Frustration and impatience are all too common when it comes to the dreaded process of toilet-training, especially when it takes a while (for what surely feels like, and sometimes is, years). While a typically developing child is usually toilet-trained by the age of three or four, an “average” age for kids with disabilities doesn’t really exist — which pretty much kills the punchline for you way up front here:
The only way to reach your toilet-training goals (not to mention get out of this alive) is to give yourself and your possibly struggling child all the grace you can muster.
And then when you think you’ve given all the grace you have to give, muster up some more.
To get some insight and direction, we reached out to a pediatric urologist, a pediatrician, and a behavior analyst. Here, they discuss common toilet-training difficulties, how to start, and what steps to take if we’re feeling stuck.
“When a parent tells me ‘I think I’m ready for toilet training,’ I work with the family to develop a plan that is doable,” says behavior analyst Danielle Zavagno (MA, BCBA, LBA), Kyo Autism Therapy’s Regional Director for the Dallas Fort-Worth area. “And make sure they do a well-visit check if there are any medical concerns.”
According to pediatric urologist Dr. Scott Sparks at CHLA, the causes or conditions that can be associated with toilet-training difficulties for children with disabilities fall all over the map. For example, almost all children with spinal cord abnormalities or irregularities (most commonly spina bifida) are going to have urinary issues. “When the spine is abnormal, the bladder is also abnormal, which makes it even tougher,” he explains.
“The one thing I try to stress to families is be patient, which is not an answer people want to hear,” he says. “Depending on the reason — whether it’s that kids don’t have typical sensations to tell when their bladder is full, or they don’t have typical neuromuscular function to be able to engage the process, or it’s a learning issue — it can be super frustrating.”
Pediatrician Dr. Angela Gunn of St. Joseph’s University Medical Center in Paterson, New Jersey, has seen the full gamut of disabilities and how each can affect a child’s toilet-training experience. Children with visual impairments can be at a disadvantage because they can’t as easily be shown and made to observe the process, so they have to rely heavily on their verbal skills, which may or may not also be affected. A child with cerebral palsy may require an adaptive seat, as balance and sitting in an appropriate position can be difficult.
“No matter the disability, for many of these children, part of the issue is chronic constipation. So, you need to make sure their stools are soft and they can have some control over them,” she says. “It can make it harder for them to urinate, too, because the hard stool can sit there on the bladder, making it more likely for a child to have an accident.”
Dr. Sparks recommends trying a stool softener as well. “Even if you don’t think your kid is constipated, getting on a stool softener can make a world of difference. A lot of times, kids who have a hard time feeling they’re full are able to feel their bladder once their colon is cleaned out; this also helps kids who have a hard time voiding on a schedule.”
Dr. Gunn says children should be assessed for frequency of urination and any pain or fever — that could point to an overactive bladder or urinary tract infection (UTI). But once any medical complications have been addressed and/or ruled out, it’s time to tackle the behavioral causes that can make toilet-training such a sly beast.
“‘Behavioral’ has such a negative connotation,” says Dr. Sparks. “A lot of people think ‘behavior’ means it’s a purposeful behavior, when in fact it means it’s a problem with performing a behavior, or the ability to understand a behavior.”
Dr. Sparks tells us that the first thing he does when assessing a kid with toilet-training issues or bedwetting is ask them two questions:
Can you feel when your bladder is full and you have to pee?
How often are you peeing right now?
“One of the biggest things is making sure they’re trying to pee on a regular basis,” he says. “This is important for kids whether they have disabilities or not. It’s all about setting a schedule and training the bladder to fill to a certain amount and then empty once it gets to that amount. It’s less about training the patient. Most people think we’re training the child, but I really think of it as training the kid’s bladder — with kids with disabilities, it often just takes a lot longer to change these bladder behaviors.”
It’s a good idea to put kids on a two-hour toilet schedule. (You can involve your child in the process by getting them a so-called “potty watch,” which provides a discrete signal to remind them when it’s time to go.) Dr. Sparks also stresses the importance of making sure kids understand that they need to give themselves ample time while there, and that they understand it’s about relaxing and not squeezing those muscles.
Communication skills are also key to success here – for caregivers! Zavagno encourages the adults in the equation to think literally.
Does your child know the difference between a wet or soiled diaper or underwear versus a dry one? Have they ever felt a wet pair of shorts and compared it to a dry pair? If the answer is no, start showing them what “wet” feels like on their skin. “It doesn’t matter the age or developmental level, as long as you can take the time to teach that, then they can typically develop that awareness,” she says.
That mentality can also apply to some of the most challenging behaviors, such as smearing of feces or even a curiosity for some children to taste it. “Many parents might feel so alone and isolated and wonder why their child is doing this because it can be so appalling to an adult. But the problem can be as simple as asking, ‘Have they ever been taught or told that it’s something they don’t play with?’ To them, it’s something fun and squishy like playdough or slime. It doesn’t matter that it came out of their body.”
Another key prerequisite skill Zavagno applies across ages, which is often overlooked, she says, is the child’s ability to pull down their own diaper/underwear/pants. “They may know they need to go, but have an accident because of something as simple as that they can’t get their pants off.”
Dr. Sparks reminds us that it’s important to set appropriate expectations. One of the first things he asks families is, “Do we think that full continence is something we can achieve? Would we be happy with something less than complete continence? If so, what is that, and where do we see things?”
If your child is able to successfully schedule-train to use the toilet, keep a close eye on what is an appropriate expectation for them based on their developmental stage. As frustrating as it can be for some parents, still having a couple accidents a day might be more “normal” than you think. “Oftentimes we are too focused on what we can do to make it easier, versus what the child is telling us is going to be easier,” Zavagno says. “If they are happy going on a schedule and earning the Baby Shark song every time they go, then why are we going to change that?”
If and when you’re ready to break away from a more timed approach, still keep a watch close at hand, especially when out in the community. Zavagno reminds parents, “You can’t all of a sudden have unrealistic expectations” upon leaving the home. If you know your child typically has accidents every hour, be sure to allow enough time to get to a public restroom that often, no matter where you are. “We also often assume children will generalize across bathrooms but that’s not always the case. It may seem like they are having more accidents when out, but have we ever shown them that it’s okay to follow the same schedule while out in the community?”
Parents of older children might also ask themselves: Is it the worst thing in the world if, for now, my child wears a diaper when we’re in public?
“It’s still a teaching moment and they’ll still feel the wetness and know it’s something that shouldn’t have happened, but it removes the embarrassment from the equation and they can walk around the grocery store or Target without wet pants on,” Zavagno explains, allowing them to slowly but surely gain the confidence to keep trying.
The same common-sense approach needs to spill into the overnight hours. If a child is still struggling with accidents during the day, there is no reason to put added pressure on them by introducing night training. Dr. Gunn explains that nocturnal enuresis is only a true physical problem for a very small percentage of children who may take DDAVP for it, but medication should not be high on your priority list. “It (DDAVP) is not used in even typically developing children until around age 7, because nighttime control is a different beast and can just take longer,” she says.
Dr. Sparks agrees. “If your kid is not dry in the daytime, nighttime shouldn’t even be on your radar yet. Even if your kid is dry during the day and wetting at night, oftentimes the best thing to do is go back to daytime behaviors and try to figure out the problem.”
While having the right expectations (and maintaining them throughout the process) is critical, so is some level of enthusiasm on the child’s part. “For some kids, [lack of continence] just doesn’t bother them at all,” Dr. Sparks says. “And then there are other kids who it really bothers – I see them in clinic and they cry because they’re having accidents or wearing diapers and they’re worried other kids will find out about it.”
If your child has the drive to overcome it, then you also need to make sure that EVERYONE in their life is ready to do the same.
All caregivers need to be on board, from therapists to extended family to teachers, so that whatever protocol is being followed at home is carried through in all aspects of the child’s life.
“It’s very important to get school involved,” says Dr. Gunn. “The structure and routine of school lends itself very well to the whole (toilet-training) process.” And use all resources available to you — from the teacher to the school psychologist to occupational therapists, who can be very knowledgeable about daily living skills.
“Some families have great support through their kid’s IEP,” says Dr. Sparks. “I write letters all the time for families to make sure that at least at school, the kid is getting all the help they can. That might mean making sure they have someone to help catheterize or someone that can take them to the bathroom and help them understand what needs to happen in there.”
Don’t be afraid to be clear and honest about what your child needs to be successful at toilet-training, and involve the IEP team in formulating appropriate goals.
As you might have guessed by this step, there are no quick fixes or uncovered tips and tricks when it comes to ANY child’s toilet-training journey. The only tried-and-true methods that will never fail you are, in no particular order:
What are some strategies that have worked for you and your child? We’d love to know!
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