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Parents of PDAers: Mental health & wellbeing
188 Plays6 hours ago
In this episode we're chatting to Emma McDonnell, parent of two autistic children including one with a PDA profile, about the realities of parental mental health and wellbeing. Emma shares how small, practical shifts can make a genuine difference when you're running on empty.
For information and guidance about your circumstances, you can get in touch with our support service through our website.
Guest links:
Facebook and Instagram - @theemmamcdonnell
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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. Hello and welcome to this week's podcast. My name's Rachel and I'm your host for
Parental Mental Health with Emma McDonnell
00:00:28
Speaker
today. Today we're going to be focused on the topic of parental mental health and wellbeing. And my guest today is Emma McDonnell. She's a parent of two autistic children, including one with a PDA profile and identifies as neurodivergent herself.
00:00:42
Speaker
After coming through her own burnout, she now guides parents and carers of neurodivergent children back to themselves. Her work helps them quiet the inner critic, stay calm in the moment and reclaim those pockets of time and identity. She does this through her online course, her free resources and her writing, including pieces in the Sunday Times and Special Needs Jungle. So welcome, Emma. We're really pleased to have you on our podcast.
00:01:09
Speaker
Thank you so much for having me. It's an absolute honour.
Real-life Challenges of Parenting with PDA
00:01:13
Speaker
Oh, that's great. So I know we've spoken in the past and you talked about that your child's reached sort of crisis point at six years old. So can you take us back to that time and tell us what life was really like for you as parent then?
00:01:28
Speaker
Yeah, of course. I think at that time, i was just incredibly overwhelmed. it was It was very early in our journey and we didn't fully understand what we were seeing, i would say.
00:01:41
Speaker
we already We knew that our child was autistic by this point. We were pursuing a PDA diagnosis. I'd read The Explosive Child by Dr. Rusgreen, which was amazing, really helpful for us. So we had started to adapt our parenting. We had a fantastic OT that we were working with, and that was starting to help us understand our child's world. I think back then, what it was, it was the gap between knowing the theory understanding
00:02:12
Speaker
actually living it day to day. um i was still at the time trying to get them into school. You know, there's this huge social pressure, your child should go to school.
00:02:23
Speaker
And I wasn't entirely grasping the impact that that was having on their mental health. um I didn't really understand about emotionally based school avoidance back then. I'd heard a few terms being thrown around. Back then it was still called school refusal.
00:02:42
Speaker
quite negative so my child reached a crisis point which I won't go into the details because obviously that's private for them but at at such a young age to fear that your child no longer wants to be here pushing school attendants to have that that effect on them that has a profound effect on you yeah that changes everything and I really I felt like I was failing no matter what I did I had so much love in me I was just drowning in the practicalities in the day-to-day you just you can't really explain it to anybody that's not living it yeah
00:03:27
Speaker
So I felt very, very
Resilience and Maternal Instinct in Parenting
00:03:29
Speaker
isolated. i was very lost. I just wanted my child to be safe and happy, but I just didn't understand. I didn't know what that would take. So I think back then, every ounce of my energy just went into trying to stabilise family life and just keeping everyone safe because there was a younger sibling too.
00:03:50
Speaker
yeah So, yeah. It's hard, isn't it? And as as you say, I think, you know, when when you're sort of, in the thick of it and you just it's just that trying to carry on but it's tough isn't it and I know you've mentioned before that you know other people have said to you you know how do you do it Emma you know how do you keep going and it is that that's resilience isn't it so what kept you going in those difficult times Yeah. um How do you do it? I think many SEND parents will understand is possibly one of the most infuriating questions. aspect
00:04:26
Speaker
I agree. um I mean, you do it because you have to, don't you? What other choice is there? And I think anyone would if it was your child. What would you do? You're obviously you you you just keep going because you have to So I think on the outside, you look like you're this regulated coping.
00:04:45
Speaker
parent but underneath you know but you're you're masking and you just I mean I certainly felt like everyone really knew the truth like they could see under the mask that they knew that really I was failing i mean now I can I can take a step back and I would I could tell other parents you know give yourself more credit because actually you're probably doing much better than you think you are.
00:05:09
Speaker
I think in terms of of what kept me going was just, I suppose, a fierce maternal instinct, really. And just the the belief that it wouldn't be this hard forever.
00:05:22
Speaker
And love. I mean, I was completely... I was completely on the floor, really.
Importance of Self-care for Parents
00:05:28
Speaker
You know, you you go to bed, you likely don't rest very well, still get up and you do it all again the next day. but You do it because whatever choice is there, you have to do.
00:05:39
Speaker
Yeah, yeah. And also, and I think, you know, and when people say, you know, oh oh, how are you? How are things? are You automatically just go, yep, fine, because you can't get into the, there's no point, is it, going into detail because people don't won't get it. They won't understand.
00:05:52
Speaker
Plus, it'll take you about two days to actually tell them how you're actually feeling. know. To get it all off through your chest. In truth, they don't really want to know. that exactly. They just want to say, I'm fine. okay it' so it's much easier just to say, I'm fine, yeah. So... So when you were in this survival mode then, how much attention were you able to give to your own well-being? And what was the moment when you realised you needed to start looking after yourself too?
00:06:21
Speaker
Okay, I think essentially I was in survival mode. And I think when you're in survival mode, you you put yourself at the bottom of the pile.
00:06:31
Speaker
Everything else feels more urgent. So, you know, you're co-regulating with your child and, you know, that was all consuming back then at that time. and you've got things like OT appointments you might be fighting for a diagnosis chasing up EHCP applications we were dealing with part-time timetables and negotiating that and explaining EBSA over and over and of course all the endless research where you're just trying to find answers so really with all that going on you kind of forget about yourself and I think
00:07:08
Speaker
The turning point came for me in moments where my reactiveness felt uncontrollable and scary to me.
00:07:20
Speaker
So as someone who identifies as PDA myself, losing control doesn't feel safe to me. um And I remember one day the kids were really small.
00:07:33
Speaker
And it was a really hot summer day. um so obviously you're struggling with the heat, which I probably didn't realize as much then. So we had the paddling pool out. And I remember next door neighbors, I could hear over the fence had their paddling pool out too And you could hear lovely laughter and chatter and the kids playing and the mum interacting. And it was just idyllic. It was lovely. And on my side of the fence, you could hear screaming and arguing.
00:08:01
Speaker
you know, safety concerns where I was constantly pulling my PDA out of the younger sibling and it was just so overwhelming. It was too much.
00:08:13
Speaker
And i remember I shouted and then i I pulled the plug on the pool with no warning whatsoever. i just pulled the plug and it emptied. And I just remember their little faces looking up at me going, please, mummy, no. Oh.
00:08:30
Speaker
oh And I just stood there thinking, what have I done? you know, and I dried them. It's quite emotional even now. and I dried them off. I got them settled, which generally back in those days meant sitting in front of the screen. It was watching Bluey mainly at that time.
00:08:50
Speaker
And I just went up to my room and sat on my bed and I sobbed. And I just thought, I can't i can't live like this. So the first thing I actually did, it was something that I touched upon earlier in my life, but I hadn't done it for a long time.
00:09:06
Speaker
I went back to try and guided meditations. And I started doing it first thing, just a few minutes, if I could get it done before anyone woke up. I did have an early riser.
00:09:19
Speaker
or again, you know, during a bit of a screen break for them. And I would just take those few minutes for myself. And really it was, it's all about the breathing because it's really the breath work that calms calms your sort of baseline down and you know i would tell the kids if they because you know I did get interrupted obviously and I would just say mommy's doing her breathing at the moment it helps mommy be nice and calm because you know it's all modeling isn't it for them um
00:09:51
Speaker
And sometimes they'd join in and sometimes they climb on me and i'll interrupt me. And sometimes I had to stop and come back to it later. But but that was OK. And it did start to help. And then later I would start doing like the breathing exercises if I was able to get on a dog walk out in nature. if my husband was around. But really all it was was realizing that I needed to snatch just those two or three minutes For me, just to take myself off and breathe and just regulate myself.
00:10:23
Speaker
Yeah. Yeah. And I'm sure lots of parents who are listening will identify with those moments where you you suddenly take stock and you go, what what what have I done? What have I you know, how how am I living like this? And it's just, I just can't carry on the way. And then that's the turning point, isn't it, of of trying to manage your own emotions, which then obviously, as you say, you're role modeling. So therefore it's' it's helping with the children. So I know you've also talked about in the past, you've talked about micro moments, taking those micro moments in everyday life. So so what are micro moments and how can parents who who do feel overwhelmed at the moment begin to find and use them?
00:11:04
Speaker
Okay, well, I think, you know, being realistic, parents like us, with families like ours, um we don't we don't get to do spa days or long soaks in the bath or really have hobbies that take up lots of our time because we're pretty much on call 24-7.
00:11:23
Speaker
And even, I think, sometimes even arranging a break for yourself, means that somebody else has got to understand your child's nuances, you'll end up worrying the whole time, you're dealing with the fallout afterwards if they've masked through it and then they unravel.
00:11:40
Speaker
So i had to sort of learn that actually there was no recovery coming. This is our life. So I've got to learn to look after myself within it. And that has to be realistic and that has to be accessible.
00:11:55
Speaker
So I think that it started with acceptance, making peace with the life that I was actually living, even though it wasn't the one that I necessarily thought I would be living.
00:12:08
Speaker
So micro moments really are just, they're built around any moments you can take that are just being kind to yourself. So I might do things like a very short grounding exercise to try and catch myself, you know, bring myself back to the present moment before things escalate.
00:12:28
Speaker
It might be actually that I just make very small choices through the day that just reflect my own needs and wants and and kind of remind myself that I'm still a person and give myself that tiny, know, shred of autonomy, even if it's something as simple as I'm going to choose this cup today because it's my favourite one to make my cup of tea or something that I did very intentionally for a while.
00:12:54
Speaker
And it would only take 20 to 30 seconds each morning before someone was sort of screaming, mom, was that I would deliberately choose with intention, a pair of earrings each morning to wear. Not that I was going anywhere or, you know, doing anything. Just because i was sort of honoring myself. I was showing my brain i still matter and that I can make some choices within my own life.
00:13:22
Speaker
Yeah. And actually micro moment might just be like a little glimmer. It might be something really joyful, something you notice, you know, like the sun coming through the trees, something in nature maybe.
00:13:36
Speaker
And if you just pause, if you just take a breath and just really let that in, you know, those glimmers, it, it makes such difference to the way you feel.
00:13:48
Speaker
um Yeah, so grounding, i think, is what i what I like to do is... I like to dig my heels into the floor, my bare feet, and take a breath.
00:14:01
Speaker
And I find that's a really good way to just bring myself back down. And really, it's it's it's the things that you can do in those few seconds or those few minutes in between everything else.
00:14:17
Speaker
So it's just where you slow down and you take something back that's just for you. Yeah, yeah, which I think as parents of PDA children, we generally don't do, do we? Because we're generally either firefighting in the moment or planning what's happening next to try and prevent another fire starting somewhere else that actually we're not taking stock of what I'm doing. You're racing on you. You're always hyper vigilant. We are. Yeah, yeah. So we do need those those moments. So...
00:14:47
Speaker
We know from our, you know, the many, many parents who contact our support service that they say that they feel isolated, exhausted. Why do you think so many parents keep their struggles to themselves rather than reaching out for some support?
00:15:02
Speaker
I think it's probably twofold. First of all, I think it's about protecting our children. In reality, much of our day to day would truly shock families that are outside of our community.
00:15:16
Speaker
And we don't want our children painted as naughty or defiant or misbehaving when we understand that that behavior is distress. And we never want them to be blamed or shamed in any way because it's not like they're making a choice.
00:15:33
Speaker
So I think that's the first part. But secondly, I think there's also a big fear of being judged ourselves, having our parenting judged or or having things misinterpreted or having professionals or social services get involved that, you know, may not understand PDA.
00:15:57
Speaker
And, you know, you do hear horror stories. You hear about parents being blamed in in worst case scenarios, children removed or or unsuitable parenting courses suggested or imposed that don't fit a PDA profile. So I think parents actually have very valid, very reasonable concerns. They're not being neuro neurotic.
00:16:22
Speaker
So parents do tend to mask. They hide how hard it is because of these fears and they go without the help. And it means that they end up exhausted and it is very lonely.
00:16:35
Speaker
Yeah, right's it's it I think it is. It's really, really difficult, isn't it, for many parents? Because you don't you don't want to be explained to everybody what your child has just done, because, you as I say, people just don't understand.
Finding Support as a Parent
00:16:49
Speaker
So, you know, I know you've worked with lots of parents of PDA children who um are afraid to say things out loud. Have you have you got any examples of from parents that you've worked with? or um And, you know,
00:17:03
Speaker
why they've said it's they' they found it so difficult to open up about their experiences? I think really it links very much to the last to the last question, actually.
00:17:15
Speaker
and It's what happens behind closed doors, essentially. So i think child-to-parent violence is incredibly common in families like ours.
00:17:26
Speaker
Often there are very serious sibling safeguarding concerns. Sometimes you need to keep them completely apart. And sometimes parents are just feeling so completely controlled by their child. Shaping, you end up shaping everything around keeping everyone regulated because you feel like that's the only way to keep them safe.
00:17:51
Speaker
So parents often won't admit these things for fear of judgment um or, you know, for fear of just getting unsolicited advice from people that just really don't understand their life and don't understand what's going on.
00:18:07
Speaker
And I think another thing that doesn't get talked about very much is the hidden rage, actually, because quite often parents feel a huge amount of rage and it's not It's not aimed at your child.
00:18:24
Speaker
It's aimed at the situation, um the relentlessness of it all, the injustice. you You try to hold it all in, but it it bubbles over. So you might find yourself making snappy comments or or losing the calm that you've been trying to hold on to.
00:18:44
Speaker
as And then, you know, comes the shame and you just feel ashamed of yourself. But it does need a release. And almost nobody says these things out loud.
00:18:54
Speaker
Yeah. You know, that's it. We keep it all to ourselves, don't we? And, you know, had an incident yesterday where I'd made, the eyewi id i'd sort of reached my fill. And then I just said, phrase something the way that I wouldn't normally phrase it. And then that kicked off a massive meltdown. And then you're like,
00:19:11
Speaker
okay right now this is going to take much you know if I just kept that in then this would next lot of meltdown wouldn't have happened but it's so easy done isn't it because that's your your own capacity yeah quite often when we're getting towards the end of the day and it's around um bedtime and it tends to be that tends to be often when my PDA child will start to slightly and and actually quite often at that time they're seeking connection um but I am so done by that point I am so exhausted and you know it takes every ounce of everything I've got to stay trying to be that calm regulated parent and I can't always but I've now started to say to them look I'm at capacity yeah I've got very little left I'm i'm doing my best here
00:20:00
Speaker
That's a good idea. Yeah. So what would you say then to a parent who is listening and thinking, if I tell someone how hard things are at home, they'll judge me or get involved in a way that makes things worse. What would what advice would you give them?
00:20:15
Speaker
I think I would say trust your instincts. Because actually connection, connection for parents like us really matters.
00:20:26
Speaker
But choose who you connect with. I think if you can find a safe space with like-minded parents who... live life in a similar way to to your family that will be incredibly helpful so the PDA Society was actually really instrumental for me early on there was an incredible wealth of information especially all the different printouts in terms of trying to help schools understand when I was explaining things to the local authorities or the EP or the OT it just helped
00:21:01
Speaker
find that um you know to get that understanding with the professionals i think if you meet any resistance from professionals then you know that the evidence that you have is coming from credible established and respected source so that that's helpful um And also, I think it's really important to find your tribe. So Facebook groups were helpful for me early on, various PDA Facebook groups. They were invaluable in giving me some insight and feeling less alone.
00:21:38
Speaker
The only thing I would say with that is be careful with your own time and your own capacity, because sometimes people can share stories and it can be. I tend to take on everyone's emotions and it can be quite...
00:21:51
Speaker
quite hard and quite draining so um i would almost have to dip in and out depending on how my capacity was at the time but I think it's just really important not to keep it all to yourself you aren't alone um there are thousands of families that are experience experiencing life in that you know a very similar way to you are so i think If you stay quiet and you you make yourself feel more isolated, it's so important to get that connection. Definitely, definitely. And we have, you know, we run Facebook groups for parents of different ages. And on our website, there's also in the directory of organisations, there's a list of sort of local PDA support groups as well, which might be helpful for and some parents.
00:22:41
Speaker
So now that you support other parents, what are some of the biggest lessons or practical strategies you helped them discover sooner than you did? I think it's it's learning to bring your baseline down a little bit. So we're never going to go from being very hypervigilant, you know, shoulders up around our ears to being completely horizontal, zen, chilled out. That's not realistic for families like ours. That's that's not going to happen. um What we're aiming for is to be just a little bit more regulated than we were a few minutes ago.
00:23:18
Speaker
Bringing it down ever so slightly. So tools like meditations, affirmations and grounding, they are very helpful in terms of of bringing that baseline down and making you less reactive.
00:23:34
Speaker
And further along, we talk about how to set some PDA friendly boundaries. And also we start to look at what's missing from your life and just reclaiming very small parts of it realistically, just in tiny moments that fit the life you're actually living right now.
00:23:53
Speaker
o So for me, this evolved over several years, courses and research. And there are certain practices that that I continue to lean back on even now when things start to feel too much.
00:24:10
Speaker
And because i identify as PDA myself, I think I can understand this from both sides. So I know what a demand can feel like when you're triggered from the inside, as well as parenting a child who feels it too.
00:24:26
Speaker
So I think that shapes how I try to help other parents. I don't have a magic wand, you know, not everything that's worked for me or that I suggest is going to work for everybody.
00:24:38
Speaker
But I certainly think that there's enough that's helpful that can that can help parents get to a better place than I did a little bit quicker than I did. and that's really at the heart of what of what I do and what I bring together in my course in Reclaim the Balance.
00:24:55
Speaker
Yeah, amazing. Oh, that sounds great. So for for parents then who are currently in crisis or feeling completely depleted and on the floor, what is the first step then that they can make today towards improving their own mental health and wellbeing?
00:25:12
Speaker
I think firstly, just realise that this is not your fault. You're not doing anything wrong. You are not a failure.
00:25:23
Speaker
and You're not alone. And actually, you're probably doing far better than you think you are. Also, there's no shame in in admitting if things are hard. I'm not a therapist or a coach. I'm a parent just like you.
00:25:38
Speaker
If you if you are struggling to cope, please do go and speak to your GP. Don't be afraid to ask for help. There are also some free resources that I have.
00:25:49
Speaker
So if it helps, you can download any of my free resources at emma-mcdonald.com. I have a breathing exercise and i have a gentle guide, and which just starts to reclaim just a little bit of time and space for you.
00:26:04
Speaker
well That sounds great. Yeah, it's just it's just taking that first step, I think, isn't it, which for many parents is the hardest bit. Once they've taken that first step, then they can see what the benefit is. But it's just mustering that energy because you're on the floor. you You're burnt out yourself. It's taking that first step. So please, you know, we do encourage everybody, obviously, if you are feeling...
00:26:25
Speaker
you know, really depleted, really burnt out. Just take that first micro moment for yourself and and see how that helps re-energise you. So my last question for today then, looking back at the version of yourself who was parenting through that crisis when and your child was six years old, what would you want her to know?
00:26:47
Speaker
And what would you want other parents in a similar situation to hear today? I think I'd tell her it's going to be okay. um It's hard, it's relentless, and I know it feels like it will never change and there's no way out, but it can get better and it will get easier.
00:27:11
Speaker
life isn't perfect now i'm not um i'm not a perfect parent but i try my best and the parents that i work with i help i try to we're not trying to help them be perfect parents but just more regulated ones m and that ripples out across everyone around you through your whole family i think i'd just say you will get through this it won't always feel this hard Oh, that's brilliant. i said That's a lovely note to end on. Thank you so much. And i really do think that what we've talked about today hopefully will resonate with many, many parents of PDA children and just give them that courage, that drive just to take that one step for themselves because it is that first step that's often the hardest and that, you know, as you say, they are doing a great job. It's just that very often we don't acknowledge it ourselves. So brilliant. Thank you so much. Really do appreciate you coming on our podcast.
00:28:09
Speaker
Thank you Thank you for having me. It's been a pleasure. No problem at all. And thank you to our listeners for listening. And until next time, please take care of yourself. Thank you.