Let’s Talk : Toilet Training in the Down syndrome community
Potty training. It's a topic that has filled my DMs multiple times and has brought you (and me) to tears more than once. It's one of those milestones that can feel wrapped up in excitement, frustration, uncertainty, pride, and pure exhaustion.
So this month, as part of our new "Let's Talk" series, we asked our Rising Kites community to share their real experiences with toilet training. What worked. What didn't. What surprised them. What they wish someone had told them sooner. And you showed up — in the comments, in our stories, in our DMs — with honesty and hard-earned wisdom.
Here's what our community taught us.
Before You Begin
A recurring theme in what families shared: success often started with making sure a child was physically ready, not just developmentally ready. Before diving in, it's worth thinking through:
Constipation or diarrhea
Other gastrointestinal (GI) concerns
Low muscle tone
How your child communicates their needs (verbally, through signs, gestures, AAC, or other cues)
Sensory differences
If your child is dealing with ongoing constipation, diarrhea, or other GI concerns, it's worth talking with your pediatrician or a pediatric GI specialist before you start. Addressing what's happening physically first can make the whole process go more smoothly.
And one reassurance worth saying out loud: a child does not have to communicate verbally to be successful with toilet training.
There's No One Timeline, and No One "Right" Way
If there's a single thread running through every response we received, it's this: every child's journey looks different, and that's okay.
Some families started at two and a half. Others didn't begin until their child was five, six, or seven. Some kids clicked with a method in a week; others are still working on it years later. As one mom put it simply:
"It's not linear."
And another reminded us it's not a race at all:
"The less stress we put on it, the more receptive he's been... kids potty train when THEY are ready, not when PARENTS are ready."
Progress for a child with Down syndrome can take months, sometimes years — not days — and that doesn't mean it isn't working. And if it's becoming frustrating for everyone involved, it's genuinely okay to pause and try again later. Several families told us that stepping back for a few weeks or months led to more success than pushing through.
The Honest Struggles
We asked what's been hard, and you didn't hold back:
Communication. Several families shared that their child gives little to no cue that they need to go, which makes it hard to know when to act. As one mom wrote, "He gives zero cues. None."
Consistency on the go. Busy households with multiple kids, packed schedules, and life happening made it tough to stay consistent. "Our family is always on the go so it's hard to stay home and be consistent."
The laundry. More than one parent brought up the never-ending laundry cycle — and never having a spare outfit exactly when you need one.
Resistance."He fights us to go on the toilet, but once he's there he does great!" — a feeling many of you could relate to.
If any of this sounds familiar, you are in very good company.
What's Helped: Real Tips from Real Families
Scheduled, Timed Toileting
By far, the most repeated advice in our community was this: don't wait for your child to tell you they have to go — build bathroom visits into the rhythm of the day instead.
"Schedule trained is potty trained in Down syndrome... our kids don't self-initiate until MUCH later, and even when they do, their decreased sensory perception means they do not go frequently enough. We should still prompt them to go on a schedule."
Families described tying bathroom trips to daily transitions — waking up, meals, snacks, before leaving the house, before bed — rather than waiting for a signal that might not come. One mom shared a gradual approach: start every 15 minutes, then 30, then 45, slowly building up to a two-hour rhythm.
Visual and Communication Supports
Visual schedules used consistently at home and school
Signing "potty" for kids who aren't yet verbal
Simple, repeated language like "it's time to go pee" or "it's time to go poop" instead of asking
Removing distractions like books, tablets, or toys during bathroom time so your child can focus
Comfort and Sensory Tips
Try a smaller, child-sized potty instead of the "big" toilet, which can feel intimidating
Blowing bubbles or blowing through a straw while sitting can help relax the pelvic floor and engage the core to help urination
Going without underwear or diapers for a day or two so your child can feel and see when they're going
Building Independence
Letting the potty stay visible in a common living space at first, then gradually moving it to the bathroom
Pairing bathroom time with a preferred activity, like reading, to build positive association
Coordinating with school or an IEP team so home and classroom routines match — several families said this was a turning point. Download our FREE toileting plan here.
On Incentives and Motivation
Families were split, and both approaches worked for different kids. Some used candy, stickers, or a bell to celebrate a successful trip, phasing out the reward over time. Others intentionally avoided incentives so the bathroom itself became the routine, not the reward. There's no wrong answer here — the right motivation, whether that's praise, a favorite activity, a treat, or something else, looks different for every child. Watching for what actually motivates your child, and following their lead on readiness, matters more than matching anyone else's approach.
Night Training
Several parents shared that they tackled night and nap training around the same time to avoid a second round later. Tips included cutting liquids about 90 minutes before bed and waking your child once during the night to try, rather than letting them go all night in a pull-up.
After Training: The Journey Continues
Several families told us that reaching "potty trained" wasn't the finish line they expected. Many continued navigating constipation, nighttime accidents, accidents during illness, or regressions during transitions and big life changes well after daytime training clicked. That's normal, too.
If there's one thing we hope you take from all of this, it's that every child learns differently, every timeline looks different, and progress is still progress. You and your child are not behind.
Understanding the Medical Side
A few families in our community pointed us toward important medical context from the Adult Down Syndrome Center, and it reframed how many of us think about this process.
Low muscle tone (hypotonia) can affect the bladder the same way it affects other muscles — meaning some kids need extra time and repetition to build the strength and coordination to fully empty their bladder. Decreased sensory perception can also mean a child genuinely doesn't feel the urge the way we'd expect, which is part of why a schedule matters so much, not just for training but for long-term bladder health. Regularly emptying the bladder — generally every two to three hours — helps prevent urinary retention and UTIs, and this is something that stays important well into adulthood, not just during the toddler years.
If your child seems to be doing "everything right" and still struggles, it may not be about readiness or effort at all — it may be physical. That's worth bringing up with your child's doctor.
Bringing School and Home Together
One of the turning points families mentioned again and again was getting school and home on the same page — using the same words, the same schedule, the same cues, so a child isn't relearning the routine twice.
To make that easier, we created a free Toileting Plan — a simple, fillable handout you can give to your child's teacher, aide, or daycare provider. It covers the details that actually matter for consistency: your child's typical routine and timing, what they wear and use at home, how they let you know they need to go, preferred prompting and words, sensory sensitivities to watch for, and what's helpful (and not helpful) if an accident happens.
It's a small thing, but it turns "please help my child with toileting" into a clear, shared plan — and takes some of the guesswork off of teachers who want to help but don't know your child's routine yet.
(Download the Toileting Plan here.)
Resources Our Community Recommends
Thanks to this wonderful community, we've also been able to compile a list of tools, information, and experts that can help as you navigate toilet training for your child with Down syndrome:
Adult Down Syndrome Center — Advocate Medical Group's Instagram is full of clear, medically grounded posts on bladder health, urinary retention, and UTI prevention specific to Down syndrome, at every age.
Down Syndrome UK's Pants 4 School Program — A step-by-step toilet training program built specifically for kids with Down syndrome, including guidance on timed toileting.
Toilet Training For Everyone — Revised and Expanded — A video training resource by Pat Mirenda, PhD, BCBA-D (University of British Columbia) and Katie Rinald, PhD, BCBA (Blackbird Toileting Services). Originally developed for kids with autism, several of our families found it just as useful for their toilet training journey.
The M.O.P. Book, by Steve Hodges, M.D. with Suzanne Schlosberg — available on Amazon. Addresses bedwetting, daytime accidents, and chronic constipation, and several parents in our community said it helped them understand what was going on physically, not just behaviorally.
Dr. Hannah Kloosterman — a pediatric physical therapist and pediatric pelvic health expert whose page covers constipation, poop withholding, and pelvic health basics that tie directly into toileting struggles.
You Are Not Alone
Maybe the most common thing shared with us wasn't a tip at all — it was relief. Relief in finding out that zero cues, constant accidents, years-long timelines, and daily laundry piles are all part of a completely normal range of experience in our community.
"Feeling discouraged because I don't want to do this, but SO encouraging that this is so normal and we are in good company."
So if you're in the thick of it right now — sitting on a bathroom floor, googling "potty training regression," or just staring down a pile of wet laundry — we see you. This is hard. And you are doing better than you think.
Disclaimer: The information shared in this post comes from the experiences of families in our Down syndrome community and is intended for informational purposes only. It is not medical advice and should not replace guidance from your child's healthcare team. If you have questions about your child's readiness for toilet training, or concerns such as constipation, diarrhea, or other medical issues, talk with your pediatrician or an appropriate specialist.
This is part of our new monthly "Let's Talk" series, where we compile real experiences and resources from the Rising Kites community. Have a toilet training tip, question, or story of your own? We'd love to hear it — come discuss at www.instagram.com/rising.kites. We'll keep this conversation going, because sometimes the thing another parent needs most is just knowing they aren't alone.