Toilet Training Children and Adolescents with Down Syndrome

Toileting is an activity of daily living. It is important to increase independence in toileting because it increases a child’s opportunities for community and school participation, as well as social engagement (Vermandel et al., 2008). Increased independence in toileting also decreases a child’s exposure to vulnerable situations, decreasing the risk of abuse (Martinello, 2014).

Toilet training takes time and patience, as does learning any new skill. Toileting consists of a variety of components, including recognizing the feeling of needing to void, walking to the restroom, maintaining an upright posture while sitting on the toilet, wiping thoroughly, managing clothing, and washing hands.  

Children and adolescents with Down syndrome (also known as trisomy 21) may need increased time to develop and learn the skills associated with each of the components of toileting. In a research study surveying the parents of 137 children with Down syndrome, researchers found that, on average, parents initiate toilet training around 3.4 years of age and completed training around 6.6 years of age (Dreher et al., 2022). Furthermore, boys with Down syndrome may take longer to toilet train than girls with Down syndrome (Dolva et al., 2007). Children and adolescents with Down syndrome may face challenges when toilet training due to their fine motor skills, gross motor skills and cognitive development, as well as their ability to identify and communicate their need to void.

In the previously mentioned research study, researchers surveyed parents to identify strategies that parents have used when toilet training their child or adolescent with Down syndrome (Dreher et al., 2022). The strategies parents found to be most successful were using a consistent sitting schedule, using reinforcement and prompting their child to use the restroom (Dreher et al., 2022). Recommendations for trying these strategies with your child are included below.  

Sitting schedule

Having your child sit on the toilet at consistent times throughout the day, even if your child does not always void, will help their body learn the skill of toileting. Below are recommendations for developing and implementing a sitting schedule.

• To develop a sitting schedule that works best for your child, consider keeping a voiding diary for about two weeks. Make note of the times they urinate or has a bowel movement throughout the day. When planning your child’s sitting times, ensure they are sitting around the times they typically void, such as after waking up, after meals, and before going to sleep.
• Consider having your child sit on the toilet every 20-30 minutes. Even if your child does not void, encourage them to sit for at least 2-3 minutes. If necessary, distract your child while they are sitting by watching a video or singing a song. A visual timer, such as an hourglass timer or a bubble timer may help your child to sit for a longer amount of time. Bubble timers can be purchased online.   
• Drinking more fluids leading up to sitting times may help your child void successfully in the toilet. Water, fruit juices, decaffeinated teas, and warm beverages help to reduce constipation and increase your child’s success on the toilet (Constipation, 2021).
• Provide praise when your child successfully voids in the toilet to help them learn that this is the goal. See reinforcement section below for further encouragement ideas.
• When toilet training with a busy schedule, it is often helpful to focus the toilet training on the weekends, when more time is available. However, consistency is key. The more repetitive the toileting routine is, the easier it will be to learn. If possible, talk with your child’s school to have them continue the same toilet sitting schedule at school.  

Reinforcement

Some children may lack motivation to toilet train because it is much more interesting to continue playing than to stop what they are doing to go to the restroom. Making toileting fun will help increase your child’s interest in toileting. Below are some recommendations to offer reinforcement when toilet training.

Keep a sticker chart in the restroom. Each time your child sits on the toilet, they can add a sticker to the chart. If more motivation is needed, you can offer a larger prize after so many stickers, such as a preferred snack, video or toy.

Consider having a special toy that your child only associates with toileting. Allow your child to play with the toy for a few minutes after each time they sit on the toilet.  

Prompting

Your child is learning to recognize the feeling of needing to void. Providing prompts for them to go to the restroom will help your child think about and remember to act on this feeling. Below are some recommendations to prompt your child to use the restroom.  

Consider changing the way you talk to your child about going to the restroom. For example, rather than asking questions, such as, “Do you want to go potty?” or “Do you need to go potty?” you could try stating “Let’s go potty.” Your child may not think they need to void or may not be motivated to go to the restroom; therefore, making a statement, rather than asking a question, will decrease the opportunity for behavioral challenges. If your child still resists going to the restroom, consider saying “let’s try” or “let’s try so we can do ___.”  

Consider setting an alarm and helping your child learn to go to the restroom each time they hear the alarm.   

Additional tips

• Consider your child’s clothing when toilet training. Many children and adolescents with Down syndrome experience delays in skills associated with dressing, undressing and managing fasteners. Children may have a hard time holding a dress or a ribbon out of the way when sitting on the toilet. Simple, two-piece outfits with elastic waistbands will likely be the easiest clothing to manage when beginning toileting. When at home, consider allowing your child to just wear underwear to omit one step of undressing. Remember, dressing and toileting both require many skills. Decreasing as many demands of the task as possible, while learning a new skill, will help your child be successful.  
• Teach your child to pull their pants down past the knees to help your child keep the clothing out of the way and wipe more easily. Being consistent with this cue will help your child perform this skill more automatically.  
• Place a small stool at your child’s feet when sitting on the toilet. Low muscle tone is a common characteristic of children and adolescents with Down syndrome. Providing foot support will help your child maintain postural control while sitting.  
• Consider a toilet seat reducer. Decreasing the size of the seat may help your child feel more secure on the toilet, motivating them to sit for longer periods of time.  
• Consider having your child blow bubbles or a pinwheel while sitting on the toilet to facilitate relaxation of the pelvic floor muscles.
• When teaching your child to wipe, consider beginning by using wet wipes for more thorough and easier cleaning. If possible, place a mirror in front of your child to see where they are reaching. Additionally, a handle or stable surface that your child can grab may help them feel more secure when reaching to wipe.  

Remember, toilet training takes time, patience, and consistency. Even after your child learns the skill of toileting, they may continue to require support with parts of the toileting routine, such as prompting, wiping after bowel movements, flushing or washing their hands (Dreher et al., 2020). Additionally, you may notice that your child’s skills change at times. Hospitalizations, surgeries, attention to other medical needs, inconsistency across settings, or life transitions, such as changing schools or moving to a new home, may result in a regression of toileting skills (Dreher et al., 2020). Continue to work with your child through these challenges and keep toilet training as consistent as possible.  

Who should I consult about toilet training?

Talk with your child’s pediatrician about your child’s potty-training readiness. You can also talk to your child’s occupational therapist (OT), as OTs can evaluate and provide intervention to improve your child’s postural control, fine motor skills, dressing skills, sensory integration skills, and participation in daily routines, to support your child in increasing participation in toileting. Additionally, occupational therapists can evaluate a skill called interoception, which refers to one’s ability to interpret what the body is feeling. Interoception is what helps us know we are hungry or full or that we need to void. Deficits in interoception make toilet training difficult because a child may not feel like they need to void.  

Another source of intervention that may benefit your child is pelvic health physical therapy. A pelvic health physical therapist can identify and treat any of the following:  

• Dysfunctional breathing
• Scar immobility/pain
• Poor strength and coordination of the pelvic floor
• Constipation and encopresis  
• Core/hip and pelvic floor muscle strength and coordination  

Pelvic health therapy also addresses impairments of range of motion, impaired toileting posture, limited sensation/awareness of the urge to void and defecate, and impaired developmental and gross motor skills.  

Be sure to look for a future Trisomy 21 newsletter where the pediatric pelvic health program developed specifically for children with Trisomy 21 at CHOP will be further explained.  

References

1. Constipation. Penn State College of Medicine Research. (2021, August 11). Retrieved Dec. 21, 2022, from https://research.med.psu.edu/oncology-nutrition-exercise/patient-guides/constipation/
2. Dolva, AS, Lilja, M, & Hemmingsson, H. (2007). Functional performance characteristics associated with postponing elementary school entry among children with Down syndrome. The American Journal of Occupational Therapy, 61(4), 414-420.
3. Dreher, T, Wolter-Warmerdam, K, Holland, S, Katz, T, & Patel, L. (2022). Toilet training in children and adolescents with down syndrome. Journal of developmental and behavioral pediatrics: JDBP, 43(6), e381-e389.
4. Martinello, E. (2014). Reviewing strategies for risk reduction of sexual abuse of children and adolescents with intellectual disabilities: A focus on early intervention. Sexuality and Disability, 32(2), 167-174.
5. Vermandel, A, Van Kampen, M, Van Gorp, C, & Wyndaele, JJ. (2008). How to toilet train healthy children? A review of the literature. Neurourology and urodynamics, 27(3), 162-166. https://doi.org/10.1002/nau.20490

Tricia Kinslow, MS, OTR/L, is an occupational therapist with the Trisomy 21 Program and the Feeding and Swallowing Outpatient Clinic at Children's Hospital of Philadelphia.