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Making the Loo Less Stressful: Gentle Approaches for PDA and Toileting
672 Plays1 month ago
In this episode, Rachel from the PDA Society is joined by Tabitha Poole, an occupational therapist from the charity ERIC, to explore a topic that many PDA families describe as a common challenge, toileting.
Tabby shares her professional insight into why toileting can be difficult for PDA children and young people, and how these challenges are often linked to anxiety, demand sensitivity, sensory differences and the need for autonomy. Rachel and Tabby discuss common experiences such as refusal, avoidance, accidents, fear of the toilet, and the impact of shame and pressure.
Part 1 focuses on understanding. It explores what might be underneath toileting difficulties, why traditional approaches can make things harder, and how reframing toileting as a nervous system and safety issue can lead to more compassionate and effective support.
Key Themes
- Why toileting can be particularly difficult for PDA children
- Anxiety, demand sensitivity and the need for autonomy
- The role of sensory sensitivities and interoception
- How pressure, shame and urgency can increase distress
- Reframing toileting difficulties through understanding and safety
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” 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 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/
Guest links:
- @toilettimewithtabby
- @continencehub
- @eric_charity
- www.tabithapoole.com
- www.continencehub.com
https://eric.org.uk/advice-about-bladders-bowels-and-toileting-for-children-with-additional-needs-2/
https://eric.org.uk/potty-training/children-additional-needs/
https://eric.org.uk/children-with-additional-needs/toileting-support-for-autistic-children/
https://eric.org.uk/interoception-and-toileting/
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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 yourself, family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
Toileting Issues in PDA Children
00:00:38
Speaker
Hello, my name is Rachel and I'm your host for this podcast. Today we're going be looking at the topic of toileting, which parents of PDA is often tell us is an issue they face on an ongoing basis. So whether it's how to talk to toilet train your PDA child that you're struggling with or how to stop them soiling, I'm sure that this podcast will give you some valuable insights.
00:01:01
Speaker
So I'm delighted to be joined this week by our guest speaker, Tabitha Poole from the chat the charity, Eric. So welcome to our podcast, Tabby. Would you like to say a few words about yourself and what you do and what Eric as a charity does?
00:01:15
Speaker
Absolutely. Thank you so much for having me. I'm so excited. This is one of my favorite topics. Of course, I love to talk about poo. So I'm an occupational therapist by trade, which means that I help children and families do the things that they need to do in their daily life. And a while ago, maybe about 10 years ago, i got really obsessed with poo, you know, really into it. And I worked with a wonderful continents team and this journey has taken me so far. so Since then, i have developed my own multidisciplinary continence team in Australia where we see clients. I also offer a consulting business in the US where I spend some of my time as well, helping children and families with all things pee-poo in the potty. And i am also an Eric trainer, which is one of my absolute favorite roles where I get to deliver training via Zoom, much like this. and give it advice and support to healthcare professionals, help a lot of and NHS staff and and other people all over the world understand what's a healthy bladder, what's a healthy bowel, how do we help children achieve healthy bladders and bowels, how do we help them get their weaves and poos in the toilet, and how do we help them with things like night wetting and toilet anxiety.
00:02:31
Speaker
And even developing their sense of interception, which I'm sure we're going to chat about a little bit today, so I won't go too far into it just yet. And ERIC is such a wonderful organization.
ERIC's Support for Toileting Challenges
00:02:41
Speaker
So ERIC is a children's bowel and bladder charity based in the UK, but they help children all over the world. They have a helpline that is accessible to parents and clinicians. If you have any questions where you're not too sure where to go, they have wonderful resources on their website. That is just a wealth of information.
00:03:03
Speaker
Some geared towards professionals. They have clinical pathways to follow. They also have resources geared more towards parents, schools, educators, daycare workers. And so there's really a little something for everybody.
00:03:17
Speaker
They provide advice and support on daytime continence issues, nighttime continence issues, real medically complex issues and issues where maybe anxiety or neurodevelopmental issues are coming up as well.
00:03:33
Speaker
So they are just amazing and I really enjoy working with them. oh I bet. Yes, and I bet it's great varied work as well, isn't it? So that' that's brilliant. It is, it is.
00:03:44
Speaker
Fabulous. So like I guess a great place to start then would be and what is considered a typical age range for a child to be toilet trained? And at what point, I guess, then would we start to explore and and if there's any underlying issues, if we feel that you know our child's not toilet trained at the point that they should be toilet trained? Because I think parents are often they're often under pressure a lot, aren't they? you know To say, oh, you know, before I know in the UK, before your child starts school, they've got to be toilet trained and they've got to do X, Y, Z. But actually, at what point, you know, when is what is normal, if there is a normal, for a child to be toilet trained? And when should parents start looking if there are underlying issues?
Factors Affecting Toilet Training - Is it Environmental or Sensory?
00:04:29
Speaker
This is a great question because I think it's really topical right now. If we think about over time, there really is a change in what we considered normal for an age of a child to be toilet trained. And if you go back, say 50, 60 years, the average age of a child being considered toilet trained was around 18 months.
00:04:52
Speaker
And now in the UK, the average age that children achieve toilet training is probably around three, three and a half years. So there's been a huge change to that over the past 50 years. And this is not just in the UK. you know, I work in Australia, I work in the US, and this is a very common thing that's happening in, i would say most developed countries. It is...
00:05:15
Speaker
a lot to do with the environmental factors. Children themselves, their bowels and bladders haven't essentially changed much in the last 50 years. They haven't grown a new organ or anything different like that. um But the way that we parent children, the way we raise children,
00:05:31
Speaker
The demands placed on parents, the demands placed on children have changed a huge amount in that time. Now, if we think about it from a standpoint of anatomy and physiology, children by the age of five, really their bowel and bladder should be mature enough that they're not having any more accidents during the day or potentially night. Now, some children are still going to experience night wetting after this time.
00:05:55
Speaker
And statistically, that tells us that it is still really common. But if we are not seeing if we're not seeing any success at nighttime by the age of five, we really want to be seeking help because around, maybe not so much five, but if we think around six, seven, eight, nine, those ages, that's when children are starting to be sleepovers, school camps. all of those sort of things. So developmentally, we really want to get kids ready for that. Now, if we talk about during the daytime, i know you mentioned school as being a real a real kind of hotspot time for parents to be expected to get their kids potty trained or toilet trained. Now, what we're finding is that more and more,
00:06:38
Speaker
toilet training is really seen as sort of a short term strategy that we're going to do. So, okay my child's ready to start school this summer. We're in the summer holidays.
00:06:50
Speaker
My expectation might be that I can completely get them toilet trained from full-time nappies to full-time underwear within that time. and And, you know, at the beginning of the school holidays that know six, eight, however long the school holidays weeks goes for seems like an adequate amount of time.
00:07:07
Speaker
However, when we think about toileting as a developmental skill, like I really like to think about it, I think about it in context of maybe learning to eat solid food or learning to walk for the first time. We'd never sit a six-month-old baby in a high chair and whack a whackcker steak in front of them and say, hey, go for gold. Like in three days, you should have this steak down, right? but Here's your knife and fork.
00:07:34
Speaker
No, over many, many years, we slowly introduce different solid foods. We give them carrot sticks to mouth, we give them purees, we give them porridge, we give them soft foods. We let them explore that food with their hands and get really messy, as as difficult as that might be for us sometimes. And similarly with walking, we don't expect a child to just pop up one day and start running around, although sometimes it does feel like that kind of happens. We get them scooting along the couch, we get them having that little wobble for a long time before they're ready to take their first steps. I like to think of toileting in the same way.
00:08:11
Speaker
if we approach toileting as more of a developmental skill and start thinking about this from the time the child is even born, then we generally have a much smoother transition into the the toilet learning stage that we think of as potty training. So I really encourage families to think about this from day dot.
00:08:33
Speaker
Now i don't work with many babies, you know, under the age of three months because they scare me a little bit. They don't have head control. i don't like that. But once they hit, you know once they hit a point where they do have head control, encouraging them to sit on a little potty, even if nothing comes out. Maybe during nappy change times, we have the potty just close by. Maybe they're not even sitting on it, but we talk about it. Maybe we play games and and get their teddies involved and and talk about wee and poo in a really positive and normal way, because these are things that we all experience in everyday life.
00:09:06
Speaker
So I've given you a really long winded answer to this. I don't think there's any one fat size fits all strategy, but we know that children have the ability to be, um you know, potty trained or, or kind of continent from a very young age from 18 months. We've seen that, you know, 50 years ago and that's still possible. But if we don't start early, then it's not going to happen.
00:09:28
Speaker
Yeah, yeah, honestly, that analogy it was just making me laugh then about the, yeah when you said about the food, that's just so right, isn't it? You know, it's like we just wouldn't expect them to eat something solid straight off, so why would we? the toilet and i And I was, I'll admit, I was one of those mums that went, right, summer holidays, we're going to do it, it's going happen, and it didn't.
00:09:50
Speaker
So it's really tough. And I definitely, i look, I have seen children that, that essentially toilet train themselves, right? They wake up one day, they decide they're not wearing nappies anymore. They're wearing underwear and off they go and they're off and racing. But this is definitely,
00:10:06
Speaker
this is the men minority of children. This is not the majority of the children. And so yeah, having a, like a three day approach or a week approach even is not always realistic for some families. And I think, you know, we need to help them understand that because it really sets them up for, for a lot of stress otherwise.
00:10:24
Speaker
Yeah. Yeah, definitely. So, so when we are, you know, sort of helping them develop the skills, all these range of skills that they need to be able to use a toilet,
00:10:36
Speaker
How might sensory sensitivities affect maybe a child's willingness to use the toilet or to sit on a potty or to sit sit on a toilet? You know, things like, um you know, that the texture of the toilet seat, for example, or the flushing sound of the toilet. and ah Do those things affect some children's ability to be able to um use the toilet or the potty?
00:11:03
Speaker
Absolutely. The toilet or bathroom space is such a sensory rich space. And as a child who was terrified of flushing the toilet myself, I could i still have memories of flushing the toilet and running out of that room as fast as possible because i you know, I was really scared of that.
00:11:22
Speaker
And i you know, I was a typically developing child. I still had issues with that. So that tells us that our children who have neurodiversity, our children who have a PDA profile, who maybe have more sensory sensitivities than a typically developing child might, then of course they're going to struggle in an environment that could be so sensory rich. Especially like you said, when there's loud sounds, when there's a lot of echo, often bathrooms are just not designed for children either. They're designed for adults and the toilets are too high. The sink is too high. The everything, you know, it depends depends on the style of the house, but you know, more modern homes that I've been in, everything's white on white on white, which can be really challenging from a visual perspective. And there's also a lot of smells, you know, there's obviously we and poo smell, especially if your older brother just got out of the toilet and you think, I'm not going in there.
00:12:21
Speaker
i know what he does in the toilet, but maybe maybe even the smell of cleaning products are really overwhelming for your child. And maybe the smell of the air freshener might be really overwhelming for your child. Or maybe it's just not a smell that they've chosen and not a smell that they have any control over. And so that can be really challenging ah for kids with a PDA profile as well.
00:12:43
Speaker
We can also think about the temperature. So we're just talking just before about the heat wave. The toilet is guaranteed either the hottest or the coldest room of your house, depending on the seasons. It's always the way.
00:12:56
Speaker
And we don't really think about keeping ourselves super comfortable because most of the time we kind of want to get in and out, do our business and, you know, be on our way pretty quickly. But when we're trying to encourage children to relax, to allow their bladder and bowel to empty really effectively on the toilet, they might need to spend a little bit more time there. So having a little handheld fan or having a little heat pack ah along with them can, these little things can make such a huge difference.
00:13:24
Speaker
It can also be a space where the child doesn't have much control over what's happening to them. And from a PDA perspective, that is that can be really challenging. Maybe the bathroom also has that connotation of, I have to brush my hair, brush it brush my teeth, wash my face, get in the bath, you know wash my body, dry my body, now I've got to put clothes on. There's a huge number of demands in the bathroom.
00:13:49
Speaker
Most of the time, we're not just in there for fun. Although i have seen families that make the bathroom such a fun and pleasant environment with really fun bath time activities and beautiful bath time toys and and things that just make that space very inviting and allow that child to have more control over their routine in that space as well. And that makes a huge difference. But if your your toilet is in your bathroom and your child walks in there and that they know usually when they're in there, they have to brush their teeth and and do their hair and and things that maybe they don't enjoy or maybe they don't have much control over, then those those visual triggers can maybe put the child off even wanting to try this activity.
00:14:30
Speaker
Definitely, yeah.
The Role of Autonomy in Toilet Training for PDA
00:14:31
Speaker
I know, certainly with my PDA, it was the whole, well, it still partly is, we still have issues, but it was the whole thing around the routine. It wasn't just the going to the toilet bit, it was the washing the hands. He didn't like the washing the hands, then he didn't like the drying the hands, and he didn't like various aspects of what else he had to do when he was in there.
00:14:55
Speaker
and So, yeah, I definitely think that, you know, it In your opinion, then in what to what extent does this anxiety around toileting, how much do those routines contribute to that anxiety? For for children like PDAs whose anxiety is generally high anyway, how much do these routines around the toilet, rather than just the physical aspect of going to the loo, how much does that contribute to their reluctance?
00:15:24
Speaker
I think that's a really good point that you made. It's not just getting wheeze and poos in the toilet. It's everything around that. So there's more than 40 different steps that we have to do in order to use the toilet successfully. So things like,
00:15:40
Speaker
pulling down our pants, pulling down our underwear, getting up onto the toilet, obviously doing a wee and poo, wiping, checking the paper, of it you know, all the washing your hands stuff that comes afterwards, the dressing, and even the internal demands that your body is placing on you. So your body is screaming at you and telling you that you need to do a wee and a poo right now. which can be a real challenge for a lot of our PDA kids who struggle with demands being placed on them, whether that be an external demand or an internal demand. And when we get the combination of a parent or a caregiver or a teacher or someone um making a demand, you know, when I say making a demand, I don't necessarily mean you look you will go to the toilet right now, but even a suggestion like I wonder if you want to go to the toilet can be
00:16:28
Speaker
It's perceived as a demand for a PDA kid because they're really smart and they know that the only reason you're saying that is because you want me to do that. So they kind of, they know this, right? We know they know. yeah um and And so then that coupled with that internal demand then can just be really overwhelming for this for this client. population. So having, ah sometimes having a really clear division of responsibilities chosen, you know, in conjunction. So the parent and child come together and actually, know, I've done this with pictures, with visuals, or even just writing the words down, thinking about, okay, what's my job and what's mom's job. And sometimes that can be, um sometimes that can change as well. So I've had some kids where we almost have to do this on a day to day basis. So today, you know, the child's job is working because they're feeling really good and regulated and like they can handle it. But tomorrow that might not be the case. And so regularly checking in with your child and and understanding how
00:17:25
Speaker
the general level of regulation and where that are where they're at. But of course, this can change throughout the day as well. We've all had days where we started out the day great and by the end of the day, we're super stressed or vice versa.
00:17:37
Speaker
We started out the day thinking it was going to be really challenging and by the end of the day, we actually feel nice and calm and relaxed. so keeping keeping that in mind and and really matching the demand to the level of regulation. But of course, that's very difficult for internal demands. It's hard to regulate our internal demands.
00:17:54
Speaker
Yeah, definitely. And I think, you know, that that number that you gave, that the 40 different aspects of going to the toilet, you know, 40 different demands, that's an awful lot. And anybody that's a parent of a PDA and knows that that's probably enough to send their child into overwhelm. So therefore breaking it up, I know for us, we took the whole hand washing out of it. that That's the only way we could get him to go to the toilet was to remove the demand to hand wash. And we'd sort of crap his hands with a wet wipe soon after, obviously. But That's it. Slap some gel on. Yeah, exactly. As we're talking, distractions, as we know, wiping the hands. But it was that it was that removal of that aspect meant that it made the demand of going to the toilet a little bit easier for him. So.
00:18:39
Speaker
On that basis then, what you know how can this need for autonomy and control, how you know how does that how can we throw that into the mix for toilet training, a PDA, yeah how what aspects can we give them some control of? You do you mentioned a little bit ah earlier about um checking in with them and making sure that they're right and sharing demands. Are there any other tips that you could give us around that of how we can give them some control? and over using the toilet.
00:19:11
Speaker
Absolutely. So whilst I said it's tough to regulate those internal demands because if your bladder is full, your bladder is full. There's there's a not too much we can do about that. However, improving children's interoceptive awareness, so improving their ability to understand what their body is demanding from them and and also the why. I find with all of the PDA kiddos that I work with, giving them the why is is so important. Well, almost all of them. I've got a a few that are not too not too interested, um but for the vast majority of kids with a PDA profile that I work with ah yeah I mean, first of all, they're some of the smartest kids I've come across, so I can't trick them. No, I can't rely on just pulling the wool over their eyes. It's not possible. Their IQs are higher than mine, they're smarter than me. So I actually need to bring them along the journey. I need to, and and kind of spark their interest because once they're interested, oh my goodness, try and stop them. And once they're where they're into something. So I really like to work on that interoceptive awareness. So having a bit of a scale, understanding when my bladder is empty versus full, but then the nuance in between.
00:20:22
Speaker
So what it feels like when my bal bladder is maybe 50% full or it's just they need to go a little bit. Maybe you have a shared language around this. You've got ah a tingle, you're not busting yet. And this might give your child a bit more choice around when they actually go. If you catch your bladder when it's an eight out of 10,
00:20:41
Speaker
then you can decide if you're going to finish playing this game, you're going to finish having your snack, you're going to, or you're going actually go to the toilet and then you're going to come back to those things. Whereas if your bladder is a 10 out of 10 busting, that wee is going to come out whether you like it or not. And that can be really, really challenging because then your body is, is just not doing what you'd like it to. And that's um for for anyone, not just kids with a PDA profile, that's really, really scary and ah dysregulating. So helping children understand what's happening and what those cues are and and getting those early warning signs in their body can be really powerful. And then educating them on their bowel and bladder and their digestive system and urinary system, how this works and why your body is doing this, why it's really important to clean these waste products out and how that helps us to function and and be really healthy humans. So I think for the internal demands, I spend a lot of time on education and and talk about, know,
00:21:37
Speaker
Talk about how the body works a huge amount. And then I also really want to help families, like I said, have those really open dialogues with their child with their children. And also to think about most of the time when we think about toilet training or or toilet learning or getting this process started. Most of the time it's when the parent is ready. That's not always the case. Sometimes the child, like I said, is its just really ready to go, but then that's ah that's a wonderful thing to happen. But most of the time we're thinking like, okay, school's coming up, I need to get them ready. And so thinking about if we can start earlier and if we can start introducing these things slowly, then we might start to get some cues as to what parts my child is gonna have no problems with and what parts my child is really gonna struggle with. And then we can be a lot more gentle and slow about how we approach those things. And often then the parent will experience less anxiety around it. If you've got this six week deadline and school's looming and the parent's feeling really stressed about it, then these children are are going to really pick up on this. And so sometimes that's when those real arguments start to happen.
00:22:48
Speaker
And it's one of the toughest things. It is. It is. It is difficult, isn't it? But I mean, that I think that's a great idea to empower the child, even as as a two-year-old, empowering them to, you know, you the potties there, they've got the option to use it if they want to, but that's for a PDA, then that's giving them some control. they don't want to, it's fine because there's no time pressure on us and we'll go with the flow type thing. But I also love that idea that you mentioned earlier about, you know,
00:23:17
Speaker
that teaching them, and again, we don't do this, do we, with kids? We don't talk about wee and poo with them or very often at all. It's just not what parents do. But we should do, because be your idea about teaching them, oh, well, my black, you know, my...
00:23:34
Speaker
bladder might be 50% full I could do a bit of a wee now but I might not but it's my choice so it's a choice thing before it becomes oh my god I've got to go and then it's not that the control's gone isn't it so that's brilliant idea I absolutely i love that yeah I'm going try that with my I'm going to try that with my PTA actually it Yeah, it is. it's It's such a powerful strategy. And of course, it's, you know, like I said, it's it's like a lot of these things. They are easier said than done. And they do take time. Interceptive awareness is a really challenging skill. So I am a fully fledged adult. I'm pretty well regulated. I teach this stuff for a living. And still every so often I will end up really hangry because I've forgotten to eat. I've missed all my body's early warning signs that I'm hungry. And now I am horrendous to be around and someone needs to like shove a stick as far in my face, quick smart. And so if I'm able to miss these cues on occasion, then of course our children that have a lot of demands placed on them that are dysregulated parents that are really stressed around them, then of course they're going to miss out on these cues as well. I think as well starting later toileting in general for some children
00:24:45
Speaker
can
Routines and Transitions in Successful Toileting
00:24:46
Speaker
be a good thing. But for the vast majority of children, if we don't even start talking about these things, or like you said, have a potty around to talk about what it is and what it's for. You know, most children come to the toilet with you at some point in your life. If you're a parent, that's just how it is. It's what we do. Yeah, it's what they do. They sit on the floor. But maybe whilst they're in there, maybe talk about what we're doing.
00:25:07
Speaker
Maybe talking about mum's doing a wee right now and the wee's coming from her bladder. It's a, it's a, nice big balloon shaped organ and you know even if though your child's too you'd be amazed what they can take in and and what they can learn so starting that really early and if we think about routines as well a lot of the PDA kiddos that I work with they really thrive on routine once it's routine So when they have that predictability, they know what's coming up. They have some choices, but but things flow. They don't have to actively think about it too much. It's in their muscle memory.
00:25:45
Speaker
Then they do really well with morning routines, afternoon routines. But it has to be routine. And if you've got a five-year-old, four-year-old, five-year-old, six-year-old even that has never sat on a toilet, you're trying to build a huge new routine and you're trying to wedge it into an existing routine. And so having having a longer time in nappies or having a longer time not using the toilet then means that that's not so routine for them. And so we do have to really take time in order to build that routine in a really safe and safe and and good way so the child feels like they're along for the journey, they're not being dragged.
00:26:25
Speaker
Yeah, exactly. And it's help it's helping them feel that they've got they've got the choice to do it. It's their decision to go to the toilet, isn't it? Yeah. Okay, in another issue that we hear a lot from and parents that we support and is about transitions. So, it you know, so and again, my my my PDA does this as well. He struggles to stop playing or doing what they're doing to go to the toilet. So, and, you know, this can then obviously be particularly difficult for PDA children because...
00:26:58
Speaker
It might be that doesn't want to have that transition of stop playing to go, so puts it off, puts it off, puts it off. And then when they really, really need to go, it's a huge demand and then they can't process the demand quick enough and then we have an accident. So what strategies could you, have you got any strategies that could help with that about how transitions can be particularly difficult for PDAs and toileting?
00:27:24
Speaker
Absolutely. i mean, transitions are hard for all of us. Sometimes how many of us have put off having a shower because it's it's too cold. And then once you get in the shower, you can't get out.
00:27:35
Speaker
or Or how many of us decide that we're going to be really good tonight and we get into bed nice and early, everything's done. and then we scroll on our phone for an hour or two and we think, oh, well, I've just blown that. And a lot of the time that's about that transition. It's about starting something new or moving on to the next thing. So, Again, i think it's something that we we really acknowledge that is tough for children, especially children with neurodiversity, especially for PDA kids, but it's actually something that is difficult universally. And so we acknowledge that sometimes it makes it a little bit more, oh, okay, no wonder it's tough. and And sometimes that's the first step of helping families to feel like ha okay, it's not just me that's struggling with this.
00:28:17
Speaker
It's actually a difficult skill and we are going to have to work hard to get there. So again, I would take it back to that introspective awareness. A lot of the time when we're really focused on what we're doing, and this is when I get hangry because I'm you know, in ah in a rabbit hole of something, you're really interested in something, then it's very easy to ignore those internal cues. So having a practice of doing a little body scan or a little check-in, working that into something play-based, especially some kind of movement activity, Sometimes even modifying our position and and using that time to kind of quickly check in with our body can really help PDA kids to assess in that moment what they might need and make a bit of a decision of, boom if I go to the toilet now, then i can get back ah to playing or i actually want to go and play outside and and that might help with that transition. So almost kind of using it as a bit of a transition. But again, going back to the why of what we're what we're doing, and essentially trying to preempt some of those routines. So if we already have really well established routines in the morning and the evening and around meal times, then trying to hang toileting onto some of those routines. Again, sort of looking at the the whole demand profile of that of that routine. If we add in something else, is is that going to make it too much? Do we need to drop something else off? I loved your idea of just dropping that hand washing off. Like, do you know what? That'll come. We'll get that later. Right now, what we're focusing on is this. And I often bring kids along for the journey. I will tell them really explicitly. You don't do your ways in freezing the toilet just now, but I bet you one day you will. And I'm going to help you along that journey. I don't expect you to do it today. i don't expect you to do it tomorrow. And you're going to do it when you're ready.
00:30:04
Speaker
And sometimes even just making that acknowledgement and having children realize like, oh, she's not going to try and trick me into it, or she's not going to just suddenly make me, make me do something can help children to take a bit of a step back and realize that they are in control of this process. Now, of course that sometimes it means the process will take longer, but that's okay. Better that we get there in a year than we don't get there in three years.
00:30:31
Speaker
Yeah, yeah, definitely. And I love that idea of that body scan, so particularly if they're busy doing other things. You can do you can almost role model a body scan, can't you? You can so touch start talking aloud about yourself and then and asking them, what do your but what does your body feel like to help that possible transition then to the toilet? But they are still in firm control, which is great. So what about such a great idea? i love the fact that, yeah, you verbalize it out. And i I think the fact that you model it and you actually do it for yourself. So there's an outcome, like actually do that body scan, check in with yourself, check in with your own intraceptive awareness and decide like, oh, I am a hungry. Oh, I do really need some water. Oh, I need to move my body. I need to change my position and show children that that we're constantly working on this as well. This is lifelong learning. It's not something that we're just going to get and and then we have it.
00:31:22
Speaker
Oh, definitely. I mean, i I do that body scanning quite a lot with my my PDA, yeah particularly before we're going to go out. So as we call it, but mum does her just in case wheeze. And so when I verbalise what I'm doing, I'm checking, do I need the load? Do I not need the load? I'm going to go just in case. But I never ask him, but then I can see him thinking and he's I can tell he's doing exactly the same thing because and I've learnt the hard way that, you know, but the minute we've gone out of the car, then he's like, I need to wheeze. But but some yeah, it is important to do, but to try to help those transitions, but let them have that control as well. So yeah. yeah so
00:32:02
Speaker
And sometimes it's during the transition that we notice those things. Like I'll be sitting down at my desk and I'll feel great. The moment I stand up, up I go, oh, I do feel a little something in my bladder and I think I do need to wee. And it's not until I've i've moved my body and I've actually changed my activity And so i think, yeah, not, I mean, obviously not pulling children away from preferred activities, but sort of having this as just a family thing. This is every, this is everyone in the families. It's just what we do.
00:32:29
Speaker
yeah Yeah, exactly. And then it's normal then, isn't it? It it it doesn't feel like it did it's or the whole family does it. And therefore it's just, it's just a natural thing to do. so what a great practice.
Overcoming Negative Toileting Experiences
00:32:44
Speaker
So for children then that maybe might have had previous negative experience around the toilet, and so maybe for children that suffer with constipation or pain when they're going to the toilet, or maybe that they they've been over pressured by somebody else before, maybe at nursery, they've been like constantly asked to go to the toilet. Can that then, those negative experiences, lead to ongoing toilet avoidance in PDA children?
00:33:14
Speaker
Absolutely. I've seen this exact these exact scenarios that you've described for children with and without a PDA profile. I think for children with a pred PDA profile, it can be even more challenging because of because of their demand avoidance and because of the way that their nervous system processes those demands and and responds to those demands. And it it can be such a bigger, such a big response. And so I think For these children, we really want to first focus on that feeling and sense of safety. Now, if something like constipation has been an issue in the past, then we definitely want to just pause all toileting most of the time and focus on getting the bowels working really well and really effectively. And that really should be the primary focus.
00:34:08
Speaker
Of course, we a lot of kids and families can handle so much more and they can work on constipation and toileting at the same time, but I certainly couldn't. Like I know for myself, I would just, I would have to focus on one thing and then we can move on to the next, especially bowel issues because bowel issues affect not only our bowel, but that are bladder functioning so much. A lot of the time when children come to me and have issues with night wetting or daytime wee accidents, the underlying cause is that constipation, their bowel is pushing on their bladder.
00:34:40
Speaker
and not allowing their bladder the space to be able to fill up, confusing those neural signals going up to the brain, maybe not the children's, the child is not getting those signals that they they have a full bowel or bladder. And then if you're having wheeze and poos come out when you don't want them to, or you don't expect them to, that can be really off-putting and dysregulating pool for anyone, but especially a child where control and autonomy over their body and their environment is so important for them. So i think have it's okay it's okay to pause things. If you have a suspicion that a child has really experienced something, some trauma around this, whether it was the intent of the adult or not, we have to acknowledge that it was traumatic for that child, even if it was the gentlest approach in the world, even if it was the nicest, kindest teacher, just suggesting they go and sit on the toilet and with all well intentions, we need to acknowledge that for that child, that was an unpleasant and and challenging experience and that it's caused their nervous system to perceive this activity as unsafe. So we really need to take a step back
00:35:50
Speaker
It's okay to pause toileting activities. It's okay to then focus on helping that child feel safe and regulated generally in that environment wherever it is. So we might just start with just helping them feel safe and regulated at school or just helping them feel safe and regulated at nursery or or at home or grandma's house or wherever this has happened. And of course it can kind of transfer over because most toilets look the same. And so just because something's happened at school doesn't mean the home toilet's going to be all hunky dory. So we need to first work work on regulation, get that nervous system functioning as best we can, getting them from their sympathetic fight, flight, freeze, all the rest of the Fs back to our sympathetic, which is actually our rest and digest state for our nervous system. That's when we feel calm. That's when we're ready to learn. And that's where the majority of our digestion happens as well. So it's okay to pause, take it back to baseline, and then we can start to slowly reintroduce some of these things. And of course the topic of the day is giving the child a choice. So figuring out, okay,
00:36:54
Speaker
Which bathrooms do you feel safe in? What activities do you want to do in the bathroom? What things are we going to bring in there? um You know, which bathroom in the house are we using? Which bathroom in the school are we using? Are we using the regular cubicle? Are we finding an accessible toilet? Do we get to go up to the office or use the teacher's toilet, which might feel like a bit of a treat for some kids.
00:37:14
Speaker
Some kids aren't going like that, but some kids are going to really get a kick out of that. So again, offering choice, focusing on regulation and moving at the child's pace. Oh, definitely. And I think that the bit you said then about the and explaining why these things might have happened and the acknowledging that it was painful or whatever it all traumatic or whatever it might be, I think it's something that probably most of us overlook. And we think, OK, you know, yeah, you did have constipation last week, be not constipated now. So it's all OK. But In our heads, that makes sense, but it won't make any sense at all for the PDA. it will it you know That trauma response is locked in, isn't it? It's there and that memory is there and that talking about it is how we help them overcome it.
00:37:59
Speaker
So yeah, that's brilliant. Absolutely. Yeah, and educating the child on the constipation cycle and making sure that the child understands what's happened in their body and if they are on a laxative regime, why they're taking this medication, how the medication works, what it's what outcomes it's gonna lead to. It's gonna lead to soft poos that are very easy to pass and are not painful. So that the child knows what's what's happening and and we're really bringing them and them along in that journey. And another thing I sort of forgot to mention, but it's so, so, so important is working on repairing that relationship. So all of the PDA kiddos that I have worked with, relationship is so important and taking the time to truly develop a ah good relationship with that child and to acknowledge when it's been busted. You know, I bust the relationship with my clients,
00:38:51
Speaker
Not all the time, but it it happens. You know, I think we've got this great session planned and actually it's not what they need and it's not being good for them. And I need to acknowledge the activities I chose out were not right for you. And I can see that this has caused you a lot of distress. I'm really sorry that, you know, I i played a part in that. And so what are we going to do together? How are we going to figure out what we're going to do next time together. Do we need to take a little bit of a break? Do we need to see each other, stick keep seeing each other regularly? do we need to give more choice and control back to that child? You know, sometimes that involves me getting right out of a clinic setting or um or maybe, you know, having a one-on-one session with their family and actually going, okay, I busted that. I'm i'm really sorry. It happens. How do we how do we move on?
00:39:37
Speaker
Yeah, yeah, exactly. And that acknowledgement helps the move on process, doesn't it? Yeah, definitely.
Creating a Stress-Free Bathroom Environment
00:39:43
Speaker
okay so are there any environmental adapt adaptations then that might help reduce the stress? we We touched a little bit on the sensory stuff earlier, but is there anything that parents could actively do that might help this stress and demand around toileting for PDA children?
00:40:03
Speaker
Absolutely. i know we spoke a little bit about the sensory, but in terms of things that you can actually do to the toilet environment, sometimes it feels a little bit minimal. You know, whether you have a big room or a small room, that's probably not easily changeable. Whether you have a lot of white paint and you're renting, so you can't just go and put wallpaper up or or start painting, you know, we've got to work in the constraints that we have. So I do really love good toilet, like makeover, putting some like fairy lights or a galaxy light in there, having something that the child really likes. And if the child is that way in mind, if they're creative, if they like decorating, then get them involved. What do they want in there? Maybe they can choose out a couple of special items that we can buy, or maybe they can choose some items that you already have, or, you know, think about and think about different sensory things. So visual, can we, can they choose out their own, you know air freshener or essential oil that they want in there and that's the new scent of the toilet the kid gets to choose do they get to choose a new one each week or do we want to keep it really consistent depending on that child I usually find um consistent but somewhat flexible routines generally work best for this population but of course that's a
00:41:17
Speaker
um Not throwing everybody in together. Of course, ah ah every every child is an individual, but as a population, i find having things that are really consistent, but allowing some flexibility in there makes a huge difference with the toileting routine.
00:41:33
Speaker
um I also really like thinking about, you know, preferences in terms of company versus privacy. Like, do you want mom in there or do you actually want dad to get out?
00:41:44
Speaker
Or is it okay if your little sister comes in and and wants to have a chat to you? Or is it really important that the family keep little sis away while big brother's sitting on the toilet? Like what what might that routine look like and and allow the child to have a lot of say in that. And then of course, giving them real choices on the decoration. Just before I move on, I had a a wonderful family I worked with recently and they had two children, the older children, older child had a PDA profile and the older child actually decorated the toilet environment for the younger child because the younger child's favorite thing was Pokemon and the older child, you know, wasn't actually that bust on Pokemon, but really wanted to do this for their brother. And that
00:42:28
Speaker
doing something for someone else and seeing their little brother's excitement when they walked into that room actually helped that child have a much more positive relationship with the toilet space so we could actually get some stuff happening. we actually got them in there in the first place, which is really exciting. um And I think that kind of lent leads back to another another trait that I've noticed generally, not for all kids, but a lot of kids with a PDA profile, is they're super empathic and they feel deeply And they actually feel what others are feeling like so much more than i think the typical population. And so harnessing that is such a such a wonderful thing to do.
00:43:07
Speaker
That's great. now I love that example. That's brilliant. so Yeah, it was a lot of fun. Yeah, yeah, I bet. Yeah. So I think m just to round off this half of the the podcast, it's just any further advice for parents? A lot of parents struggle, I think, to get that balance. And we talk quite a lot about balance and when we're talking about PDA, but particularly the balance of support with versus the balance of demand. How can... how do parents know where's right to pitch it when you're like, you know, you're encouraging, but you're not, you know, um being overly encouraging so that we don't, it doesn't turn into a demand. And then, but also that we don't want it being perceived as that pressure. How, how can they, any advice on how they can get that balance right?
Balancing Encouragement and Pressure in Toileting
00:43:55
Speaker
Yeah, that balance is is, really tough. And I think, Firstly, we've done a lot of acknowledging today. Firstly, to acknowledge that you're not always going to get it right and that's okay. Parenting is not about being perfect all of the time because goodness knows that that would never, you know, that's not going to work out. it's it's doing It's doing good enough most of the time. um i always remember someone told me that and I thought, oh, it doesn't sound like a good bar to aim for. But the more I think about it, the more it really is.
00:44:22
Speaker
You are going to push your child too much. Sometimes you are going to not, ah not push them far enough to be able to achieve their potential sometimes. And it's a bit of a see-saw. How do we figure out how to do anything in our life? How do we figure out how to walk? Well, we just get up and and we give it a bit of a go and we start early and we make it motivating for children. We get in front of them. We wave the toys. We you know encourage them to come to us. We do all of those things. Now, with our PDA population, we might not be able to be as quite overt with our encouragement. As you said, getting the balance right is really important. But if we start early, start these conversations early, if we haven't started early, you know, you're listening to this and you have a six or seven, eight, nine year old, and we haven't really made progress, Think about how you would start with a much younger child. Think about how you'd drip that information in. Think about how we'd start to have those more positive conversations around poo. When we're eating at the dinner table, did you know that this food is eventually going to become poo that comes out of our butt? Can we make it fun? Can we make it funny? Can we make poo jokes? Can we make fart jokes? You know, what kid doesn't find a fart joke funny? Yeah.
00:45:33
Speaker
You know, the more that we make this activity a bit more intrinsically motivating as well. So rather than just thinking about, you know, I think rewards are probably something that comes up so much and and don't typically work great for this population, at least in my clinical experience. But having an activity to do whilst you're sitting on the toilet that is really motivating or making that toilet space so lovely that child is drawn in there.
00:45:59
Speaker
then these sort of things make make that activity so much more intrinsically motivating and then child's gonna want to do it. they' got ah They're gonna come to you they're gonna meet you and they're going to start to drive that process a little bit more.
00:46:12
Speaker
Avoiding constipation, number one is so, so important. um if anyone doesn't take anything else away, but just please check your child's poos. Definitely have a look on the ERIC website as to what is normal, what is healthy. If you have any suspicions that your child is constipated, please be really persistent with your medical professionals. A lot of medical professionals are fantastic and they have great knowledge and skills. Maybe they've been to some ERIC training.
00:46:38
Speaker
But a lot of health professionals have never worked in this area and they don't necessarily have the training to know what constipation is and what a huge burden it can place on a whole family. And it might not be treated correctly. So definitely avoid constipation or get it treated um and keep it. i Try and have as much fun with it as possible.
00:46:59
Speaker
yeah Oh, that's brilliant. That's fabulous.
Conclusion and Resources for PDA Support
00:47:02
Speaker
Tabby, you've given us so much to think about and so many brilliant ideas for people to try. I mean, I know with my PDA, ah who's in his, you know, in teenage years, but we still have some issues that are ongoing.
00:47:15
Speaker
I've picked up some tips that I'm going to put into practice, but I'm sure for many parents listening who have younger children or are just starting out with this process or thinking, how on earth am I going to manage this?
00:47:27
Speaker
You've given them loads, loads of ideas. So thank you so much. that That's brilliant. And I know we're going dig in um a little bit deeper in our Deeper Dive podcast, the second part of today's podcast. with Tabby m and that will be um on our training hub. and but if you wanted i We're going to put in the show notes and contact information for Tabby and for Eric. So if anybody does want to and And seek out more support with them that way, then please feel free to do so. And we'll also put a link to the Deeper Dive podcast, the second part of this podcast and in the show notes as well. um Our subscribers to our training hub. make it possible for us to create and put out this podcast for everybody for free and as a thank you they get all the recordings and the self-guided training that's on that hub so thank you subscribers for your generosity and and if you'd like to become a subscriber there's also a link in our show notes to that so all that's left for me to say is thank you once again tabby you've been brilliant really really richness of information has been wonderful. and So thank you for joining us today and thank you to our listeners for tuning in to the PDA Society's podcast. We hope you've enjoyed this episode and if you found it useful don't forget to subscribe and to share.
00:48:48
Speaker
For more support, resources and information around PDA please visit the PDA Society's website at www.pdasociety.org.uk And I look forward to seeing you next time. Thank you. Thanks.
00:49:04
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.
00:49:17
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.