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Unlearning Authority: Parenting a PDA Child
1.2k Plays2 months ago
In this episode, PDA Society CEO Ed speaks with Suzanne McManus, an editorial leader and creative professional, who joins the podcast to share her personal experience as the parent of a PDA child.
Suzanne reflects on the steep learning curve of parenting when traditional approaches don’t fit, and how she had to unlearn familiar ideas about authority, control and compliance. She discusses the shift from managing behaviour to understanding anxiety and autonomy, and how connection, trust and humour have become the foundations of her parenting.
Through warmth and honesty, Suzanne offers reassurance to parents who may be feeling isolated or unsure, highlighting the importance of community and self-compassion along the way.
Key Themes
- Parenting a PDA child through understanding and flexibility
- Letting go of traditional ideas about authority and control
- Replacing behaviour management with empathy and curiosity
- Building trust, humour and connection in family life
- Finding reassurance and community as a PDA parent
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, will be available through our Training Hub. You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
Recommended
Transcript
Introduction to the PDA Society Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So whether you're a PDA yourself, a family member, friend, or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
00:00:38
Speaker
Hello there. Welcome to the PDA Society podcast, where we share stories, insights, and strategies that help shine a light on the lived experiences of PDAs and the people who love and support
Meet Suzanne McManus
00:00:48
Speaker
them. My name's Ed Archer. I am CEO at PDA Society and I'm really pleased to be joined today by Suzanne McManus, who's an editorial leader, creative professional with a long career in media.
00:01:00
Speaker
She's developed, commissioned and and nurtured a wide range of content from entertainment formats to major live events. But today, She is joining us not in that context, but as herself, as the parent of a PDA. Susan wanted me to be really clear before we started that she doesn't speak for all parents and that every parent's experience is different. But that hopefully hearing from a parent will be helpful and comforting for any parents feeling alone and isolated right now. um So I'm really excited about this conversation. I always find chatting with Susan really ah fun.
00:01:36
Speaker
um but also really informative and I'm hoping that that will be the same for you. and Suzanne, do you want to start by kind of introducing yourself and telling us a little bit about your family?
Understanding PDA in the Family
00:01:46
Speaker
Yeah, you Ed, thank you very much for that lovely introduction. Ditto, I always find it fun speaking to you. and i tend to go off on all kinds of tangents, so feel free to pull me back. As we said, I'm Suzanne, I'm married to Stu, we have two children are both neurodivergent.
00:02:03
Speaker
My husband is neurodivergent. We've learned this on the way, like like most people, we didn't we didn't come to this in any way fully formed. um And then i suppose about a year, a couple of years ago, we we learned as I'm sure you know you're all familiar and and and certainly something that you've talked about, itd is the that light bulb moment. We had our light bulb moment where we realised that PDA was the thing, was the um was just the part of the character of um my brilliant elder son.
00:02:41
Speaker
um And also, i think it's probably important to say, because again, this is something I've learned, as my two children who are now at eight and a half and 10, as they get older and are their own people and their own characters.
00:02:54
Speaker
I think it's important to say that whilst I don't speak for all parents, as you say, and I don't speak for PDA adults or young people, I don't speak for my children. And I'm more ah more mindful about their privacy and how I balance that as well. And so, you know, I suppose I, oh God, I'll start getting all, I just want to you know, if Frankie and Joseph someday, if you, if you,
00:03:20
Speaker
hear me or see this to say it's really important for me to know that you understand that everything about you is everything that your dad and I love about you and we wouldn't change a thing and I'm sharing about how much I love being your mum Yeah.
Balancing Privacy and Parenting Insights
00:03:40
Speaker
though Well, that's, and you know, what that's beautiful and it's really, really important. um You've seen we've got a new website and one of the things we talked about in the website is that we wanted it to be quite human and we wanted there to be pictures on it. But we didn't want there to end up being pictures of children because we didn't want...
00:03:57
Speaker
children to be outed without their consent and there's that whole thing about you get everybody gets to choose how they describe themselves so everybody gets to choose how they define themselves and uh yeah we'll be really respectful of that in this but I also think it's a really helpful thing for other parents to hear that thing about my experience as a parent is valid uh and it's not a complete descriptor of of my child who will have their own kind of uh perception themselves uh and that's Yeah, and it's easy my take on our family and, you know, like everybody's take on anything. It changes over time. it depends on, you know, how you woke up feeling this morning. And also, you know, everybody's got their own sort of narrative. So, you know, this is how my take is today. Yeah.
Parenting PDA vs. Neurotypical Children
00:04:47
Speaker
I wonder if you could say a little bit about what you think is the difference between between being the parent of a PDA-er and being the parent of ah that kind of binary neurotypical average average child that we know doesn't exist, every child is an individual, but kind of what is different about your life than perhaps the lives of your peers who don't have a neurodivergent child?
00:05:14
Speaker
I think the biggest, the key takeaway, I suppose, that I've learned um is that we have to unlearn. So not only do we have to unpack um what everybody else's perception of having a neurodivergent child looks like, um and and that is a very stereotypical thing,
00:05:37
Speaker
perception and i I usually just say autistic rather than autistic and PDA and and dyspraxic and ADHD which is you know all things that we have in our family mix um and people's perception of autistic is very much still as we all know that that's defined by you know routine and you know frankly not that far away from Rain Man 40 ago um and And PDA, I think, is just a completely, totally different. than i so it was just done and some I don't know because trying to explain it, there isn't one succinct sentence. What I can think of is like everything you think you unlearn step away and come back from a point of view of if you are looking at an individual person, a human being at its basest level,
00:06:28
Speaker
you are thinking, you know, what do I need to know about this person? How do I need to communicate with this person? And essentially, that's what it it is. we As a parent, we are conditioned to be the authority.
00:06:42
Speaker
We've all been brought up. We've all been brought it up with like not just one paradigm of parenting, but a kind of version of the same paradigm parenting, which is I'm the elder. I'm the authority. I'm going to get you to the point where you're an adult and still always kind of be that person in the dynamic. And one thing that I thought recently that struck me is that whilst There's a kind of circle of change. You know, some things change one another.
Generational Influences on Parenting Styles
00:07:06
Speaker
So we've all been through this technological revolution where all of that has kind of, you know, accelerated in the last 20, 30 years. Parenting is one of those things that like we're we're actually attached to several years before our time. And by that, I mean, i was brought up by people who were born in the thirtyties and 40s.
00:07:26
Speaker
yes They were brought up by people but people who were born at the turn of the 20th century. Got that right? Yeah, 20th century. And they were brought up by people who were born in the 1870s and 1880s. So we are all one generation behind when it comes to what we've learned to be as parents. And we have learned that because we've been taught that. We've learned that because that's our lived experience. So we were brought up to understand that this is what it means to be a child and to be parented in that way. um And so obviously a lot of things have changed since I was growing up in the seventies and eighties and, um but we're still a generation behind. So to get back to that thing about what do I wish people knew is that, you know,
00:08:10
Speaker
For me, as a parent with a child, a young person, I've had to learn to not see them as a child in the same way as any parent sees a child, but to see them as an individual and to think about how, if I was in that position, how I would feel if I was, for example, put into an environment and told to sit still for eight hours and that I could not get up and get myself a drink or I couldn't get up and go to the loo whenever I wanted, for example.
00:08:36
Speaker
If I was sanctioned because I you know looked the wrong way or because I didn't happen to have you know a prescribed way of dressing, how would I feel?
00:08:48
Speaker
And that's probably so like one of the simplest ways to think about we're looking at living with, nurturing and um and bringing up an individual who's almost like There's no point in thinking about them as a blank canvas. They're not a blank canvas.
00:09:09
Speaker
No. Now, um I mean, i and as you know, my my child's not PDA-er, but I can remember being pretty amazed, despite the fact that I had, you know, I spent my whole work life working with children and particularly working with neurodivergent children and young people. But I was still surprised in that first couple of weeks when I brought home a baby, how much even as a baby, there was already a personality there. Like that was that was a real shocker for me because I had thought that what was within my control was if I created the right environment and I put into play all of the kind of ah supportive techniques and philosophies and all of those things that I had kind of spent my whole working life learning that I would be able to kind of just build.
00:09:58
Speaker
and It sounds so egotistical, but I just don't think I'd fully understood that what you get is a person and that person exists and you you adapt around that person or that person adapts around you. um But trying to force a child to fit you, it's any child, is actually quite unhappable. And I think that's true for all parents. Yes.
00:10:19
Speaker
And then... if If your child is is PDA, then it's like, you know, you put that on a rocket.
Social Hierarchies and PDA Response
00:10:25
Speaker
Yes. Totally. um And it's funny, you just reminded me about those so those first few days. So when my PDA, the week he turned five,
00:10:36
Speaker
week um that George Floyd was murdered. So we were everybody's very conscious of that event and the impact it was having on the world. And so he turned five and i I found myself writing this few words down and it wasn't a poem, but it was just like kind of what I thought. and i And it it was called was called My Boy with the Brown Eyes because he's got massive chocolate brown eyes. um And the first line was, you know,
00:11:07
Speaker
at four days old, the he was like the midwife looked at him and said, oh, you're one of those. Because he refused to be swaddled. You she wanted to kind of wrap him up. And it's like, he was like, ah. He was like,
00:11:22
Speaker
not having this, this didn't work for me. And then we went i went on to like, you know, at six weeks you were, you know, on your first protest march on, yeah at two, um he started in a essentially a nursery, which is kind of just part-time play group. um And I remember him stumping around, like while all the other kids were like, shall we go and have story time? Should we sit on the carpet? He was just stumping around the first day. go, no, no, no, no. like And the,
00:11:51
Speaker
I so suppose the thought process was, um you know what, maybe in times like this, we we're going to need people like you. We're going to need people who don't just sit with the status quo, um you know, who were like very overused word, but, you know, who who are disruptors and who are able to see injustice or see something that, you know, doesn't work and just go, why do why are we doing it this way?
00:12:19
Speaker
Yeah. I mean, for anybody who's listening who they're kind of dipping their toe into the PDA world, it's worth saying that um PDA is a people who have a really extreme kind of anxiety-based response to all demands. But that's not just being told what to do. So what Suzanne's talking about here and in one of ah in a number of ways, actually, but in in a particular way is that that we may or may not realise that hierarchies and power dynamics are are demands.
00:12:50
Speaker
And they're essentially social conventions that aren't necessarily sensible or logical and paying attention to them are is a demand that a lot of PDAs find really really, really stressful. And so one of the things that if you kind of read back over kind of Phil Christie's work and the stuff that's in his book with Ruth Fidlow, you'll see one of the kind of telltale signs they'll say is, okay, these are people who might want to kind of talk to a teacher as though they're a fellow adult rather than as though they're a pupil. and um
00:13:22
Speaker
And that's something that some adults find very challenging. But that isn't intended as a challenge. And it's actually a really interesting thing to engage with in terms of thinking about, why do I think I should have power over this other unique human being? um And I wonder if that is conditioning us as a species, and whether there is something, you know,
00:13:53
Speaker
inherent in us that sort of feels like, you know, in all aspects of life where there's there are hierarchies and that could be about, you know, following celebrities on social media, looking up to certain people because they're famous or or or um or or just, you know,
00:14:11
Speaker
respecting the authority of a police officer or a judge or whatever, you know. i thought I wonder whether we are conditioned to do that and whether there is... and but ah But basically, I think the point is, i think it's essential as a species that we do have those system breakers.
00:14:30
Speaker
And, you know, I've heard it said before, it's difficult to be the person that raises... somebody who's going to be the person to say no um but it's this kind of essential and it's essential that like i suppose what i was getting at with having that thoughts around joseph when he was turning five was that um not only do we need does our society need people who are going to stand up to injustice man and that is one thing that that
00:15:07
Speaker
that sort of inability, for want of a better word, to comply automatically with authority without questioning, without question.
00:15:18
Speaker
Does, the you know, that that's essentially what, But it is when people stand up to authority. and And, you know, I've talked in the past about working a lot with comedians and and the need to be able to punch up as a comedian, particularly in satire.
00:15:37
Speaker
You have to be able to call things out. yeah And I've referenced in the past, you know, going back to Charlie Chaplin and looking at the great dictator and saying like how, but I mean, i' I am convinced he was neurodivergent.
00:15:52
Speaker
but for lots of reasons, but I think, you know, the fact that, you know, the power of satire to be able to take on a character like ah in that case, it was Hitler that and and and go, I see you.
00:16:06
Speaker
I see you as, you know, and i ah I see you for who you are. i see you as the, you know, as the emperor without the clothes and um I'm going to call it out and I'm going to call it out in my way, which makes people laugh. And that's what I see so much with comedians and with neurodiversity ah amongst comedians, but particularly with my child. And I've seen that from the beginning that, you know, this, this joy he has in making me laugh and in me making people laugh. And if you combine that, hopefully with, you know, the, the positives around not being able to tolerate, tolerate demands from authority. Yeah.
00:16:50
Speaker
Yeah. but that's actually a very powerful combination. It really,
Adapting Parenting Strategies for PDA
00:16:54
Speaker
really is. And it's something that comes up, like when we talk about how PDA described themselves, but also how people who know PDA is described. And one of the things that comes up time time again is like a real kind of sense of justice and a commitment to justice, which I think is really important, but also a great sense of humor. And I think, um yeah, it's by it's always really important to kind of think about, um,
00:17:18
Speaker
Parents of PDAs talk a lot of the time about getting judged by other people around how they parent, particularly parents of children who are PDA is actually, you know, adult PDA is depending upon kind of the life that you choose. There is likely to be less demand. I mean, life is inherently demanding, don't get me wrong, but there are likely to be less demands upon you on a day to day basis, less expectations, more abilities to make choice. um And parents of PDAs often talk about how you know other parents, maybe their parents, the grandparents of those children, other people in their life, want them to kind of restrict
00:17:58
Speaker
their child um in ways that are perhaps unhelpful. And of course, there are things that we do have to as adults tell our children that they must do, you must not run into a road, we need to be able to stop that we need to be able to stop children from, um from drinking bleach, we need to be able to, you know, all of those sorts of things, of course, we have to keep our children safe. But there are a huge number of rules out there that aren't about that. And one of the things I always find really interesting is when you ask a parent whether or not you want them to be raising a compliant adult.
00:18:28
Speaker
don't think anybody wants to raise a compliant adults. I think people say they don't. um yeah But yeah, that's that's true. And I think, you know, we've had a lot more, particularly from women, a lot more acknowledgement of many of us have been brought up as people pleasers. Mm-hmm.
00:18:47
Speaker
And particular and ah also a lot of autistic women sort of feel that need, a part of masking as well. um And i'm I'm very, very conscious that, um you know, do I want to raise people pleasers? Do I want, i want people, i want to raise people who are respectful of other people, but not necessarily to the point that they um will be compliant, as you say. And in terms of that sort of interaction from other parents, I'm trying to frame it as, because it's really hard not to lose, ah to lose everything around, not to be the one that ends up shouting, my children are autistic, you know, when somebody looking from me to them, to back to me again with an eye an eyebrow arch going, really, you allow this? um
00:19:40
Speaker
I really try not to do that. I often fail. So what I try to think about is in all honesty, would, had I not had the, had the parenting experience, which I have had, would I think this myself? And most of the time, the answer is yes, I would think that myself. I would look at me before I had kids and go, really?
00:20:04
Speaker
Like, you know, you're going to let them get away with this. um um And, and, And I think, again, this is something all parents would say. All parents were like, we were brilliant at being parents before we had kids.
00:20:15
Speaker
And obviously with PDA, it's a whole different level because the the reality is you have to treat your PDA child as an equal. You have to do that because the alternative is that you will...
00:20:27
Speaker
for want of a better word, damage them because they it will trigger them going into fight or flight. Now, do I have time to explain that to everybody who looks at me with a judgmental look? Of course I don't. Do I expect them to understand? Of course I don't. I would not have understood myself. So all I can do, and this is really, really hard, and as particularly, as I say, having been raised as a people pleaser, all I can do is try to shut that out and try to prepare as much as possible and in advance to minimise situations like that. And so, you know, one of the things I can do at this point, my PDA doesn't necessarily want to wear a sunflower lanyard all
Advocacy and Education on Hidden Disabilities
00:21:10
Speaker
the time. um So I wear one and I have a little tag that says, you know, my children have a hidden disability or something.
00:21:17
Speaker
So occasionally um i will, people are getting more knowledgeable about what the sunflower lanyard means. um And that even if it's just me feeling that there is less judgment because I'm it's like putting on a piece of armor. Now, lots of people will feel m that, again, i am sort of.
00:21:40
Speaker
I'm sort of betraying my children's privacy by kind of announcing to the world that my children have a hidden disability. but But people are watching, people are, you're out in the world and people are seeing your children. and I would rather people understood my children, that I'm advocating for my children because they need um more accommodations.
00:22:04
Speaker
Yeah. and My children are bad. They're mean, they're, you know, naughty because they absolutely are not. They're responding to a sensory overload or they're responding to choice paralysis. or they're responding to having been triggered by, you know, a dog or, ah ah you know, a dog barking at them or something. So it's like, yeah these are the choices. And then, so, and I do find that most people are quite understanding of that, but yeah, unfortunately there just, there isn't, I don't have the time to, to
00:22:38
Speaker
beg everybody to understand educate everybody yeah so in your house of equals uh where you've got you've got two adults and two children living in a house together all trying to get your needs met within the same space could you kind of give us an example or like a bit of an idea about like so a day's like or what a morning's like when you're kind of when everybody's juggling one another's needs in that way you know Ed?
00:23:04
Speaker
I wish I could say in our house of equals, I wish I could agree with you, but we're only like, we're only, we're still at the tip of the iceberg of beginning to not only understand, I think we we understand we get it. So again, it's a bit like the, you know, learning to drive. I'm still really bad at that. But, you know, people talk about how you consciously learn something and you're really aware of it and you're really trying to kind of do it. But, you know, You know, if anything, we're at that point. We're yeah not at the point that where it's become, um you know, part of what we do without thinking. we so We constantly have to unlearn. Also, you know, we're two parents and i'm also ah you know I'm very mindful of how, you know, that's an advantage for us and how many single parent families are bringing us.
00:23:55
Speaker
um not just PDA children, but, you know, any child and how much more difficult that is as a single parent. And I have an incredible amount of respect for people who are doing it on their own.
00:24:09
Speaker
But as as two parents, you've got the difficulty that one's you're never on the same page. It's just not normal for you to be on the same page all the time. So I find that in our situation, I'm the one that's doing all the kind of reading and the learning.
00:24:24
Speaker
And when I say reading or learning, I'm not reading a book. I haven't read a book in 10 years since my eldest was born. I'm talking about scrolling on my phone at night, scrolling the PDA Society Facebook group or my my cohort of PDA parents Facebook group group or just just all this stuff that comes up um around understanding neurodiversity. And of course, now all that the... um you know, the powers that be in social media know that I'm interested in in this stuff. So it's like, targeted can't escape but anyway, that's where I'm learning. I think it's important to say that I try to learn from neurodivergent adults because I'm really,
00:25:01
Speaker
respectful that like um i so I suspect in the stuff that I've read from neurodivergent adults that because of this generational difference, as I mentioned earlier, in how people were parented or are parented, m a lot of neurodivergent adults are living with the trauma of having been brought up without the understanding, A, that they may have even not known themselves that they were neurodivergent.
00:25:28
Speaker
but be that, you know, the world just did not accommodate them. And we've got the classic situation of, you know, square pegs, round holes. And I, and anecdotally, and what I read and hear from neurodivergent adults, I think that that damage that has damaged them as individuals. And it certainly has damaged their relationship with the parents as a generalization.
00:25:48
Speaker
And one of my first things that I knew for sure was I'm going to let that happen. Mm hmm. So I've kind of forgotten what the question was. The question was actually about what a typical day might look like.
Impact of Burnout and Work-Life Balance
00:26:03
Speaker
That Like, you know, we don't get this right whatsoever.
00:26:06
Speaker
i think to some extent, our life sort of changed a bit last September when our PDA-er stopped going to school and and really kind of without any doubt entered burnout. So it's kind of like looking at life before burnout and life after burnout. So as life is at the moment after burnout, um we've got Joseph is at home all the time.
00:26:31
Speaker
um And ah Frankie was still going to school until this week because it's school holidays now this week. and So Frankie is still going to the mainstream that both children were attending, which incidentally is just the most lovely inclusive school as mainstreams can be. um And Joseph is at home.
00:26:49
Speaker
One of us can work and one of us can't work at the moment. And that is a reality for So many PDA families, also families of neurodivergent children and and um any you know children with any disability.
00:27:08
Speaker
It's really difficult for both parents to work, as you know. In our case, I'm working part-time now, and that's the only way I can make it work. And Stu, my husband, is being the stay-at-home parent, um and that's because he got made redundant about 15 months ago at the same time I was offered a different role, which I could do part time. And um so we are like ships in the night at the moment.
00:27:34
Speaker
and My husband being neurodivergent himself needs to get out his way of, of of um and he you know, he won't mind me saying this, but, you know, as being somebody living with ADHD, he just needs to like run that motor off every day. And I try to accommodate that within my working day. So try to work from home as much as possible. um So we've got the situation that we've got one child here all the time. We've got one person effectively imprisoned at home all the time. um and then we've got the other doing the school run or doing all those things like, you know, so we got like one in school, one out of school. Worst of both worlds in that we can't take a holiday during term time. We'd go on holiday. We, um ah one of us has to constantly accommodate, you know, from school. So if he needs to go on a school trip, one of us has to go with him because he needs one-to-one support. and So we are like, you know, just juggling all this. and You know, there was an instance, yeah,
00:28:34
Speaker
For example, a couple of weeks ago where I needed to be at work Wednesday morning, really I've got a really accommodating manager and he he said to me from the beginning, you do whatever it takes to make this work. And I cannot tell you how big a difference that makes. um really understanding really trusting um but the one morning i need to be at work is a wednesday morning when we have a broader team meeting and um you know without betraying any confidences i hope this is okay to say because i think it's a really positive endorsement um the i work at the bbc and the director general was due to be at this meeting so i wanted to be there and then it turned out that you know frankie had a school trip and one of us has to go on that so it also happened to be carers week
00:29:18
Speaker
So I emailed briefly the director general to say, I'm not gonna be at this meeting. And because it's carers week, I'm shamelessly telling you this is the reason why. And ah and I was like, I just thought I'm gonna harness that opportunity to speak up as a parent carer.
00:29:37
Speaker
um and And I got a reply, a personal reply basically saying, I have so much respect for the parent carers in the BBC. I don't know how you do what you do. I really look forward to hearing more about it. And I just thought, I mean, you know, that's a real...
00:29:54
Speaker
indicator of the difference that it makes for parents like us they don't need to know all the ins and outs they just need to trust us when when you know there's some things that we might need to to switch on or accommodate that was a tangent sorry but i think that's but it's a really useful one because i think it's always worth saying there'll be parents listening to this who are despairing of being able to work again and um And what you've just described is you are actually an incredibly competent, incredibly respected person doing a very cool job, actually, who has somebody
00:30:33
Speaker
ah is within a place where people are prepared to make the flexibilities that allow you to do that. Almost everyone in the PDA society team is a carer. we We were just talking before we started recording. We had a comedy gig last night, it's one of our fundraisers, and people's jaws dropped when I, after having explained how much our charity did, said, you know, we're operating with the equivalent of less than 10 FTE employees.
00:30:59
Speaker
And the reason that we can do such an amazing job is because we pretty much exclusively employ PDAs and carers. And there are some incredibly competent people out there. where employers haven't yet worked out that if they provide that flexibility, they get incredibly talented people prepared to really go to bat for their job. And I think, um so I do think it's always worth saying, if you're an employer listening to this, really think about what you can do for the carers in your employer and the carers that aren't yet in your employee, because, um
00:31:35
Speaker
These people who know how to prioritize and how to get things done in very little time. um And that lived experience of basically having to turn your world upside down, looking at it through look at everything through a different lens is...
00:31:50
Speaker
is is innovation, you know. yes it And we're used to using every spare minute that we can. We're used to working as part of a team to just to just to keep our heads above water.
00:32:02
Speaker
And there are loads of times where, you know, I've thought in the past, I wish somebody would just sit me down and say, exactly as you've just done, tell me what your day is like, because people think they please they don't. And you know that's probably never going to happen. And that's totally fine, because why should they? They, you know, everybody's got their own stuff to be dealing with. um But I think...
00:32:26
Speaker
just having that trust you know from from an employer is is absolutely priceless. And it's the only way that you know we can, I think,
Maintaining Relationships Under Stress
00:32:37
Speaker
balance. And and and it the other thing about you know how, what our day looks like is, again, going back to the thing about being in a relationship and having two parents, sometimes it's really hard to be mindful of what how each other, the other person is feeling in that moment.
00:32:55
Speaker
And two to think that, you know, somebody once said to me, there's really brilliant thing about, you know, difficulties in relationships and arguments and whatever, when you're stressed.
00:33:08
Speaker
And she said, it's like having um two pigeons fighting over a crust. It's kind of like, you know, the other and the one pigeon, each pigeon thinks the other one's got it. And in fact, you know, nobody's got the crust.
00:33:21
Speaker
and and And that's the thing. It's like, we don't have a crust. You know, you don't have it. I don't have it. We're both dealing with not having a crust. And yeah, I think that's that's really important in terms of, you know, it's hard to remember to be kind to each other whilst we're kind of directing all our kindness at our young people.
00:33:45
Speaker
that Yes. um And then I suppose the other thing about typical days is, is um is there a typical day? There's probably not one that's going to be exactly the same. There's a lot of walking on eggshells.
00:33:59
Speaker
but Sometimes things go, geez, I didn't think that was going to go as well as it did. and Yeah. um I'm wondering if I'm just, what's the best way to do this? So one of the things that I wanted us to to chat about, because it's something that I really like, really experienced whenever we have a conversation is that, um it's not easy being the parent of a PDA and it's not like the juggling that you're talking about and that fighting over the cross that is, you know, the time for like, for all of the self care that we keep hearing that we need and all of that kind of stuff. That's, that's really hard. One of the things I always notice about you is your ability to access joy,
00:34:47
Speaker
ah in your parenting and in your family. And so there were two things that I was hoping that we'd be able to kind of just kind of dive into. And one of them is just generally how you do that, how you maintain your sense of humour, how you continue to be someone who's, you know, really giving of that kind of joy and high energy stuff.
00:35:06
Speaker
Also, i would love it if you could share with with people listening how you planned your beautiful, joyous wedding to be really inclusive of your two children's really different needs.
00:35:18
Speaker
Because I think that's something that lots of families really struggle with is how can I celebrate if my kids needs for a celebration are different from mine? Yeah.
00:35:30
Speaker
and Oh, wow. Okay. So first part of that. Thank you. I don't know. To be honest, I don't know. I don't really recognize that. I don't feel like I'm always the one that's sort of bringing joy to the situation. i suppose, like, you know, so many of us would say is like, you've got no choice but to see the positive and see the, you know, the funny side sometimes. And there is, there is a lot of joy. There's my children are hilarious. They will
00:35:58
Speaker
You know, my PDA in particular will bring joy to people's lives as an adult. I have no doubt I've known it from the beginning. I sat with him the other day and um I talked about how I thought he would make a really good director. or And I thought that he would, you know, I've always told told him about, like, I think he's he's very funny and he loves to
Encouragement and Community Support
00:36:23
Speaker
make me laugh. And i so I talked to him about maybe people that I've worked with that are very funny funny and I say to him, and I see that in you.
00:36:32
Speaker
And he looked at me and he just turned and gave me the most massive hug around my waist. We were both sitting on the floor and he leaned into me and said, thank you for saying that. And, you know, but the truth is,
00:36:47
Speaker
He is a very, very joyful child when he's happy and regulated when his needs are met. He's funny and bright and hilarious and way, way, way ahead of his years.
00:36:59
Speaker
So when I've got that energy around me, you know,
00:37:06
Speaker
Of course, I'm going to feel like, you know, like laughing. and um And, you know, to be fair, because I don't want so want other their parents to think, well, why, what's wrong with me? I don't feel like laughing an awful lot of the time. I've just come through a period really really in the last week or two where I've probably as close to burnout as I have been and and um and in your reference there to you know the whole thing that we're told about self-care that just drives me wild because you know when you're sat opposite a GP or a health professional and they give you the spiel about how important self-care is
00:37:51
Speaker
And then he I remember in the past just thinking, oh, great, that's another thing for me to feel guilty about. I'm not taking enough care of myself because the whole can't pour from an empty cup thing. Well, you know what? Help me fill the cup because I can't do it on my own. I can't do it when we're all burned out. I am operating from an from an empty cup. And sometimes I think that's totally valid to to to confirm that. and And I know we probably will talk about the importance of finding your people as other parents. And that for me, yeah one of the biggest, biggest, you know, lifesavers. So last week, I didn't have to go to this Wednesday morning meeting. It was cancelled. So I got to do the thing that I never get to do, which I really love, which is go to a carer's yoga session, which is run locally at Yoga Home. And and it's free and it's open and it's so loving. And it's just for, you know, parent carers,
00:38:43
Speaker
as part of the charitable outreach. And two of my at local community of PDA mums friends came and we went for a coffee afterwards.
00:38:54
Speaker
And I was able to open up about you know how I was feeling at that moment, which wasn't very positive. and um And I got a text later that evening from from my friend who's a PDA mum and she went, I'm really worried that you're in burnout.
00:39:08
Speaker
um And that impacted me in a couple of ways. The first one being, thank you so much for picking up on that. I didn't pick up on it Nobody else. And, you know, one thing that we hear a lot of is, you know, I feel seen. i feel like somebody has acknowledged what I didn't even, nobody else was seeing.
00:39:27
Speaker
And she said, um, She said, just to let you know, um she said, I can come and sit with your children while you guys go and get a break. We haven't left the house together for almost a year as a couple.
00:39:41
Speaker
I mean, I mean, like gone outside the front door. Yeah. And she said, you know, as PDA parents, we realized she said, I know that that will have an impact on my children.
00:39:55
Speaker
But remember the cost. What do they call it? The cost benefit. Yeah. One thing is like, is the cost to you and your relationship in this moment worth Is the benefit to you being able to be together and just have a little time together and as a couple worth the cost that it might dysregulate your child who can't be with anybody else at the moment. So picking up on that, she also gave me the details for like, I've been to this like um for cranial, whatever it is, head massage thing. Yeah.
00:40:25
Speaker
but he just looked at you and went, I'm really worried about you. So anyway, that's not the question you've answered. The question is how you keep your joy. And I suppose the reality is sometimes the joy just isn't there and it goes. And being told to do self-care is absolutely useless.
00:40:42
Speaker
Having somebody else who gets it, that's the only, only thing for me. And I know for it for the ut you know my fellow parents PDA-ers, That lack of judgment, that complete understanding that can see what you need an individual and as a human being before anybody else can see that is, i think, what keeps us able to then come back up again and go, right, fine, I'm good again.
00:41:11
Speaker
Yeah, I would agree. and I'm just going to drop in here for anybody who's thinking, OK, but where do I find those parents? That there are loads of groups out there on the PDA Society website on our directory. Loads of the support groups have put their details up there so you can see how to find them. ah PDA Society have our own Facebook groups that are monitored. um Moderated is the word I'm actually looking for, rather than monitored. Nobody's monitoring you on them, but they are moderated so that we can make sure that kind of good quality information is in there and that people are safe. There are places to meet other parents. It's really... um
00:41:47
Speaker
But that is something that Suzanne is far from the first person to have said to me. I think it's almost every conversation. And in fact, I just last Wednesday was ah a was at a parents group myself and the sense of relief that families were feeling just to be able to sit down next to someone and say this happened and know that that person would go oh god that sounds hard rather than oh have you tried this or have you tried that have you like people who are just like oh no that thing just did happen um it honest to god it is the only space where you can say something um that would probably shock 99 percent of people
00:42:29
Speaker
And you'll have this, you know, your individual next, you will go, oh yeah, yeah, we've had that too. And and you know it was like, wow. um Yeah, it's it's so special and it's lifesaver. So it's that lack of, not only the lack of judgment, but the complete understanding and the
00:42:52
Speaker
acceptance that the voice that says what worked for us was rather than have you thought about this have you thought about a sticker chart you know we've all heard this and but what worked for us was the other thing that and I will come back to the wedding thing but the other thing that I found incredibly and you know useful on ah on a practical level is having parents who are walking a few steps ahead of me on this journey and then that enables us to be able to help the parents who are walking a few steps behind so having parents who could become close friends whose children had been out of school before my child got to that point who helped us in terms of knowing how to advocate that and the PDA Society were absolutely brilliant on that
00:43:42
Speaker
So like even maybe a year before my PDA or couldn't cope with school, we thought, oh, well, thankfully that's not that's not us. you know And then I remember having our first call with the PDA Society after we'd gone on the website and clicked the button that said please can somebody call us and we had a wonderful conversation with somebody who who booked in to call us back and hearing that statistic for the first time that 70% of children with PDA profile are not in school.
00:44:14
Speaker
And I was like, well, 17 percent. She was like, no, seven zero. And I remembered that for both of us dropping like a weight of like bloody hell, and because we nobody chooses to be the family where you've got a child not attending school. at Absolutely.
00:44:32
Speaker
um So ah yeah, having that, ah you know, being, it's again down to lived experience and that lived experience gives compassion.
00:44:44
Speaker
And, um you know, for example, not being able to go on holiday The advice from from my PDA fellow parent friends was it's like, don't push it.
Planning an Inclusive Wedding
00:44:55
Speaker
Just go. If you don't want to go on holiday, that's absolutely fine. And then we just hold our nerve and we hope for the best. And if it changes, it changes. But again, we have to be prepared to not go on holiday. So learning all this is all counterintuitive. You're not going to hear it from a professional.
00:45:11
Speaker
You're only going to hear from another parent who deeply understands. Yeah. but The wedding. The wedding, yes. About because. we'd been together for, i don't know, 14, 15 years.
00:45:26
Speaker
We, beat again, before burnout, so we've kind of got life before burnout and life since. It was about two, almost two years ago, um whilst both children were still at school, and we had a ah ah great carer that was coming for a couple of hours every couple of weeks. um And, you know, still works with us, but unfortunately, since burnout, Joseph is not able to really have anybody else come into the house.
00:45:54
Speaker
He's... yeah he wants He only feels safe with me or his dad at the moment while he recovers from burnout. But at the time, um we were able to go out together for a couple of hours every week or every couple of weeks, just like go for lunch or go for a walk. And on one of these walks, out of nowhere, we just kind of... and And there was nothing romantic about it. There was no proposal. There was no engagement ring. We just happened to have a conversation, which probably started about the fact that, you know, God, we should make a will or something like that, which was...
00:46:23
Speaker
um But like that, which ended up with us deciding to get married. And and I don't know if it it was particularly informed from a PDA point of view, but I think the fact that our starting point was that we wanted our wedding to be um reflective of who we were as a family and as as a um where we live in our community. So we got we got married locally.
00:46:51
Speaker
Everything was local and we're very lucky to live in a community where we can kind of walk to everything. So the flowers came from um our local florist. who's a mom of a child in Frankie's class. yeah Our rings came from the local, almost next door to their craft jewellers. Our reception was in a local air pub and they um the marriage itself was in Clisold House, which is in Clisold Park, which again, before burnout, we would spend a lot of time with and our children had played since you know they were babies and toddlers in the playground which we could see through the windows of the room we were getting married so we wanted it to speak of us and our community we didn't want anything that was all bells and whistles and we didn't want it anything to be perfect and i think that's you know you sort of you the starting point of being a parent of a pda or is lowering all your expectations and just going with what's important what
00:47:53
Speaker
You know, you talked earlier about keeping safe. Bottom line, what's the most important thing? What can we let go of? um And then there were little practical things like, you know, I knew I wanted a short dress. I knew I wanted a sort of 60s Chelsea registry hold style. um But I also wanted a short dress because I knew I would have two boys climbing on me and I didn't want them feeling like, you know, they're pulling a train out from under me.
00:48:22
Speaker
Also, you know, we've been together a long time. I'm not interested in bloody party favors and, you know, a big... london um We wanted to be our authentic selves. Use that cliche. Um...
00:48:36
Speaker
So and then we brought our try to involve the children as much as possible, and they were old enough to understand understand what getting married was. We went on a a um and like a wine tasting for ah before the the wedding meal and we brought our PDA or with us because he didn't he didn't want to stay home and it was early evening. It was fine. um And there's a little garden at the back of the pub and there was a little dog in there who I happened to go to put my hand out and he bit me.
00:49:09
Speaker
but My PDA is terrified of dogs, terrified of insects, he's terrified of getting bit or stoned or anything by any anything. So I knew that like he came out going, what happened? So did that dog bite you? And I was like, no.
00:49:23
Speaker
yeah The whole time pretending that I hadn't been bit. The wine tasting helped. i mean Wine tasting helped, but like I was just sitting there with like you know blood seeping from my hand. of course, I had to go and get a tetanus the next day and all that kind of stuff. you know I mean, that was just one of those sods law things that...
00:49:41
Speaker
things happen but you know that's the level of you know you're sort of accommodating and then on the day itself i mean we i did think about whether i should send out an email i really thought long and hard about whether i should send out a message to everybody that we'd invited who were really you know we kept it at close friends and and um close friends and family but um of course that still ends up as being like about 80 or 90 people and and i thought should i set out a an email that explains how our children tick, if you like. So along the lines of, please don't feel the need to make small talk with Joseph. yeah like um
00:50:19
Speaker
And then I thought, actually, I don't want to do that. i don't want to to make a thing of that. and And so I suppose, you know, one of the important things that we did was yeah we had a brilliant again, our photographer, Jason, who was his local, a really brilliant creative photographer who we knew because he'd gone to his children had gone to the playgroup that Joseph had gone to and our children had gone to.
00:50:41
Speaker
And he used to take the, for for fundraising, he used to take the pictures every once a year, our family photos, to fundraise for the nursery. He spent time with us in advance, which is so brilliant and generous of him. You know, he spent time with us so the kids got to know him. And he was, you know, very keen on reflecting us as we were, if that was what we were.
00:51:03
Speaker
and So our photos are full of activity. They're full of, you know, kids running through the shot. And they when they are and they're, you know, Frankie's got his... m his PlayStation, not PlayStation, what call him?
00:51:18
Speaker
Nintendo Switch. Yeah, he's got his Switch with him, with a long lead, which is attached to a battery pack in his car. And all of the photos, you know, he's Nintendo Switch. So the first thing is like, okay, that's the way he is going to help himself regulate throughout the day. He also, on the day, didn't want to wear the suit that we bought for him, which was completely no surprise. So on the day, he just wore the trousers and a T-shirt. Joseph did where decide to wear the trousers, the waistcoat, the shirt and tie, because I think it was novelty, and he wore a little hat. And he looked so cool. He was just the full Johnny Depp, you know. and We didn't ask them to, ah we didn't ask them to, or or rely on them to do anything particular, but we offered Joseph just about on the day or the day before, would he like to be the person that brought us the rings? He decided that he would like to. And I think that played to his, again, his comedian sensibilities that he could have an audience. um
00:52:15
Speaker
and And so I think it was just about we we we thought about should we have a silent disco? with We thought about that. um and And as I say, partly also because my husband's neurodivergent and we ended up not doing it because it was probably just...
00:52:32
Speaker
not more trouble that was worth, but we didn't think that it might necessarily assist anything. So I don't think it's about planning, but it's about putting them at the heart of it and about what that would mean as part of our friends and family. So in the same way that we wanted to have our friends and family have the best day, we wanted them to have the best day. But like, you know, and then Emily, who is our carer, spent the day being the person that was with them as well so that we could be a couple. But together, so, you know, for us, it was in a pub, it was very, very, very sort of, you know, beautiful, relaxed environment. But of course, you know, I had Frankie on my knee for the speeches with playing his Nintendo.
00:53:17
Speaker
It was a moment where Joseph, understandably got overwhelmed by the amount of people and noise and picked up a butter knife and looked a little bit threatening to and and but you know i've just made him feel safe and you know he's not going to butcher anyone to death as my husband said it's fine it's okay uh just as a fight or flight response they were absolutely brilliant we arranged for emily to take them home a bit early
00:53:48
Speaker
So we could stay. and They did stay for a bit of the dancing. We got some great footage for some guests that sent pictures of our PDA are dancing with his little friends that were also invited and just thrown shapes on the dance floor.
00:54:03
Speaker
And I thought that was lovely. And then a few weeks later, I showed Joseph the the the videos and he said, yeah, I hated that. And I thought, He was masking, you know, he was the whole day and um he hated the noise and But, and I don't say but lightly, again, back to the, you know, he he understood and he kept it together. and he Yeah, he understood it was important to the the rest of the collective of the family. and And we didn't push him over the edge. I mean, at no time ever would we ever, not that day, not any day, be in a position where we're sort of telling him off for not doing
00:54:47
Speaker
i' Sorry, I'm aware that I'm kind of talking around in circles. But the other thing was, like so then the end of the night, we get we we we actually were the last to leave, myself and Stu with my sister. with surprise when We walked back and ah I kind of managed somehow to but keep hydrated. So I wasn't, you know, wasn't off my phone.
00:55:07
Speaker
Stu on the other hand, he'd eat me you know, he'd kind of had a fair old good time. We got back here. It was one o'clock in the morning. Emily was here with the kids. Both kids still awake. course, they wouldn't go to sleep without us. So this was our first night of our our honeymoon was like, you know, um ah Joseph wide awake until 4 a.m. because he'd had such a stimulating day. Frankie asleep, sitting up on the sofa. So Joseph's two quite drunkenly had to carry Frankie up the wood stairs. And just remember hearing this massive crash as coming up.
00:55:42
Speaker
You crashed out on the floor here and Frankie just kind of waking up, standing up, looking at him and then climbing into bed. so We still had to come home and be the parents at the end of it. Yeah. Four days honeymoon in in Ireland, which again, I wanted to just spend time with my family. So the honeymoon was with my dad, my sister, her husband, my aunties and uncles came along um and. And my sister and brother-in-law and my dad spent a bit of time with the kids just so we could have an hour or two of being together. yeah You know, it's, to be honest, you know, low expectations works for us, for all of us.
00:56:19
Speaker
Yeah. And one of the things that I really loved is when you showed me your wedding photos, they, lots of wedding photos look like identikit pictures, like any family with people of those heights would be arranged in that order. And it's almost a case of kind of disguising who you are for tradition. And I thought in your um in your wedding photos, that's not happening at all. There's a real kind of sense of who the family are and it's a really beautiful thing. So we're doing two of these. The next one of these, we're gonna talk about um kind of how you maintain your career and if you maintain your career as a parent of ah a PDA. And we'll take a little break before that one. But before we go, i have a couple of kind of just final
Reflections on PDA Awareness and Potential
00:56:59
Speaker
questions for you. And the first one is,
00:57:01
Speaker
What do you wish you knew about PDA when you started out on your parenting journey?
00:57:11
Speaker
I wish I knew so much. I just, I mean the main thing is I just wish I understood PDA and I wish it was okay to see my child as an equal and as an individual rather than somebody I had to parent.
00:57:29
Speaker
And if you are in the room now with a parent who's kind of Just starting to come to grips with um the idea, maybe asking themselves whether or not their child is a PDA-er.
00:57:42
Speaker
Is there anything you think that they should know or that they should think about that would be helpful for them? I think the just the knowledge that um this is a disability of the nervous system.
00:57:55
Speaker
So all of those, you know, decisions that we make around lowering demands at home or not forcing a child to attend at a school if it's an environment that causes them damage.
00:58:10
Speaker
um All of these are, how would I put it? It's like, this is what the disability is. And we're not, we're looking at accommodating a disability and understanding that you we're not only having to accommodate a disability, we're having to accommodate a disability that most people don't understand, don't see.
00:58:33
Speaker
So learning that It's okay to take that leap of faith. It's okay to see this for what it is and to see what you're doing as being accommodating a disability.
00:58:49
Speaker
That's essential. That's what we are doing. yeah We're not trying to subvert family life, society, parent parenting. We're not trying to be exceptional.
00:59:01
Speaker
We're trying to accommodate the disability that the rest of the world can't see. Okay. And is there anything else that you just think, okay, people people need to know this that you want to say before we wrap up this one?
00:59:16
Speaker
People need to know that my children are bright and smart and clever and are full of potential. And um when their disability is understood and accommodated, they are the best of people.
00:59:31
Speaker
And I have I am going to fight to keep accommodating them and to keep understand to make people understand that this is why I do it, because they will make all of our lives better in the future.
00:59:51
Speaker
Fantastic. Thank you very much. If you enjoyed this, we're going to try and have fairly regular lived experience experts on this podcast alongside the kind of academics and teachers and people like that, that you'll you'll have seen scattered amongst this, because what we're really hoping is that hearing about people's real lives helps you work out how to get the best out of
Conclusion and Subscription Invitation
01:00:11
Speaker
your real lives. um So thank you very much. Thank you, Suzanne. Thank you.
01:00:17
Speaker
So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub. Sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free.
01:00:30
Speaker
As a thank you, they get free access to all recordings and self-guided training on our training hub. Thank you, subscribers, for your generosity. If you'd like to become a subscriber, there's a link in our show notes.