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Ep. 1: Personal Resilience When Caring for a PDAer
1.9k Plays2 months ago
In this episode, Rachel Crutcher shares her experience of parenting a PDA child and how she has developed resilience along the way. We explore what resilience means, some of the research behind it, and the qualities that help it grow over time.
Rachel talks about how she copes during particularly difficult moments, and how she has stayed resilient while navigating her child’s journey through healthcare and education.
Deeper Dive Subscriber Episode
For those who’d like to go further, Part 2, an exclusive “Deeper Dive” subscriber episode is 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/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/
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Transcript
Introduction to 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 or 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.
Episode Focus: Personal Resilience
00:00:37
Speaker
Hello, my name's Sarah and I am your host for this podcast. and Today we're going to be delving into the topic of personal resilience, which I'm sure is close to many of our hearts.
00:00:49
Speaker
and Before we begin though, I'd just like to warn listeners listeners that we will be discussing themes on the topic of resilience, which may include some distressing examples. So just to say, do look after yourselves and if you need to step away, then please do.
00:01:04
Speaker
So
Rachel Crutcher's Dual Perspective on PDA
00:01:05
Speaker
I'm delighted this week to be joined by Rachel Crutcher, our guest speaker. um I'll let Rachel introduce herself. So morning, Rachel, afternoon, good evening, wherever you are. um Would you like to say a few words?
00:01:18
Speaker
Yes, of course. Thank you, Sarah. Hello, everybody. and Sarah said, my name's Rachel. um and And I'm a parent of and a PDA-er. I have an adopted 14-year-old son who is diagnosed with autism with and a PDA profile.
00:01:35
Speaker
So and I live and breathe and PDA and learn from him every single day. um I've also got some experience of teaching PDA-ers. I've worked as a secondary school teacher for about 20 years.
00:01:47
Speaker
and taught a number of PDA children in that context. and And I also work for PDA Society and as one of their lead trainers. So quite ah quite a bit of experience with PDA.
00:01:58
Speaker
Absolutely. So I think this will be a really, really interesting podcast. So let's start with some questions and give a little bit of context and background to the topic.
Understanding Resilience in PDA Context
00:02:10
Speaker
um First of all, I suppose it'd be helpful if we got a clear sort of mutual understanding of what we mean by resilience. So if you think about it in the context of a PDA-er and parenting a PDA-er, what does resilience mean to you, Rachel?
00:02:25
Speaker
Yeah, I think, know, it at its heart, I think it is the thing that keeps you going every day. It's like, it's the thing that drives you to put one step in front of another, keep understanding your PDA, understanding the behaviours and working out how you can help them best.
00:02:44
Speaker
You know, parenting a PDA yeah can be extremely rewarding when you see and the progress that they make. That may might and be sort of, you know, very small steps of progress, but actually for that individual, it's huge.
00:02:58
Speaker
So that can be really rewarding. But also also parenting a PDA can be can be challenging. So sometimes, you know, it's those things that other families might take.
00:03:08
Speaker
And for granted, you know, let's go out for a day at the beach. But when you have a PDA youre involved, then that becomes a lot more complicated. and And, you know, you might have planned a wonderful day and then at the end of it, they just can't go because they can't go through with what they've agreed.
00:03:23
Speaker
So those simple things which can become difficult. And therefore, it's those the resilience is that drive to keep moving forward and also to be able to accept that, you know, that actually sometimes those things can't be done.
00:03:37
Speaker
I think it it ah and also gives you that um ability to bounce back from and adversity.
Role of Resilience for Parents
00:03:44
Speaker
So, you know, it finds that inner strength within us that, you know, when things are hard, that we keep going. You know, when we're, you know, your child might have a distressed behaviour, when they're in meltdown, for example, they might, you know, have just have thrown something across the room towards you.
00:04:01
Speaker
It's that resilience that keeps you going and keeps you understanding and wanting to help. um You know, we often talk, I think, um certainly in PDA circles, we talk a lot about the capacity of the PDA-er to be able to to cope with demands. But actually, we also need to be thinking about the capacity of the parent or the carer or the support worker with the PDA-er and what their capacity is like because their resilience will increase that capacity and of and that individual. So I think, yeah, resilience is at the heart, I think, of parents in a PDA, certainly.
00:04:41
Speaker
Yeah, I love that expression, bounce back ability. I think that is so, so true. Yeah. And, you know, I guess for parents, carers, people who are working and supporting with PDAs, it's so important because if we don't have that resilience ourselves, then we're not going to be there to be able to show up, advocate, care for, support the PDA. yeah So lovely. Thank you. yeah Are you aware of any science which identifies what we need in order to be resilient?
00:05:08
Speaker
Yeah, yeah, there is actually, yeah.
Stephen Covey's Resilience Model
00:05:10
Speaker
and So um Stephen Covey, who you might have i've come across, has written numerous books um exactly on this topic. ah And he researches into how people learn and how and how that they change.
00:05:24
Speaker
And in his model of how people successfully make changes in what they do, he talks about and the need for three things to come together. so the first one of those is knowledge.
00:05:37
Speaker
So this is the what to do and why we need to do it. Then he talks about skill, ah which is the sort of the how we do it. And then willpower, which is, you know, essentially it's our motivation, isn't it? It's the the the want to do it, why we want to do it. So.
00:05:56
Speaker
He suggests that in order to improve our resilience so we can be more resilient, we need to be aware of and work on all three of those. So if we apply that sort of, you know, the the theory to a PDA context and parenting a PDA-er,
00:06:13
Speaker
So that knowledge will be the understanding of what causes those behaviours and the recognition of what's going on for our children in those difficult moments, but also in those happy moments and understand and reflect what's going on and also to understand what strategies we can do, how we can help and our children.
00:06:35
Speaker
from a skill perspective, and it's it's being able to put them into practice. So we might have that theory, but then what does that look like? What does that mean? and how do I put that into you know practice? So for example, we know that parenting a PDA, one of the strategies that we might use is give your child some choice.
00:06:57
Speaker
But actually, what does that look like? You know, do we give them open choices? Do we give it closed choices? How many choices do we give them? So it's the skill of actually being able to implement that and maybe how you deliver those choices will make a massive difference as to how, and you know, your child will react. So having the skill of delivering the knowledge and putting it into practice is important. And then, of course, that willpower.
00:07:22
Speaker
is the want to be able to support our children there and help them find their place in the world. You know, do we have that drive, you know, and and so that we can keep going and keep pushing no matter how many times we as a parent get knocked back.
00:07:38
Speaker
Actually, we really want our children to succeed. So those three things working together will sort of naturally help us build our resilience and therefore be able to parent our children much better.
00:07:54
Speaker
Okay, Rachel, so what characteristics do you have personally that would indicate resilience? So if I
Traits for Building Resilience
00:08:00
Speaker
was watching you in your day-to-day activities, what things would I notice that would indicate that you were resilient?
00:08:06
Speaker
Okay, I think, I think probably the first thing is and a sense of humour. I've learned over the years not to take things when things go wrong, not to take it too seriously and actually to to try to laugh at the situation. So for example, I had an incident last week where and my daughter had been baking and she'd left the bag of sugar, a bit, of almost full bag of sugar out on the worktop.
00:08:35
Speaker
And about half an hour later, my PDA-er, pat what was was getting very, very anxious. He was going in into meltdown. And as is one of his usual distress behaviours, he'll start knocking things off and he knocked this full bag of sugar all over the floor.
00:08:54
Speaker
So your initial reaction is... oh But then I managed to twist it and I laughed now on the floor and I started making pictures in the in the in the sugar.
00:09:07
Speaker
And then that sort of almost took him aback as to what he was doing. And then he joined me in that moment. And we were laughing about what pictures we were making. So it's that having that, you know, the the sense of humour that actually it's It's okay. It's all right when things, you know, when things go wrong and just to laugh about it and actually laughing as well, doesn't it? It naturally releases those happy endorphins, doesn't it? Which meant it naturally calms you. But if you, you know, if you Hopefully then if you can transfer that for your PDA, that will naturally calm their anxiety as well. So sense of humour, I think, is vital.
00:09:44
Speaker
What a brilliant de-escalation strategy as well, because clearly he was in distress and all of a sudden you've managed to de-escalate that by adding in that humour and that, you know, conveying the message that it's no big deal, these things happen. Brilliant. Yeah.
00:09:57
Speaker
Yeah, yeah, because I thought, well, it's it's done now anyway, isn't it? So it's like, well, let's make, you know, let's turn it into an and in activity that both of us found really funny. So, yeah yeah, that was good.
00:10:09
Speaker
and Again, then that's another thing that you've just, in the moment, you know, it's that positive mindset. How can we turn something which is, potentially in my mind a disaster I was thinking you know oh my god it's going to be sticky we're going to have ants all those sorts of things but you know does it really matter we talk about don't sweat the small stuff um you know that can be cleaned up so brilliant what else would we see Rachel Yeah, I think also is the seeking the why, it's that that constant want to try to understand what are the reasons behind the triggers, you know. So if he when he was was heading into meltdown at that point, what what's the why?
00:10:45
Speaker
and if Because if I can understand the why, then that almost sort of takes the frustration that the frustration that I might be feeling in the oh, we're going to, you know, something thiss else is going to get broken. But if I can understand why he's doing it, um rather than focusing on the behaviour of what he's doing, then actually that's lowers my anxiety because it's not I understand in that moment then that he's not doing it just to be destructive or he's not doing it just to be aggressive.
00:11:16
Speaker
He's doing it because he can't cope. So it's the understanding of the why helps me mentally stay calmer and therefore more resilient, I think. i'm Also, um I think recognise those small steps.
00:11:31
Speaker
I think, Very often we with as as all parents do, don't we, we look at the you know the progress our child is making and they might not be making the progress we want them to make in whatever aspects of their lives.
00:11:47
Speaker
And we look at the end game. We don't look at the the small micro steps in between and recognise actually, You know, this week we might have only had two meltdowns, whereas whereas last week we had four meltdowns.
00:12:00
Speaker
And even though for some people that might not necessarily be a positive because we're still having meltdowns, but actually that's progress. So it's recognising those small steps because I think all humans need to feel that they're making progress, don't they? That if we all feel whether it's the child or whether it's the parent, you all want to feel that actually that I've achieved something more this week, this month than I have last time.
00:12:27
Speaker
And therefore, if we recognise those small steps, even if it is less of the bad stuff that we don't want to see, then that's still progress. So I think I certainly try to see all the time um what steps he's making forwards. You know, you know, my son...
00:12:47
Speaker
really struggles. He's got learning difficulties as well. So he really struggles with reading and writing and so just noticing that actually when he wrote that birthday card last week, his writing was a little bit smaller. It wasn't huge.
00:12:59
Speaker
And then he didn't cover the card with loads of huge kisses all over it. He did some small ones. And I thought, you know, that that that was a brilliant step forward for him. So, yeah, recognizing the small stuff. Yeah, I think what you're describing there really is the importance of having a positive mindset.
00:13:14
Speaker
And it can be very, very difficult to do that. But we know that both positivity and negativity are contagious. So however we are and whatever our mindset is, um that's likely to you know have a knock on effect with everybody else in the family.
00:13:28
Speaker
and also our PDA as well. um And I think also what you articulated really nicely was that need to understand. So first of all, before reacting, seek to understand, you know, what is it that's going on for the child?
00:13:41
Speaker
This is not, you know, about defiance or a deliberate attempt to sabotage something. This is distress. so So actually seeking to understand that is great.
Maintaining a Supportive Environment Through Reframing
00:13:51
Speaker
um it It is. And I think it's, you know, it is the important bit. That understanding is your key, isn't it? It's the understanding is the key, which what helps you build your resilience. um And I think also sort of another indicator of resilience would be what support you've got in place as well. You know, you need understanding. You can't be one man band. You can't do everything on your own. So whether it be support from family, from friends, from, you know, school, whoever it might be,
00:14:21
Speaker
But your you've got people there that will support you when you need it. And I think that's really, really important as well. Yeah, absolutely. And of course, there will be um parents, carers who are solo parenting, you know, which can be doubly difficult.
00:14:37
Speaker
um So we will have a look at some of the things and that we can do in that situation a little bit later on as well. But I think one of the things as well, Rachel, that you've demonstrated your ability to do is actually reframe things.
00:14:48
Speaker
So rather than seeing things as a negative, actually, how can we turn this into a positive? Or how can we reframe it so it's not such a big deal? So, you know, a two kilo bag of sugar has been knocked over, but actually that's a quick fix. It can be swept up, vacuumed up.
00:15:04
Speaker
and You know, a window hasn't got broken that's going to encounter a lot of costs. So I'm trying to put things into perspective and keeping that positive mindset and reframing things is is really, really helpful.
00:15:15
Speaker
Definitely. Oh, Kelly. So the next question, um if a new parent was going to come to you for advice or a new carer, um what would your top tips be for them when it comes to building resilience?
00:15:28
Speaker
Right. Okay. Yeah, definitely. I think certainly and sort of, you know, being 14 years in, I do things extremely differently than I too did as a as a um ah parent when I first found out about m PDA. So I think, first of all, and try not to take things personally. You know, you might have, you know, um your child might be physically aggressive, verbally verbally aggressive. They might say things to you that are extremely hurtful.
00:15:58
Speaker
But actually, we need to remember that it's... it's they're showing those behaviours to us because we're probably, you know, we're the people they trust most in the world, aren aren't we? You know, as parents.
00:16:10
Speaker
The children can show us their true feelings and therefore we probably see their worst behaviours because they're releasing. And I think it's understanding that actually that's not personal about us.
00:16:22
Speaker
They might just have said, ah hate you, whatever it might be, but they don't. They love you more than anyone else in the world. And actually they're showing that by releasing those behaviours with you. So it's almost a bit like a backhanded compliment, I think. so It's that don't take things personally. Things can be hurtful, but just remind yourself that you're the one that they love most in the world.
00:16:44
Speaker
That's why sometimes it can feel quite personal, but it's not personal at all. and That's another great reframe that you've just done in the moment. So, yeah, turning it into a positive that actually...
00:16:56
Speaker
it's because your child trusts you and they feel able to show their authentic self. So, um so yeah, they're not masking because they, they have that wonderful relationship with you. Yeah, definitely, definitely. And I think also another, another thing and with your PTA is always start the day afresh. So start, you know, even if something's happened the day before the PTA will need to know, like my son needs to know,
00:17:21
Speaker
that everything's okay. And even once he's had a meltdown, he needs to know that everything, you know, is, you know, do still love me, mommy? He asks and, you know, it he comes and gives me huddles that you're not cross anymore, you're not cross.
00:17:34
Speaker
And like, no, no, no, you know, it's all fine. But for our own mental state, we need to start the day afresh. So as well as for the PDA, we need to start it because that will build our resilience.
00:17:45
Speaker
If we're holding on to anxiety that we, but start to build up in us the day before because if we were dealing with some distressed behaviour. Actually, that's only going to start our the following day and with anxiety building up. Is it going to happen again?
00:18:03
Speaker
Start every day with a clean slate. It's really important, not only your PDA, but for us as parents as well. i I think trying, as I said before, trying to stay calm as much as we can.
00:18:18
Speaker
if we can remain calm in the moment, We don't only help our PDA calm down quicker, but we stop our anxiety from going up too high and the as calm as we can.
00:18:32
Speaker
and that will help build our resilience. I you know, when I can see my son's behaviour beginning to escalate and his his distress is beginning to escalate. Sometimes I'll just and I'll be in the room and I'll be in the room with him, but I will literally just close my eyes just for five seconds and deep and just have a couple of breaths just to remind myself, OK, I've got to stay calm here because actually then that helps me be more rational in what and be able to think my way out of his distressed behaviour.
00:19:05
Speaker
to stop it sort of channeling down into um' sort of, you know, where he goes into full meltdown. So certainly staying calm um and mark keeping my anxiety down will help build and my resilience and therefore deal with situations a lot easier.
00:19:23
Speaker
So it sounds a bit like co-regulation because they do pick up on our emotions. So if we're calm, and collected. and Also, it conveys that that's no big deal, you know, that, yeah, okay, yeah, whatever, and because essentially what you're being is your child's emotional breaks at that particular point in time.
00:19:40
Speaker
Yeah, definitely. Definitely. And I think
Daily Practices for Building Resilience
00:19:43
Speaker
a final tip I would would give new parents is believe in yourself. You know, you can do it. We can all do it.
00:19:52
Speaker
And even though it's hard, we can't, you know, believe in yourself and don't let other people sidetrack you. If you believe your child has, for example, has, a you know, if they haven't got a diagnosis yet and you'll believe your child has a PDA diagnosis, you've looked at the diagnostic criteria and you think, yep, they're ticking all those boxes.
00:20:12
Speaker
Don't let people put you off. Don't let, you know, and don't let people sidetrack you. You believe and you follow through in um in what you think because mum's instincts or parents instincts are usually ah Correct.
00:20:27
Speaker
And I think that, you know, the same therefore would go to, you know, and other parents or other family members maybe be that are trying to give you advice on how to parent your PDA. yeah If you know that strategy is not going to work, don't feel that you've got to, and you know, follow through with that strategy because actually, you know your child best. So believe in in yourself.
00:20:48
Speaker
I think. Yeah. And again, it's adopting that mindset that you know what's best for your child, nobody else. And just accepting that, yes, our family is different. You know, we may not be able to go on family holidays.
00:21:01
Speaker
and We may not be able to spend birthdays or celebrate special occasions like other families, but that's OK. and You know, we have to live our lives in a way that is the best for our family um and and will maintain the the mental and physical health of of everybody in that unit.
00:21:18
Speaker
Definitely. And it's okay to do things differently. You know, I think very often, I think as you know, when we have, or we have children, we have this, like before we have kids, we have this i idea, don't we, of what parenting is going to be like, and I'm going to do it this way and I'm going to do it that way. And then your child comes along and it's like, oh,
00:21:34
Speaker
okay, that's not working. Let's do something, you know, we can have to do things a bit differently. And I think to begin with, we have that all self blame coming in, don't we? But actually, we need to, we need to take a step back and think, no, I'm just doing what my parent, what my child needs.
00:21:49
Speaker
I'm parenting the way they need to be parented. So that's okay. And yeah it's all right to do things differently. OK, so we mentioned before about um you know single parenting or single carers.
00:22:01
Speaker
um
Support for Single Parents
00:22:02
Speaker
Any top tips for people who find themselves in that situation, Rachel, and perhaps haven't got the luxury of you know a partner or somebody else that the child trusts? Yes, of course. Yeah. So, you know, obviously, if you're single parenting, then, you know, you have the ultimate responsibility on your own for that for that child. But always remember that there are people there to help and to support you. So I mentioned earlier about and you know, family and friends, you know, don't be afraid to call, ah you know, to call on people to help. You know, what i you know ah personally, I've got um a fabulous neighbour who all I've got to do is a quick quick text, a quick phone call and just say, can you come up?
00:22:43
Speaker
That's all I have to say. And she's here. She's here. And she'll even if it is just to be in the house, to be with my PDA or just to just to talk me through something on a bottle with a bottle of wine.
00:22:56
Speaker
That is is amazing. You know, it just helps. And also, you know, it can be very isolating, can't it, to parent a PDA. yeah So. You know, if you're doing it on your own, reach out to support groups. There are some fabulous and PDA specific support groups because very often what I certainly found and was that if I went sort of to and sort of general, you know, so send support groups or if I went to autism specific support groups,
00:23:28
Speaker
A lot of the what the the strategies and and things that other parents would tell me work for their child. i was like, well that's not going to work for mine. and But actually, then when I came across the PDA specific support group, then that it was great because it was just other parents that got it.
00:23:43
Speaker
You know, they understood. They knew what I was on about when I was you know so saying was no way I can use a visual. That's not going to work. um And they understood. So. reaching out to people. Don't be afraid to reach out, whether it be an in-person support group or the multiple, you know, online support groups that are out there, you know, reach out to people in those support groups. it You know, it really helps. and The PDA Society's got and some Facebook groups specifically for parents. So have a look at those. Reach out to people in those groups because you know then that there's people there that are going to get
00:24:21
Speaker
the you know what you're going through and even if it is that you just need to offload if you're reaching out for help or support i have found that those sort of groups are fantastic sources of support yeah so it's about sharing the load really i guess um you know we all want to be the superhero and but you know you don't have to do it alone um there is that expression a problem shared is a problem halved um so i'm sure the same principle would go when it comes to um thinking about our well-being as well So do reach out. Don't feel that you have to tackle everything on your own. Definitely.
00:24:54
Speaker
Yeah. um OK, well, thank you so much, Rachel, for what has been a really insightful and discussion. um I've really enjoyed it and picked up um some certainly some new information.
00:25:06
Speaker
um If
Additional Resources and Subscription Information
00:25:07
Speaker
you want to hear more, we do have um Deeper Dive podcasts, which are available via subscription. um If you want to find out more, please do visit the PDA Society website.
00:25:18
Speaker
And again, thank you, Rachel. Thank you very much. Yeah, thoroughly enjoyed it. Thank you very much for having me. 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.
00:25:32
Speaker
Sponsors of our training club make it possible for us to create and put out this podcast for everyone for free. As a thank you, they get free access to all recordings and self-guided training on our training hub.
00:25:43
Speaker
Thank you subscribers for your generosity. If you'd like to become a subscriber, there's a link in our show notes.