A Developmental Approach to Toileting: Part 1

What parent doesn’t ask about toileting issues when their child is on the spectrum? I don’t think I’ve met a parent of an autistic child who hasn’t struggled with toileting. But is it the child’s issue or is it the parent’s issue? Developmental, Individual differences, Relationship-based (DIR) Occupational Therapist, Alysha Paiaro, is the Assistant Director of Little Buddies Pediatric Therapy, Inc. which is a DIR Occupational Therapy practice just outside Vancouver, British Columbia where she is lovingly known as the Queen of Poop.

Alysha has her DIR Proficient Certificate from the Interdisciplinary Council on Development and Learning (ICDL), is a PLAY Project consultant, has training in sensory integration, and in the relationship between trauma and sensory regulation. Her boss is Keith Landherr whom we podcasted with a few weeks ago, and today we are talking about toileting and interoception which is an area she has quite a bit of experience with.

Gauging the Family’s ‘Normal’

Everybody poops and every parent has had some kind of parenting journey, yet we don’t talk about it that much. It’s the kind of thing that happens behind closed doors, or something we talk about tongue-in-cheek, if we do, Alysha starts. Even if it’s a huge part of the day for the parent and child and is very stressful, parents are hesitant to talk about it and are hesitant where to go for support. Just like with many approaches, we want to follow the child’s lead. They’re going to let us know when they’re ready and are paying attention to that, but it might not be on our schedule, Alysha suggests.

Doing this work, it’s really challenged Alysha to confront her own shame about it. There’s so much for us to do as parents and caregivers in terms of modelling, supporting and co-regulating the children as they’re going through this process. Most of us have a complex relationship with going to the bathroom, depending on our own personal histories that relates to our own individual differences, Alysha says. Is it something we’re uncomfortable with and don’t talk about, or did we grow up in a house where it was just another event? It’s a great starting spot to check in with families, Alysha shares, where she can give them that safe spot to talk about this.

It takes some parents some getting used to talking about poop with Alysha. They wonder if she isn’t grossed out. She is not. Of course it smells, and it’s nothing she wants to play with, but it is part of everyday life and we need to think about it in that way. Practicing as a DIR-informed O.T., Alysha says it’s important to know our own personal histories and our relationship with our bodies, making as much sense of what’s happening inside of us as we do for what’s coming at us from the outside. I added that there must be such a variation in cultural differences too, where in some homes, people keep the bathroom door open, and others lock the door. Some joke about smelling up the ‘john’, while others keep it private.

Parents come in with their background and then they have their expectations and reactions to what their children do that instills reactions in their children. Alysha says it’s about meaning making. When she thinks about toileting with the ultimate goal to support children to have a comfortable, safe relationship with their body so the sensations that tell them they have ‘to go’ isn’t scary nor stressful nor provoke feelings of shame. It’s about going to the toilet and it’s meaningful for them to go to the toilet. This is what’s missing in the behavioural approaches that tend to be the current ‘gold standard’ in toilet training: that meaning making. Why do we want to go to the bathroom in the toilet? It’s because of hygiene and other learned practices like being in a private space. This includes a lot of higher level social thinking to wonder why we toilet the way we do.

Is it about Awareness?

A common profile that Alysha sees is the child who is comfortable going to the bathroom anywhere. They will go in their diaper while they’re in the car, on a swing, or in front of strangers and seem to be comfortable with it. They are seemingly unaware they they’ve gone. Alysha hears the phrase that they lack awareness of what’s going on in their body. They’re getting older and it’s getting messier and the parents are ready for the child to begin using the toilet. Alysha doesn’t agree that they are unaware. Instead, it’s an intrinsically motivated act for them. It just makes sense to just go for them. It also makes sense to them to not let us know about it. They may or may not register that it’s wet.

Supporting the Child’s Learning

A lot of our job, Alysha offers, is around going back to those basics and building that awareness and understanding in a way that’s meaningful for that child. But how do we do that? Like for many, many things, she says, play is the way. We want to bring play to the forefront to amplify awareness, she continues, just like we would with other sensory experiences. For the child who runs and bumps into things, we might bring awareness by saying things like, “Oh, lots of kids bump into things at your age. I know that you’re just so excited to get to the other side of the room.”

And if there’s something you don’t want the child to run into by accident you might playfully jump in front and say, with affect, “Whoa! Careful! This is my most favourite vase in the world!” where we amplify that awareness to give them the information that they need to change their course. But how do we do that with poop? We want to get rid of it as soon as we possibly can, Alysha exclaims! That speed that we go in with as adults send the message that this is not something we should pay much attention to. We should just get rid of it as quickly as we can. We don’t want to look at it or get it on our hands. We tend to want to get in and get out, Alysha explains, but that may not be supporting the child’s learning in all the ways that we could be.

We can support our child’s learning by amplifying the experience which might be as simple as lifting up the dirty diaper so your child can see and smell what’s in there, Alysha says. I cautioned that I’d be worried my child would stick his hand in it. Alysha reassures that it’s not to encourage playing with poop, but if a child is reaching out to touch the poop, that is a gesture of curiosity. And if they do get it on their hand and realize it’s gross and motion to you to clean it off, then that’s a learning experience that builds meaning around having this stuff that came out of me, and it’s kind of gross. It might take seeing or touching it to get that sense, she explains. 

What if our child doesn’t find it noxious, I ask Alysha? She ponders what can be our reaction and our guide in that moment. Our children are looking to us to make sense of that moment, which is that social reciprocity piece. She suggests checking in with ourselves before we enter that bathroom. Are we, ourselves, regulated and ready to handle the inevitable gross mess without getting too anxious or frustrated? If so, great. It allows us to set up to co-regulate in that moment. She wants to focus on getting circles of communication happening with the child before the diaper comes off to build the connection and the child’s awareness and problem-solving and awareness around, “Where did that come from?“

By making meaning of where that came from by wondering together, looking behind you, or in the mirror you can communicate about it coming from our body. And that may be all that you do for now. It might be that your child can only tolerate being in the bathroom for a short amount of time, so you clean up and move on. But each time you can build on that slowly and model being calm. If the child does touch their poop, our response is really important. Doing the exaggerated affect of, “Yuck!” will need to be honest and not humorous. When we see poop, we aren’t excited and making jokes. That’s not the right message.   

We want to amplify, “Gross” which isn’t going higher in our voice that indicates playfulness. We might drop our tone of voice and cover it up quickly and put it in the garbage. We want to clarify what our affective message is in that moment. We want to tap into a communication style that the child can resonate with and convey the message we want to. 

What about Rewards?

Many tactics to toilet train are based on scripts and rewards or social stories, and maybe parents tend to get angry and impatient around messes by startling the child with exaggerated responses. Alysha says not to be afraid to ask for support. It’s tough having to deal with bathroom messes multiple times a day, day after day. Alysha is not opposed to having a meaningful, positive response to pooping in the toilet, but what’s really important is that it’s different from the externally motivated tangible rewards such as, “If you poop in the toilet you’ll get your tablet” or a preferred toy or treat. Does that really celebrate and acknowledge for the child what they just accomplished in the moment?

What is meaningful for the child that provides a natural moment of celebration? It’s different for every child. When we’re building these relationships with our children, Alysha says, we all build our own language of celebration that feels good for us. It should look different from anyone else’s. At their clinic, Alysha has a dance party when a child comes out of the bathroom. It might be different for Grandma at the restaurant where it might be a warm, hug, which is just meaningful to that child as the dance party. For me, I do recall talking to my son in a soothing manner afterwards saying, “Oh, that must feel so good to get your poopies out. Your tummy must feel so much better. Now we can finally go to sleep.“

We want our children to be intrinsically motivated and tuned in to what’s happening in their own bodies, not performing something out of their control for somebody else, which is what token rewards can do. When I used the high affect with my son, saying how good it felt to get that out, it built our connection and drew the connection of his poop to his internal body sensation which really is building awareness of regulation and how that feels. It’s a different way of thinking about a natural reward for the body.

Toileting is Developmental

Everyone goes through toileting processes, and something like smearing poop is not unique to children with disabilities. Many neurotypical babies explore their own poop as well. Some autistic kids do when they’re much older. My autistic son never really did, but his toileting experience was quite delayed. He was in way-too-small XL sized diapers at age 7, or XL pull-ups that were, by that point, almost cutting off his circulation they were so tight. It’s a developmental process. First they pee in the toilet, then we tackle poop. And then there’s bedwetting, which can persist long after our children have been toilet trained.  

Interoception and Environmental Experiences

When our body gets full and we have to pee or poop, it’s a notice that our body’s homeostasis is off. It’s the same when we get hungry or tired. It’s an incredibly powerful communicator of our body to send us these signals that we need to go to the bathroom. But they can be confusing because the sensations might be the same as the feeling when our tummy drops when we go quickly down a slide. Sometimes there’s pain involved if gas is building up in our intestines. Suddenly your body is suddenly hurting, but we aren’t seeing anything dangerous. Many kids on the spectrum have gastrointestinal issues that give them challenging sensory experiences.

I’ll get reports from school sometime that my son was a bit aggressive but within half an hour, he has a bowel movement, but he wasn’t aware that that’s what was happening inside making him be aggressive. It’s the same for us if we eat something bad and feel awful. It can make us aggressive and impatient as well. We can make the most meaning of these experiences when we are calm and regulated, though, Alysha shares. Regulation is a key component for toilet training.

Also, as the body becomes more dysregulated, the more muddled the body message becomes. We might just know that something is not ok and need our personal space. If everything is the same and our child is suddenly dysregulated, it might be a cue for us to wonder how long it’s been since our child has eaten or slept. And it might also be that there is a bowel movement brewing inside. Some children have an incredible capacity to hold their bowels and some only will use the bathroom at home and never go at school. Alysha says that our bodies run on a schedule and even many adults don’t like the use the bathroom at work.

It might not necessarily mean there’s a problem. The child might just be letting us know that there’s something about the school bathroom that just doesn’t feel right. If that child is consistently going only at home and it’s a routine with no pain from the build up during the day at school. But if the child can never go anywhere except in the house, it can be quite challenging because we aren’t always at home. So we need to figure out what is so comfortable about the bathroom at home that isn’t present in public washrooms. There’s a lot of sensory issues when public bathrooms have loud flushing and hand dryers, and where sounds of others talking echoes against the walls.

At home you can be in a quiet room and you don’t even have to be anywhere near the toilet when it flushes. You can wash your hand with a washcloth. Whatever it is, figure out what your child finds comforting about being able to go at home, but not elsewhere. How can we get those feelings of safety and regulation in the other bathrooms? And usually that work needs to start when we don’t have to go to the bathroom, Alysha says. 

‘The Work’

I asked Alysha about bringing the child to the toilet on a schedule to see if they have to go, before they are toilet trained, as a way of getting them to go in the toilet. I also asked about making that bathroom a safe place by playing in it when nobody has to go to the bathroom. Maybe you play with toys near the bathtub, for instance. Sometimes we need to find that moment of success to start the process, Alysha responds, so we have a better chance of getting that moment the more time we spend on the toilet. But first, get to know your child’s rhythms and patterns. Plan those trips to the bathroom during the times where it’s most likely that your child will need to go to the washroom.

Alysha also suggests watching for cues. Sometimes your child will strike a little pose, lean on something, or go into their little spot in the corner, then it makes more sense to be playing near the washroom because they’ll need to use it. Alysha hears parents say that there’s no consistency at all at times. But be playful and curious in your detective work. Cues can be very subtle like a very subtle pause, or shifting their legs apart. If you haven’t changed the diaper in awhile, that might be your moment of curiosity, Alysha says, when you can say, “It looks like you might have to pee. Can I check?” Then you can see if you were correct or it’s, “Oh, no. That was my mistake. You must have been looking at something across the room.“

If the child is wet, that’s great! You can say, “Oh! It’s time to get changed. Let’s go!” That gives your child that link of when they pee, Mom wants to take them to the bathroom, which is a great way to begin to build that body connection, Alysha offers. When I feel this, this is what happens next. Then Mom cleans you up and says, “Oh doesn’t that feel better?” or you do the silly dance, or whatever your celebration is. It becomes this sequence of events. She encourages parents to make sense of this and if you are wrong about them being wet, that you capitalize on making that a new learning opportunity by asking, “Hmm, I wonder why you stopped, then?“

Ruling Out Other Concerns 

Some children have a very strong aversion to going anywhere near the washroom and just scream. Before we begin doing ‘the work’, we want to rule out that they are experiencing trauma from a behavioural intervention that worked on training them to toilet when they weren’t ready or able to. If that experience was traumatizing for them, they may completely reject any further attempts to continue. This will set us back and we’ll have to work on being near the bathroom when the child is in a good mood and slowly building that tolerance for being near the bathroom.

If there’s a history of constipation, it likely means diminished sensory awareness, so we can’t link a body sensation to their awareness of having to go. Then, Alysha continues, the sensations that they do have can be extremely uncomfortable and passing a bowel movement can be quite painful. If they are prescribed a laxative by their physician, it can be very distressing to then have diarrhea that’s unpredictable and that they haven’t experienced that much before. On top of that, parents often react more strongly to diarrhea. The relationship between constipation and regulation is huge, Alysha states. So we want to focus on if our child can regularly pass their stool before starting to work on going to the toilet.

Going Slow to Move Faster

Alysha says that if you have ruled out medical and trauma factors and the child is still distressed we have to continue to wonder and it might be a sensory aversion. Start slowly and really empathize that this is something that is very challenging for your child. It might be too much to just plop them in the bathroom and just force them to be in there. We might start just hanging out closer to the bathroom or saying that we don’t need to be in the bathroom for very long. It might be that as a family, you start using the washroom with the door open so it’s normalized for the child. Maybe you don’t flush the toilet with the child right there, in case that is alarming the child. 

You might be purposeful about it by saying to the sibling, “You take your brother to the other room now and cover your ears because I’m going to flush now!” It is about us initiating for that child that sense of, “We see you and see that this is really hard.” We don’t want to do it all at once, making them also have to flush. One step at a time. If we start with regulation, empathy and emotional respect, that will open the door for some problem-solving, Alysha suggests. It might be starting with turning the light off because when the light is on the loud fan is on. It might be walking by the bathroom and turning the light off saying, “Oh, that doesn’t need to be on!” so you can weave it in to other parts of the day, nonchalantly.

Stay tuned for Part 2 next week with Alysha where we cover more aspects of this vast topic of toileting. If you found this podcast and blog helpful or informative, please share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. 

Until next week, here’s to choosing play and experiencing joy everyday!