. Nicola shares insights into creating supportive environments that cater to the unique needs of neurodivergent learners, promoting inclusion, understanding, and success.
• PDA Summit: Nicola highlights the upcoming PDA Summit from April 26th to 29th 2024, providing an exciting opportunity for learning and collaboration within the PDA community. She invites listeners to participate in this valuable event focused on PDA awareness, education, and support https://www.thepdaspace.com/summit-2024-speakers 

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Check out our sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

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Hello, welcome to Conversations with the Send Mom, with me as your host, Nicole Bateman. A sponsored by the Super Sensory Squad. Today we have Nicola from the PDA space, so very welcome to Conversations with the Send Mom podcast. Thank you so much, Nicole, for inviting me. Yes, I'm Nicola from the PDA space and I'm really excited to be in here to come and share our experience. What I then grew because of what I needed years ago. Yeah. And I love that. And lots of our guests, including myself and yourself, you know, we, we have gone through our personal experiences and we have used that to try and support kids like our kids and other kids too. So yeah, first of all, can you tell me a little bit about you and your journey as mum? So definitely. I am a mom to two boys. My eldest is 16, my youngest is 11. I'm also neurodivergent. I was diagnosed in my twenties as dyslexic and dyspraxic, and through my own boys' journey I've been screened and I'm all to A DHD. And when my. 150 mile move. We were back in a very different scenario and It took a long time to get through the process of seeing clinicians, and at that time it was paediatrics, who kept saying, no, he's not autistic. And I share quite frequently, and it's on my website, the, the chance conversation with a friend when she mentioned and uttered the three letters PDA. I was so overwhelmed. and exhausted. This sounds crazy, but I actually typed those letters into my telephone because I knew I'd forget. And ever since numbing about pathological demand avoidance, there's often the light bulb is referred to it because parents get the light bulb moment. And You know, when my girlfriend mentioned it to me, it was before Christmas. I can remember really clearly the day I looked it up. It was between Christmas and New Year and some things that had happened that day. I really started to realize there was something else going on and thought, right, I'll look it up. I read some information. There's a very simple screening online. I shared it with my husband and he was like, they've written. About our son, and I'll never forget the goosebumps of just like, oh my gosh This is it. Everybody else has kept saying no Hashtag he's fine. No He's not autistic to the point that it was, you know, there was some parent blame etc. Yeah. Wow, that's That's great that that from a chance conversation, then you looked up and, and I think a lot of people listening will will resonate with that light bulb moment of like, Oh, yeah, like after especially lots of us have had people telling us, Oh, no, it's not that they're fine, all of these things. So So yeah, that's great that you had that. What kind of common misconceptions? Because, especially around PDA, what are some of those common misconceptions that you have encountered throughout the years? Yeah, pathological demand avoidance often gets misconstrued either depending on the young person, if they're in freeze masking mode, any other service. So if it's education after school clubs, whatever it might be, we'll say, there's not a problem. And you as a parent will be faced a lot of challenges. the challenge to get them to school, to go anywhere, to do anything, you know, because obviously, you know, depending on the way you're, you're wording things or your language and the way you are, that automatic, it's seen as a demand. And when I say the way it's seen, because obviously as time goes on and in our situation, I know it's not the same for everybody. My eldest. is able to, to do things. And I suppose we've really changed our lifestyle. You know, we're very low demand household, which is also about our expectation and our way of living. But for families, when we, before we knew just every day was such a challenge, even though we did quite gentle parenting there was a lot of explosions. There were a lot of times where I'd say it felt like there was a bit of a circus, so there wasn't necessarily naughty behaviour. But the social construct of saying things like, oh my, you know, my arm doesn't work if to go and do something, or my legs aren't working today if let's go out for a walk. Or, I often would feel like there was this like, running around like a whirlwind of destruction, not like breaking stuff, but you'd be constantly needing to try and perhaps sort that out. I was never, I didn't get anywhere to meet people. on time would normally be at least an hour late, which would add to my stress because I didn't know why. Yes. I didn't know how to factor that in. Whereas now I would really change the way I would factor that in. If I knew what I know now, when my boys were say four, five, six, seven, I would only put one thing in a day in the holidays. I would have multiple rest days in between that. I would if I was planning to meet somebody, I would never meet them before 11 and add in at least 20 minutes to half an hour extra buffeting time. Yeah. And the biggest and most important is that. The boys wanted to do it. I think the understanding that the importance of collaboration with our young people, which takes time. And it's a journey because we're taught that from a very young age that, you know, kids just need to do what we want. But actually I think we've got a bit of an uprising that our young people are changing the narrative and that their voices need to be heard. Yeah, definitely. Definitely. And that's really, it's a really helpful kind of practical things to help with low demand, you know, build a low demand environment. So I'm sure that would be super helpful for some people listening. Now, what, what I'd love to know is how then. that low demand parenting, that environment, how can that transfer to other things like school education settings? How have you found that, working in reality? I mean, that's very, very personal for every family. Cause every young person's different cause we're all different. And what our needs are very different. I know that when my, Aldous was younger, you know, having mental health days, noticing, really being mindful of seeing when that stress bucket was really filling up and choosing to say, okay, I think it's time to have a day off. We're in a very fortunate position that he's in a very small independent school, so he's only in with 15, 18 other students. I think also being able to explain to educators that it's a can't, not a won't. And regarding work is Understanding that very black and white sense of why that work needs to be done. I think the biggest thing for anybody when first learning about pathological demand avoidance is the adult being flexible and I talk a lot about the, the inner work that I, you know, my biggest support is for families, but the inner work of being flexible around our mindset. And I remember in primary, for example, a teacher needing some English to be written. And my son, Absolutely. And he still does. Adores football. So I was like, right, well, why can't he do about history of football? And every piece of English was based on football. There was a particular teacher who, who really struggled with that. Yeah. And I said, but why? I think the other thing, if it's a family member listening and having conversations with professionals. is asking the professional how would they feel if they were told to write something that they had no interest in and we're more likely as humans to do well if it's something we're interested in and so finding a way of linking that common interest to to sort of broach And to support that. I think also it's very difficult that when our young people are in freeze mode, through the limbic system, and you're very around the sensory side, I'm starting to use that terminology rather than masking, because that is scientific. The limbic system, and if anybody wants to, we have e books, e books. As part of the PDA space portal is understanding that when the anxiety is such, it's not that somebody's not wanting to, but they're, you know, they're in survival mechanism. And I, I really love the whole phrase, you know, can't not wait. Yeah. And I think that can be really hard for professionals and families with that mind, again, it's that mindset shift. And for me at the beginning, having sticky notes, notes on my phone, reminding myself it's not, they're not doing it on purpose. It's not deliberate. Like, Oh, I know what I'm going to trip mom and dad up, or I am going to deliberately annoy Fred, Harry or John. They are struggling, and I think we expect so much of young people to be able to say, you know, I, you know, also in all of these other programs, oh, you know, we let, we, we ask them how they feel. Please find me an adult that when they're stressed, overwhelmed and at full capacity, they can say to you, yeah, I'm feeling really stressed because of. Yeah, I, I absolutely agree. The, the dysregulation of the, understanding the nervous system, I think is, is so important. And I love, I love researching and I love looking at the brain. It stemmed from, my son having epilepsy and just trying to understand, in his temporal lobe, which houses the limbic system. So for him, the emotions and all of those things, all interlinked, and he often goes into freeze mode. That's his dysregulation response Sometimes it is fight, but at school, for example, it's freeze. I think if we all, all of us as parents, as educators, as, everywhere that we worked in the workplace, even if we all had a basic understanding of the nervous system and our responses when we're dysregulated. I think it would be so helpful in general life, like, I'm definitely a massive advocate as well of that, looking at it in that way, for sure. I think we'd all have a lot more compassion to each other and gentleness, because we'll be like, coming in a way from a trauma informed response of, Okay, direct capacity. I shared recently that in one of the newsletters of how I'd been asked, To do something that I've done, I've done so many times on my website, but I just had a blank and, you know, I was able to ask, but a young person may not be able to. And if they've got, you know, PDA that, that avoidance, they may not be able to word it. And I, I really think the, the understanding. The extreme anxiety and as you said that which then links into understanding the limbic system, which then understanding the nervous system, allows families or professionals, whoever is struggling, to realize That the person, it, it, you know, it isn't a calm, they just, it's not a word, they calm because they're trying, they're just, the brain's jammed. Yeah. You know, it's like when the computer system just, you're trying to put something in and it gets, it's free. Too many tabs. Too many tabs. Open. And I think it's a real shame that at the moment we seem to be seeing within education, I mean, I'm based in Wales and I've got a London accent and our system is different from England, but this whole actually more extreme narrative, which is actually causing a lot of stress and anxiety in Lots of young people. However, for the PDAs, it must be setting off their stress hormones surreally because they must feel so trapped, you know, thinking about uniforms that, you know, my son quite likes actually, the heavy blazer because it's actually sensory. Yeah, gives that pre perceptive. Yeah, my other child wouldn't be able to cope with any of it. This extreme of, you know, that perfection of uniform, or the timetable, or, you know, being able to attend by a time, the lack of flexibility. I know one of my boys would go to the toilet. Now they didn't know why, and I didn't know for a very long time. And again, that link, when we're anxious, the hormones that, you know, get delivered, and I think we can all remember that interview or that big day, and then with, like, going, Oh no, I need the lube. But actually, It's those hormones being sent to us, but also it can be that moment for a young person to just escape, ground themselves, or maybe it's because they want to cry and they're not going to do it. But this extreme at the moment, some of our young people aren't even being allowed to go to the bathroom. No, yeah, that's, I always, as a teacher, I always let them go to the toilet, even if it wasn't technically the rules, but I was like, they gotta go. It's, you know, it's what they need. So yeah, no, there's definitely a lot of that, that narrative around. So just to kind of finish off. What is something that, you know, if there's a parent listening who thinks that maybe their child is a PDA er or, you know, how can, how can you give something to help encourage them? What's, what tips and things like that can you give them? It is a pathway. Be kind and gentle to yourself. Changing our language, so instead of saying, for example, we've got to leave by this time. Not at that moment, very often at other times say we need to leave by 8. 30. I'm wondering how I can support you. My son missed the school bus. Years ago, and I didn't get angry and didn't say anything, took him and actually we had a good chat. And later on that day or the next day, I said, how, what should we do? So that situation, or what can you do so that situation doesn't happen again? He said, I'll just set some alarms. And when we allow our young people to find the solutions. Then it's more likely to work because that's quite novel. And that's part of the plan B that Dr. Ross Green talks about a lot. Very often our kids will go, I don't know. And you may just give some ideas, but it's really coming from a very different narrative. Personally texting works really well in our house because I'm processing time. Is longer and it's a more indirect way. Is it, I do feel it's easier as they've got older, but say like before Christmas, the advent calendar, I took loads of photos and I just sent them on WhatsApp to one of my boys and said, which ones do you fancy? And it's looking at how to be creative. And I'm being kind to yourself that just because those ideas worked yesterday, they might not work today or tomorrow. And that's okay. And I love this saying, you only know what you know at the time. And I'm, I think the biggest thing we can do is be gentle and compassionate with ourselves, which then rolls on to our children. Cause we're then like, okay. And then obviously the biggest thing is to say, come and find me. I host a free summit with last year we had over 30 speakers, so 30 webinars over a long weekend. This year it's going to start Friday, the 26th of April to the 28th of April. So a bit of a shameless plug here, but you can come and listen for free every day. You will receive at least eight webinars that you can listen to. You know, I've already recorded with Dr. Ross Green around plan B, kids do well if they can or kids do well, they want to do well for a ridiculous price. You know, I'm sure we'll have over 30 webinars. We're still in the process of getting it all together, but it's only 49 pounds to have all of those webinars for a year. And I'm quite, people say to me, why do you do it for a year? You know, is it a financial thing? It's not because as you and I both know, the language is changing at such a high speed at the moment. What's, what's appropriate now. The language that's been used has been, is really changing and I think there's nothing worse than having some information out in the world that is outdated. Yeah. Yeah, I know. So that's, that's, that would be so useful and people could catch it for free or then you know. You know, get those, those recordings for very cheap price. So the best place to connect with you then, if people want to connect is Facebook, Instagram, everywhere. I'm more on Facebook than I am Instagram, but the website I host I have a subscription model. So I host monthly workshops and webinars as well for really, really I think reasonable price of only 15 pounds a month. So yeah, I mean, the PDA space is on Facebook. I send a newsletter every Sunday with things like the eBooks, which people, you know, I'm using myself. when I have meetings with professionals because they remind me of the right language to use, you know, cause we can all funny. My brain can go offline, you know, and being reminded, Oh yes, it's proprioception that I'm talking about. So these are, I mean, I love these that Helen from autistic realms is, Collaborating with me. So yeah, I'd probably say jump on the newsletter because the information that we send out every Sunday morning is always jam packed. Excellent. And yeah, so I'm sure there'll be lots of people that, you connected with you will be great and you'll be successful. Be able to help them in many different ways. So thank you so much for coming on and chatting with me. And definitely connect with the PDA space to, to get more info from Nicola as well. Thank you so much for inviting me and thank you for everything you're doing as well. Ah, thank you. So if you want to connect further in Nicola, go to the PDA space will see you next week with another guest and have a lovely week.