Special Needs Potty Training Tips With Pediatric OT Kristin Smith

Navigating potty training can be a very difficult milestone for many parents. Having a child with special needs can make the task feel all the more daunting, maybe even impossible. Rest assured, there are tried and true methods and strategies that work well. And to understand more about those, I spoke with Pediatric Occupational Therapist and mom, Kristin Smith. 

Kristin has been a Pediatric Occupational Therapist for over 25 years.  Her background with medically fragile children and trauma has given her a deeper understanding of families who care for a child with disabilities.  

She has worked with children in a variety of settings including early intervention, clinics, hospitals and schools. Kristin specializes in working with children on the Autism spectrum who are non-verbal and have significant sensory dysfunction. She is a strong advocate for functional independence and the importance it has on young adulthood. 

This belief has sparked her passion for potty training! (easypeasytherapy.com)

I do want to note that this interview was done via video call, and has been transcribed from that audio, so some parts may not be grammatically correct. They will read as the words were spoken in an open, back and forth question and answer conversation.

Let’s dive in…

Me: share with us more of your expertise on this matter – how to potty train a special needs child, and dealing with the common challenges that come along with that.

Kristin: Sure. So the first thing, as a new mom with a child with special needs, just hearing that your child has a disability is overwhelming, and people are going to be giving you so much advice. And that’s going to be hard to discern which advice to take and what advice to push away and what to start first.

And with potty training, that’s one of those things that parents are told by their therapist or their mother in law or whoever it might be. And they’re going to get so much information. And they’re ultimately, you have to make the right decision for your family and for your child.

That being said, I think there are some tips that I typically give, regardless of your child, what disability that they have. So some disabilities are more severe, profoundly impacting, and some are less. I always have a conversation with my families, as far as what do you consider being potty trained, some of my kids that I work with are maybe very metabolically involved in in a wheelchair. 

And so their idea of what might be potty trained looks a lot different than maybe my physically able child that may be on the autism spectrum might see a difference in what potty training is.

So first of all, we come to background of what that might look like. But for the most part, whether your child has severe needs or more mild needs, these are typically my my tips that I would get perfect because it really doesn’t matter, ultimately.

“Don’t wait for mainstream readiness signs”

So the first one is don’t wait, don’t wait for those readiness signs that everybody tells you to wait for. Some of those would be wait till they wake up dry. Wait till they announced that they’re wet…

And they can tell you that a lot of the kids that I work with don’t have those communication skills at all. Sometimes people will say wait till they can tell you that they’re messy or they’re uncomfortable being messy. A lot of my children that I work with sensory wise, they’re okay with being messy, and they’re kind of used to it. So they’re not going to fuss about that.

Hiding is another one where people will be told once your child is hiding, you know, you’re kind of past the point.

For me, ultimately, I’ll say if your child is already three years old and isn’t potty trained, yet it’s time to get some professional help with that. I’m okay with children with disabilities because what happens is that the parents will wait and wait and wait for those readiness signs to come. 

And before you know it, they’re school age or they’re already in school and they’re in a special education classroom. And then sometimes the school will say that it’s not their responsibility to to do that and I’ll talk a little bit more about that later.

So what happens is it just keeps getting pushed to the wayside because then academics become the forefront. So I really feel strongly as an occupational therapist that indigenous living skills as an adult starts early. And that’s the most important thing you can do for your child.

Me: So if you’re telling me, hey, don’t wait for the readiness, and then I’m thinking, okay, but then what is the sign? What would be something, somewhere for me to be like, okay, now’s the time.

Kristin: Well, as long as they’re not having a bowel movement in their sleep, like an infant would, I would say they’re ready for toileting. And toileting is a skill that needs to be taught. And taught early.

And so that might just start with exposure, you know, exposing your kid as early as you can to the bathroom, sitting on the toilet, familiarity with the bathroom, because anxiety goes hand in hand with kids with special needs. Especially those that have sensory difficulties.

So, usually, it’s when you as the parent are ready to dedicate the time and commitment to it. And also knowing again, like I said, what is your idea of potty training? Is it complete independence? Or is it time training? Or those kinds of things? That depends on what disability your child has.

“So I tell all my families that I work with, that this is a marathon, not a sprint.”

And I have to remind them that if you’re promised bells and whistles that your child is going to be trained in three days, or even a week, you know, like, that’s just not how it will happen. And you have to know that the time commitment, is it really just as much like I don’t expect you to stay in the house and never leave and those kinds of things. 

But what I do expect is the commitment part to go the long distance, because we are in for the long haul.

And when you make the decision to get rid of pull ups. That is it. We can’t go backwards. You know, you have to keep moving forward and assume competence. And I think that’s the hardest part for parents with disabilities is that they don’t give their child enough credit about what they can learn. 

“presuming competence is the key.”

Me: Oh, I like that. That’s such a great way to put it. You know, that’s reassuring for parents. Okay, so please go ahead with your second tip.

Kristin: So another piece of advice that I give my families is that bathroom behaviors happen in the bathroom.

So as moms as busy moms, I get it I have three grown sons, but we typically will just do a diaper change wherever we can or wherever we are. So if that’s the family room or a bedroom. But the best way you can start familiarizing a child with disabilities is that bathroom behaviors don’t happen in the family room. They don’t happen in front of other people. 

It’s a private moment that we go into the bathroom for so set yourself up for success. Put all those things inside under the sink. So that when you are changing, it kind of forces you to go in there and and make sure diaper changes.

“And I kind of have that same mentality with eating and snacking.”

Because timing is everything and after we eat we usually have a bowel movement or have accidents. So the more you can kind of control eating, as far as timing, the better you will be able to time (peeing/pooping). So it’s just that input output is my hospital days coming in. 

So snacks and foods happen at the kitchen table or a designated place that we eat snacks and drink, I usually will say limit the grazing don’t just have a sippy cup walking all around, because you’re not going to do well with timing. And you’re not setting your child up for success, because that’s our goal.

We want them to be successful, and which means we might need to change some of our habits as parents on them. And that part’s a little rough. But those are that’s usually what I’ll say, you know, stop, stop the grazing, watch your timing of food and bathroom behaviors in the bathroom. 

Me: Okay, so a couple questions breaking off of that. This might be more specific, you might talk about it later, but constipation –  would you want that cup around with them or
accessible throughout the day?

Because you want to help them continue to take in liquids? Or would you say no, that still stands where you want to keep the or that like special situation? So maybe it’s different?

Kristin: So actually, that’s my third tip, what a great segue. My third is – conquer constipation. And children with disabilities struggle with constipation for many reasons. Those with muscular impairments don’t move and run and play and walk and crawl like we do. So they their ball movements and tend to be
affected by that.

On the other hand, kids that are more sensory based, they have very picky diets. And I talk to my families about whether your child’s a picky eater, or, or truly a problem feeder. And there’s a difference between that a lot of people will say my child’s a picky eater, and, and a lot of toddlers are, it’s why we call it the toddler diet. 

But I’m concerned about my kids who are problem feeders. And those are the kids that I work with that have less than 10 foods in their diet that become very rigid with their foods will only grow goldfish crackers, and cheese cubes, or it has to be french fries, only from the McDonald’s drive thru on, you know, on 72nd Street.

So to answer your question about liquids, I still say they can drink as much as they want. You just have to have designated spaces to do that so that you can better time how much they’re getting in there liquid wise, because you know, if they’re just walking around the house with a sippy cup, you don’t really know how much they had unless you’re really following them around.

“Don’t be afraid to use the products that are on the market (to battle constipation).”

The other thing is, don’t be afraid to use the products that are on the market. And I think a lot of parents, especially those with special needs, feel shame in having to use miralax or an Xlax or a stimulant laxative, and we can get into all the different kinds of laxatives. But I’m not usually one for a stimulant laxative, but sometimes that’s what you have to do, because some of the kids I work with are holding their bowel movements for five days, eight days.

So, you know, I really want to tackle constipation. Get your child having a bowel movement every day. And you’re talking about having a bowel movement every day. But if it’s pebbles and they’re small, that’s still constipation. So really, we need to work on that before we really work on potty training.

Because again, you’re not setting your child up for success if they if things aren’t soft and smooth and soft, soft serve is is the way you want to be. And so if you need to use miralax, which is an osmotic-type laxative, and it’s non addicting, and you can really kind of play with that dosing and it’s easy to wean off of. But some some kids do have to resort to either medications such as Xlax or other kinds of medicines that help the propulsion of the intestines.

Me: How do you transition for special needs to more of an 
independent ability, like urge awareness and getting them to kind of initiate (going to the potty) on their
own? You mentioned competency earlier…

Kristin: Well, that’s a loaded question first of all. You’re commenting about routines – I’m all for routines, routines, and consistency, are your child’s saving grace, because they predictability and routine is what they need, especially when they’re learning something new. 

It causes much less stress on everyone. And I’m not saying you need to stay holed up in your house. But routines help, and so does continuity and predictability. And I’ll talk a little bit about that. 

A lot of times parents want to assume that independence is when a child’s going to tell you that they have to go to the bathroom. It’s one of the last things to come. One of the last things and when you think about it, your child who’s independent, rarely do they say, “I’m going to the bathroom!” They just go and do it.

And so sometimes I’ll say you know what, that may not ever happen with your child. Especially when they really want privacy and alone time, they’re probably going to go in there on their own and do what they have to do. And then and then go, but there are different ways that we work on communication, especially when the children that I work with that are non verbal.

“I don’t use very much language with the kids that I work with, and children with disabilities because they cannot process all of the language that’s coming at them.”

I really work on finding a communication partner, because just screaming out to the world I have to go to the bathroom isn’t always helpful. And most of the kids can’t, I’ll use a lot of visuals where parents will wear like a badge, so that when the parent prompts them and says, “I can see that you’re dancing on your toes, your body looks like it has to go to the bathroom time for bathroom”… 

I really don’t use any, and this kind of segues into my next tip – I don’t use very much language with the kids that I work with, and children with disabilities because they cannot process all of the language that’s coming at them.

Questions, especially, we tend to ask so many questions to our children. Do you have to go? Do you feel like you have to go right? Are you wet? And most of the times either a kiddo doesn’t have the language to even express yes or no. 

But also, if you ask a question, you’re giving a choice. So do you have to go to the bathroom? Do I want everybody to ask me? Do I want to stop playing with my tree? I want to go do something not as fun? Yeah. Yeah. No, not so much. So, stop questioning stuff and bombarding with questions, just offer statements of what you observe.

What are you noticing? What is your child doing physically, that you can tell that they have to go to the bathroom? You’re hiding in the corner, you’re hiding in your poop spot. “We poop in the toilet, walk with me. Let’s go to the bathroom.”

Stop over talking. Especially when you’re in the bathroom. Like I say, once you step foot into that bathroom – try to only use gestures and smiles and thumbs up. Those things can go such a long way. You don’t need to bombard them with language.

“Kids who have a hard time processing language don’t do well with potty books.”

And stop over explaining toilet training. As much as I love, there’s so many amazing books that are out there, and I love them and they’re adorable. But, kids that have a hard time processing language, don’t do well with them. And kids that have high anxiety. There’s no need to explain where the poop goes, what happens to it in their stomach and what’s happening in their intestines and that it’s ready to come out. 

Kids that have high stress, high anxiety, yes, its probably hurtful to over explain it because they just perpetuate the thoughts in their head.

And I’m always ‘less is more’ if you’re in doubt. I tell a parent less is more. I do use lots of visuals of what I want them to do in the bathroom through a social story or something like that. And I have the steps laid out, you know, go in the bathroom, turn on the light, wash your hand, you know, all those steps that happen. 

But we don’t talk about really, I mean, the body will naturally do what it needs to do. And they know, you don’t need to over talk it.

And I will definitely say that that’s  definitely not a popular opinion (not using potty books for special needs children). These books are adorable, and they’re wonderful. And for a typically developing child, they work very well.

I will say too, I usually don’t do any anything on the toilet. Bathroom behaviors happen in the bathroom. It’s not a place to watch an iPad, it’s not a place to read a book, it’s not a place to play a toy. Sometimes I will do some, some oral toys in the bathroom for pelvic floor kinds of stuff. Very rarely.

“Enlist and lean on those who help and support you, during this process.”

Lastly, I will say, my biggest piece of advice is to use your tribe, use your village, because you will need them. Use your therapist your teachers, there are a lot of the kids that I work with have a one on one assistant at school. Use them. I’ve trained teams,. Not only will I train the family, but depending on how much support they need, I will train their their school team, I will support the IEP at school. And that’s an individual education plan for kids with disabilities in school systems.

“It is educationally relevant, it ultimately determines where they will go.”

I’m a strong advocate as an OT, I’ve worked in a hospital setting, I’ve worked in the schools. And I’m a strong advocate that if your child is in the school, and they’re over three, and they’re not toilet trained, it’s time it make that a goal in their IEP, it is educationally relevant, it ultimately determines where they will go and how they will be, how employable they will be, and what kind of independent living facility they could live in. Depending if they’re 12 being independent or not. Wow. It’s a hard reality. And it’s a hard thing to tell parents. But that’s why I say it doesn’t matter if your kids have a significant disability or a little one. Start early. Start early, you’ll never regret it.

Me: Say I don’t have a lot of family around or I don’t know, I am unsure about how to approach the school or maybe my child isn’t in school yet. Where could I look for added support to to get me on track for training?

Kristin: Well, if your child on their IEP team has therapists available to them, they can also reach out to their therapist. As an OT, I have a specialty in potty training, as well as pelvic floor disabilities and sensory impairment. You know, OTS kind of physical therapists have more of those specialties.

As far as like needing support for an IEP team, I live in the state of Illinois, every state’s different we have every county in our state has an options and advocacy facility is free of charge that you can reach out to if you feel like you need an advocate to help you at your IEP meeting with those kinds of things.

But I’m available. So I offer a 15 minute complimentary consultation about your child. And usually that’s where we just exchanged a lot of information and you tell me what your goals are and what their impairments are. And then we talk about all the different ways I can support the child and the family.

To contact Kristin and learn more about her supportive services – easypeasytherapy.com is where you can find her, and sign up for a consultation. 

on Instagram, you can connect with her @easypeasytherapy and you can message here with any specific questions about your toddler’s potty training needs.