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Finding support networks as a PDA parent
2 Playsin 1 day
In this episode we’re chatting with Lindsay and Stacie, from the PDA Devon support group, both of whom are parents of a PDAer. It can be really isolating as a PDA parent, especially when the people around you don’t understand what’s going on or how to offer support. In this episode we explore why it’s so vital to build a likeminded community and support network, and how to connect when awareness about PDA is still growing.
You can our Facebook support groups here or explore our directory of support.
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Transcript
Introduction to PDA Life Podcast
00:00:02
Speaker
Welcome to PDA Life, the podcast brought to you by the PDA Society, where we'll be exploring the highs and lows of pathological demand avoidance. I'm Rachel. And I'm Sarah, and we're your hosts.
00:00:14
Speaker
As the UK's only PDA charity, we're bringing together PDAers, carers, clinicians and researchers to answer the questions which matter to you most.
Importance of Parental Support for PDA
00:00:24
Speaker
Hi everybody and welcome to this podcast. I'm Sarah from the PDA Society and in this session we're going to be looking at the importance of support when parenting a PDA child, young person or supporting a PDA adult. I'm delighted to be joined by both Lindsay and Stacey from support group PDA Devon. Welcome ladies.
00:00:46
Speaker
Hi, good morning for having us. You're
Lindsay's Journey and Motivation
00:00:49
Speaker
more than welcome. Really excited to hear what you've got to say. So perhaps if I could ask you both to introduce yourselves first of all. or Lindsay, perhaps if we start with you.
00:00:58
Speaker
Yes, so I'm Lindsay. I'm one of the co-founders of PDA Devon. um I have a young son who's seven who has PDA. So obviously hoping to support people who are going through the same challenges that we've been through. with our son, um you know, within school and in general. um Yeah, so lots there think about.
00:01:21
Speaker
Thank you Stacey?
Stacey's Parenting Story
00:01:23
Speaker
So I'm Stacey. I've got three boys, nine and under. My nine-year-old is my PDA-er. And yet we live in Devon and just trying to navigate the eldest son having additional needs and the other two not.
00:01:39
Speaker
So that's what my home life looks like at the moment. Wow. I'll take my hat off to both of you because I've got two boys and two was very challenging in terms of energy and everything else. so So, yeah, that's great. We really appreciate you taking the time to record this and support other families as
Early Support Experiences
00:01:58
Speaker
well. So perhaps if I start off with an opening question, you know, before you set up the support group, what was parenting a PDA child like for both of you in terms of feeling either supported or unsupported? it
00:02:12
Speaker
Well, I would say for me, I think I've been incredibly lucky because I do have a really wonderful support system around me. um My family is brilliant and my friends are brilliant, but actually... there's that's you can only go so far with that because if those people are not living the life that you are living 24-7, as much as they love you and want to support you, they can't, they just can't because they don't get it. um And for me, it was actually one of my friends that said, you know, I can't do anything else. You need to find people that are going through the same thing. so i think...
00:02:54
Speaker
for me, it was the kindness of my friends um that made me reach out and go, do you know what, I think you're probably right, I need to find some more support. Yeah, and that must have been quite a difficult message to hear, but, you know, as things have turned out, what a great piece of advice it was. So thank you, Stacey. Lindsay.
00:03:14
Speaker
Yeah, so I'm quite different to Stacey, I think, knowing Stacey fairly well. She's very social, whereas and I would say maybe not so much. I have really lovely friends, but I can be a bit of a loner. um So for me, I think I would say it was incredibly lonely and isolating. I didn't know anyone else who was in the same position as me at that time.
00:03:33
Speaker
And it very much felt that idea of like, it was just me that was going through it. And I wasn't very good at school either in reaching out, obviously, for obvious reasons, we were, you know, on a reduced timetable. So I wasn't seeing parents, but also that sort of shame at the playground at the school gates was
Overcoming Isolation
00:03:50
Speaker
really hard. So I really withdrew into myself. And i hugely struggled and I think I just became really insular for me um and it was only when you know I sort of got a friend um introduced me to Stacey that I think that really opened my world up and I think I had that recognition that to survive this I probably really needed to learn to open up and that's a skill I've really had to work on but I think
00:04:17
Speaker
maybe wouldn't go as far to say has saved me, but I think it certainly made a huge difference to my life. For sure, just learning to open up and be more open about my journey, you know, with the right people that can support you.
00:04:30
Speaker
Absolutely. Because it is, you know, supporting and parenting a PDA is so, so different to traditional parenting, um you know, and with that, you know, often it flies in the face of societal norms and traditional parenting. um And, you know, people just don't understand why you're letting them get away with things or why you don't just put boundaries in place. It can be really, really hard. So you mentioned that you first connected e each other, big through you were introduced through a mutual friend. What was it that made you realise there was this gap in support locally? Because you you are quite in a rural area anyway and in in Devon.
00:05:06
Speaker
Yeah, I think for me, it was there this real moment that I always come back to. um And my third child had just been born. um And I was, you know, he was a few weeks old. We'd just had my son's diagnosis. And this word PDA had been said to me. I'd never heard of it before, ever. And I'm manically Googling in the bedroom, p d a PDA Devon, PDA Exeter, all of these things and nothing is coming up. And I'm repeatedly bringing back, being brought back to the PDA Society website.
00:05:41
Speaker
And at that time, ah that was my Bible. And I read everything, everything on there. But for me, that was only so far that website could take me because I need people. I'm i'm i'm a hugger.
00:05:54
Speaker
I need to speak to people in person. um And I just couldn't find any anything that was specifically for PDA. So I i went along myself to a local SENN walk and talk. um But I very quickly realized, you know, SENN is incredibly broad.
Creating Support Networks
00:06:13
Speaker
And someone who has a SENN child and someone who has a SENN child are living in two different universes. um So for me, it wasn't until I found someone specifically that said,
00:06:25
Speaker
oh, my daughter has got a PDA profile. Have you heard of it? I was like, ah, okay. And then that's when kind of really organically. And then again, similar to Lindsay, i was keeping a lot of the things that were happening at home. I was keeping within my very close circle. um I wasn't talking about it.
00:06:46
Speaker
I was embarrassed. I had shame. i I guess I didn't really know how to explain it myself. So it wasn't until I started talking to people outside of my circle, it which is how we all ended up linking up because I started to use the words PDA.
00:07:00
Speaker
um And then someone else said, oh, my friend, her son, you know, and that's just from speaking and being honest about what was happening at home um and making that step to try and reach out is how it we all sort of organically, for want of a better word, ended up meeting.
00:07:18
Speaker
But it is very brave to take that initial step, you know, because there's you know so much personal disclosure that has to come with with PDA, really, if you're going to get the right support. So, you know, I can imagine it must have been really, really difficult and quite a challenge to take that initial first step and reach out. Thank you, Stacey. Lindsay, how how was
Impact of Support Groups
00:07:36
Speaker
it things for you? Yeah, so just listening to Stacey there, I think I never realised how much I needed the help until I found it.
00:07:45
Speaker
I think I would have just carried on as I was. It was only the fact, like say, a mutual friend. And I had this amazing message from Stacey and I remember it to you this day. um And then I met her and that's changed my world. I know that sounds maybe bit cringy, but it it definitely has. I think I would have just carried on with my head down and just trying to survive because I was in crisis mode and I was very much living day by day, getting through. There was no sort of joy to it. I was really struggling to find any positivity at that time.
00:08:19
Speaker
and so I didn't even know I needed it. I didn't even look for it, that help. I mean, thank God in a way that my friend did, you know, put me and Stacey together. And then I met these amazing ladies. um But otherwise, just, I didn't even know I needed it until I found it and how much I needed it until I found it.
00:08:38
Speaker
Yeah. So I guess that there's a really great message in that, that even if you are coping or you think you're coping, but things are a little bit tough, you know, it can get so much better. So, you know, taking that initial step is so important. um Would either of you be willing to share a specific moment where the peer support... genuinely helped you get through a really difficult period with your child?
00:09:01
Speaker
and It's hard to explain one thing, isn't it? Because there's so many. I mean, I can say certainly, I think me and Stacey really bonded within our sort of um the PDA Devon ladies, as I would call them, because we've both got boys. So the rest um of the ladies had girls. Um, it's something me and Stacey really bonded over and we found a lot of similar similarities between the behaviors, which were quite outward and physical. So the amount of times I think me and Stacey have run each other in tears, um, or have had a really awful time. I mean, I remember, and just off the top of my head, there was one time I just had a really rough time with the score. I think I was very much in the depths of phone calls all the time. And I'd had a particularly bad phone call from the school and just sometimes I felt the way they were sort of communicating with me was really difficult. It was all very dark and
00:09:56
Speaker
you know, there seemed to be a lot of frustration with, you know, the physical side there, which is always difficult for me to hear as a parent anyway. and if you're made to feel worse, and I can remember crying, I think I said in that message, I sent Stacey a voice note, now I'm thinking that, and I was literally crying. And I was like, I know I need to, in these moments, learn to reach out to people. So I'm doing it now and I need your help. And you know what, that girl, she was straight by my house, i think she brought me a bottle of wine and I will never forget that.
00:10:26
Speaker
Like the amount of times I know now if something really bad is happening, i would have felt so ashamed that I probably wouldn't have reached out you know, the people around me. are You know, I have an amazing family, but I know they wouldn't have got it. Like I think me and Stacey know, we don't try and explain it away or say, well, what can you do now? Because sometimes you don't need that. Sometimes you just need that person to listen and be like,
00:10:48
Speaker
gosh, that really sucks. Like, that's a really tough day. Take what you need, do what you need. You just need someone to listen and be with you in that moment and not necessarily try and fix. And I think, A lot of people around you do that, which is lovely and I understand that, but sometimes there isn't fixing those moments. They really suck and it's really hard. It's just someone to hold your hand.
00:11:09
Speaker
And also, you know, fixing or helping is so difficult difficult with PDA because, you know, if if's you know your friend's got neurotypical child and they're struggling... you can take the child, you know, to the park for an hour and give them some respite. Whereas, you know, for PDA is going somewhere with a stranger. you know, that is a nightmare. You know, you're their trusted, safe person. So why would I want to go with somebody else? So, yeah, Stacey, anything and that you'd like to add to that?
00:11:36
Speaker
I think that the difference between sort of meeting Lindsay and the friends that I've already got is that to be able to say to someone, to be able to say to a friend,
00:11:48
Speaker
I am controlled 24 seven, your friend will say, oh God, that must be so tough. But then to meet Lindsay and say, i am controlled 24 seven, you just have that moment where you're like, I get it. And to know that they actually do guess it um it's just a different kind of experience because you can say things and talk about things that perhaps you don't want to tell your closest friends and family because you don't want to upset them because they love you and they love your child and sometimes things get really really hard and as much as you want to be open and honest with the people around you there's some things you just don't want them to know and it's really lovely to have this
00:12:34
Speaker
lovely circle of friends. We've also got an incredibly supportive WhatsApp community. um To just be able to have these people to quickly fire off a message and say, you know, it's taken me three hours to leave the house, but we've got to the park for five minutes and I'm so happy. To suddenly have a flurry of messages to go, yes, well done, we get it. Like, so proud of you.
00:12:58
Speaker
That's really, it's just really lovely to just know you have this little team of people that are living the same life day to day as you and and you're not alone because when you first start off in your Senn experience, whether that is from birth or whether that's, you know, later in life when your children are five or six, um it can feel like you are the only person that this is happening to. and And there's just no way that anyone else will be living the same life as you are. But, you know, they are. They absolutely are. And they're doing... wonderful things and you know sharing what's going on at home can really help
00:13:40
Speaker
you know you in all sorts of sharing the wins as well isn't it like sharing those small moments that to other people like i so remember clearly someone put on the website the other day daughter went to school for the day and she hadn't been for a long time and we knew her story and all she had to say is she went to school and the messages that came through i feel so proud of like it was so lovely to see everyone was so supportive and they knew what a big dip that you could say that to someone else and they'd be like and You know, but we knew what big deal it was. And everyone got involved and they were all sending messages of like congratulations.
Offering Practical Advice and Resources
00:14:16
Speaker
And that was just so lovely to see.
00:14:18
Speaker
So definitely, you know, the emotional support is there. I mean, that is just superb. But from a practical perspective as well, I'm guessing, you know, you've got that local knowledge. So if somebody, I don't know, wants to know about EHC plans, you know, you've got that local knowledge. People can, of course, email into the support service, the PDA support service. But having that local knowledge must be so, so helpful. And um what a great shortcut to take a recommendation from somebody who knows, because I think a lot of parents really struggle trying to find an occupational therapist, a speech and language therapist, you know, it' somebody who gets PDA. And sometimes you can, you know, have two or three failed attempts and just to be able to get that that knowledge locally at they at the click of a WhatsApp or, you know, a quick pickup of a phone call must be amazing as well.
00:15:10
Speaker
I think that's where we need to pay huge amounts of respect and shout out to Helen. So Helen is the other girl who runs PDA Devon with us. um And Helen is the local knowledge queen. There is nothing that woman doesn't know. And yeah, if I had met her at the start of my journey, oh the money I would have paid her for her level of knowledge yeah um is outrageous. And exactly as you've just said, like the WhatsApp group, like the Facebook page, people can just fire off these messages for free. And everyone, i think there's something so lovely about the PDA society group
00:15:45
Speaker
community and everyone's so eager to help each other because there's not a huge amount of you know help and resources out there for families that are dealing with PDA you know we always get pushed down the you know autism route and things like that but those living with PDA know that you know it's not quite the same and we need a more tailored approach so to have those people with local knowledge like you say to say I've met this person I've used this OT we went here for an assessment they were fantastic or this enabler well you know all sorts of things so yeah that in itself has been yeah fantastic resource for all of us yeah so time saving and money saving by the sounds of it yeah yeah so did you expect the group to become what it has or has it evolved in a way that you just didn't anticipate
00:16:35
Speaker
its I don't know if we ever had any kind of expectation of what it was going to be because it just started off five mums going for coffee.
Growth of the Support Community
00:16:46
Speaker
And then after while, crying in a car park, crying in car parks, yeah, crying on each other's shoulders. And then after a while, other people caught wind. They were like, can I come? Can I come? And it just very naturally spread. But I know personally for me, i I've had to give up work in order to be my son's carer. um And for someone who's worked their whole life, to not have that kind of purpose throughout your day was really, really difficult um for me. So it's really saved me in lots of ways because it it gives me something to do. And it's something that i didn't even know I was passionate about. um
00:17:24
Speaker
And yeah i don't yeah, I don't know. You might answer different, Lindsay, but I don't think we had any kind of expectation of how things would go. no we never... It very much was, like you say, us coming together as people that were going through a similar thing and supporting each other. But I think once we came together, realised the strength of that and we realised how much it gave to us. And we also realised that there was nothing else there. So we really wanted to be able to offer it to other people and let them feel the same that we felt when we got together. And we were like, oh, you get it. Like, I can say that and you're not going to gasp in horror or fall off your chair you know everyone's in the same position and we can share and like you say sometimes it's lovely like Stacey says the whatsapp is very much someone can put in you know I'm looking for an OT or I'm looking for this and get a flurry of messages everyone wants to help and there's so much information out there and knowledge from people who have been through it or are going through it but sometimes you just want to sit
00:18:24
Speaker
and you just wanna tell them about what's rubbish and about what's what's great and have a cry or whatever that might look like for that day. And it's just a safe space where we can offer to people that they can come. And I don't think we ever expected it would get to this point, but it also shows how much there is a need for it. There's a need for that low-income support where you can actually go. you know, COVID had such an impact and people weren't getting together. But the trouble is a lot of these parents are isolated. They're at home. you know and they're struggling to maybe get out the house or they don't feel that they want to spend that small time that they have you know doing other things. They want to be going to these things and being able to share and have a cry or scream or shout, whatever that looks like. um
00:19:11
Speaker
So I feel incredibly proud actually sitting here today of how big it has got. And I think we're all just really passionate about helping other people and being there for them. And I think, if anything, that's a good start, I guess. And hopefully.
00:19:27
Speaker
Absolutely. yeah And how big is the group now just out of interest? Well, it depends because I feel like now we've got lots of little pockets of groups going on. It's sort of expanded in all different directions um because now we're doing things like trying to bring the dads together. trying to bring the grandparents together. So we've just had a grandparent afternoon tea provided a space where we could bring our parents and our grandparents to meet each other and discuss what was going on.
00:19:56
Speaker
um We also do events for siblings because lots of families have got siblings at home that are struggling. So we try and do event days that, you know, the the PDA children are not invited and we just go along with our neurotypical children. um And then we also do other events where no children are invited and it's only adults and because that's also something that we've really, really want to raise awareness of.
The Role of Self-Care for PDA Parents
00:20:22
Speaker
if it's okay to to leave your children, it's okay to do something for you. um not everybody has that luxury. Some people physically cannot leave their children. They do not have anyone to to look after them. And we understand that, but some people can, and there's a huge amount of guilt on a SEND parent for ever taking time out for yourself, ever. um Yeah, and I think that leads beautifully into the next question, which is, you know, why do you think it's so important for PDA parents to remember that they're still their own person and not just a carer?
00:20:58
Speaker
I think, um well, for me, i think it took me a minute to just be something other than his mum, because I was so consumed by what was going on at home. um And if I was even to consider like going off and doing something for me, the guilt on leaving him the guilt on leaving his siblings, on leaving my husband.
00:21:22
Speaker
um It would be so overwhelming. I just wouldn't go because i just it's not fair. It's not fair that the four of them suffer just for me to go and have a coffee with a friend. It's not worth it.
00:21:33
Speaker
But actually now I totally disagree with that. It is completely worth it. And I think everybody can recognize that because if I go and meet a friend for a coffee or, you know, a walk or anything, I come back a better version of myself. Therefore, all four of them will get a better version of mummy and wife. um So for me, it's like medicine. It's like therapy.
00:22:00
Speaker
You know, it sounds crazy, doesn't it? Like ah ah just a walk with a friend for an hour, but the impact on what that can do for you mentally, for your mental health, I think is just so so important and should be screamed from the rooftops it's okay to take time out for you and and actually it's a necessity because these children rely so massively heavily on our nervous systems to regulate theirs they know in a heartbeat if you are struggling so if you're stressed and you need time out and you're reaching burnout that that immediately impacts on them so
00:22:36
Speaker
by taking time out, you're doing it for them, not just for you. And it's, you know. It's that secondary gain. There's ah there's a gain for everybody. Yeah, yeah. And I remember listening to a podcast the other day, actually, and it was talking about self-care. um And they used a mnemonic M-E-D-S, meds, and it stood for meditation.
00:22:56
Speaker
e was exercise, D was diet, and S was sleep. um And I know it's easier said than done, but, you know, if you can pay attention to those meds, um It can be you know so beneficial to your long term health and well-being, but also, as you've articulated, the knock on effects that that has in a positive way for everybody else in the family.
00:23:17
Speaker
Yeah, I mean, Stacey, was just fascinated by what Stacey was saying, because there's so many good things to say there. I know Stacey's very good at doing that. And she's very good at being social. Like I said, I've almost had to learn that skill because I recognize I needed to be more open and social to get through what I was going through. um and that was really hard because I'm not necessarily an open book.
00:23:39
Speaker
type type of person so i've really had to work at that and and I think I am a true believer that people are sent into your life to teach you something or you know they come and go and sometimes you learn something from someone and yeah And I really feel like Stacey has taught me that meeting her, she's taught me the value of looking after yourself and, you know, doing that by being with other people and how powerful that can be. And that is something I will take forever now. I truly know that. You're going to make me
00:24:17
Speaker
Stop. Cry, we want to see a cry. Oh, I can't cry every time. Oh, I truly believe in that. And I just think, you know, I look back at myself a couple of years ago, a few years ago now, and I started this journey, and probably how much pain I was in and how small I was making my world and how small I was
Personal Growth Through Peer Support
00:24:36
Speaker
making myself. And I look at the change in myself and that's huge. And I truly think that's by meeting these ladies, every single one of them, they've all brought something to me. um And that's the joy of opening up and, you know, meeting new people because you never know what they might bring to your life. And I truly feel you can learn from others. But yeah, that's, um and it can be in different ways. You know, for me, I exercise quite a lot. I have animals and it's a huge thing for me to get out in the country and walk and just be moving my body. So I think it's just finding for you what works and what that looks like.
00:25:09
Speaker
You know, we are really aware for some people, they can't even leave the house. um And it's working around that, you know, I often exercise in the mornings before I take my son to school and he's there screaming at me and shouting me and throwing things at me. And I love that.
00:25:24
Speaker
I'd rather have things thrown at my head while I'm trying to exercise, but that's the reality, isn't it? But I know I need to do stuff for myself so that I could be in a better place mentally, like Stacey says, because that then benefits everyone.
00:25:36
Speaker
ultimately but it's not an easy place to get to it takes some work and it's almost like skill you have to learn because it feels so uncomfortable to do that when your child needs you so much um so i do really recognize it but it is such a powerful thing to be able to do it for yourself and your child yeah i think that's sort of parental instinct you know it goes against every fiber of your being to leave a distressed child or to take time out for yourself so um So we are almost at time. So i will leave one final question with you. um If you could both comment, it would be lovely. If a parent listening feels completely alone right now, what message would you want them to take from your story and from the group that you've built?
00:26:20
Speaker
Just never underestimate the power of peer support. I just think it's even if you... Join a WhatsApp group, join a Facebook page, just start following local local people, local get togethers on social media. um Just reach out and message people. If you're not in a position to be able to go to these groups and and go out for the day and do all of these things, sometimes just a small step, you can be really surprised about how far that can lead you. um And it just takes that first, you know, initial reach out um and wonderful things can happen. and And don't just do it for you, do it for your children and do it for your husbands and your partners and your family, because you're never not going to benefit from reaching out. So.
00:27:09
Speaker
Yeah, I just want to scream. Really powerful. Thank you, Stacey. Lindsay, the final word with yourself. Yeah, I think what I would say is be brave. Just if you can take that leap, that small leap of faith. And good things will come. Like Stacey says, there's so many benefits to it for yourself, but people around you. And you never know what might happen and the people that you might meet and what they'll bring to your lives. And, you know, that could be a really powerful thing that can bring you so much. um And through that, you have the realization that you need it.
00:27:42
Speaker
Like I said, I didn't know I needed it until I found it. So just take that step, take it today, whether like Stacey says it's a small thing, joining a WhatsApp group, whatever it is. and You know, the times I've met someone in a supermarket or as soon as I started speaking to people, more people are saying, oh yeah, I think my son has that or my daughter definitely has that. You know, you just start meeting people. Once you start opening up and talking and communicating, you start meeting people. that do actually get you like your next door neighbor, you know, or someone who lives down the street, you never know the people around you and what they can bring to your life. So keep your mind open and be prepared to just be brave just for a small moment because it will pay off for sure.
00:28:25
Speaker
Wow. And you're all amazing. Everyone's amazing. Everyone who's getting through every day. You're awesome. You're amazing. And we see you and come to a PDA Devon event because we'd love to see you if you're local.
00:28:37
Speaker
Yeah, brilliant. Well, some really, really powerful messaging in there, Lindsay and Stacey. Thank you both so much. um You know, I've taken half an hour out of your day already when you could have been taking care of yourselves. But hopefully this has been quite therapeutic for you as well. And it's just been lovely to hear your stories. And, you know, if I was in that situation, i would be in no doubt now. The first thing I would be doing is getting on the Internet and go and find in my local group. So thank you both. You're absolutely inspirational. And it's been wonderful talking to you.
00:29:07
Speaker
Thank you so much for having us. Thanks, Sarah. Thank you.