Toilet Training Children and Adolescents with Down Syndrome
Published on in Trisomy 21 Update
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Published on in Trisomy 21 Update
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.
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.
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.
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.
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.
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:
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.
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.