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Incontinence Community

Incontinence in Children with Special Needs

Aimee Sharp
Author | Shield HealthCare
06/21/18  9:15 AM PST
Incontinence

For many families, the day that a toddler uses the potty for the first time is a cause for celebration. But for some families with children with special needs, that day may come much later, or not at all.

And that’s okay! Everyone develops differently, and parents of children with special needs will be happy to celebrate those milestones and inchstones wherever they may come. And if that day never comes, then we can celebrate the child (and later, adult) for who they are.

For children with special needs, there’s often a reason behind why they are not-yet potty-trained. For children with cerebral palsy, the issue may be physical (they aren’t able to use the muscles that are needed to be continent) or developmental (the concept may be beyond them, at present). For children with Down syndrome, developmental disabilities may play a part, but in addition, “Renal anomalies have been found in up to 21% of children with Down’s syndrome” (source) – renal anomalies mean that some part of the child’s anatomy that is related to their bladder and bowel function may not be operating typically. Children with autism may either experience incontinence due to a developmental disability and/or psychological symptoms. You can find additional common conditions of people who may experience incontinence issues in this PDF created by the National Association for Continence (NAFC).

No matter the child’s disability, when daytime incontinence (diurnal enuresis) continues past the age of five or nighttime incontinence, AKA bed wetting (nocturnal enuresis) continues past the age of seven, a doctor should be seen to rule out other issues.

“There is a frequent misconception that, if children with learning disabilities present
with wetting and soiling problems, the cause is related to some sort of developmental delay rather than an underlying bladder or bowel problem. As a result, many of these children do not undergo a comprehensive bladder and bowel assessment. Instead, they have a simple ‘pad assessment’ and are issued with nappies in the mistaken belief that they are not ready to be toilet trained. This is a potentially dangerous situation, particularly as untreated problems can lead to long-term bladder or intestinal damage.” Source.

For some parents of children with special needs, there may be a long time of living in a “no-man’s land” between diapers and being potty-trained. The parents or caregivers may be able to help the child get on a type of schedule of when to sit on the toilet. In this case, the caregiver may find an elimination chart helpful.

For other parents and caregivers, they may choose to get medical procedures done to help with “toilet habits.” This may be necessary for a variety of reasons. For instance, one of our authors Alethea Mshar explains in this video that because of her son’s Hirschsprung’s disease, and the subsequent surgery, her family decided that Malone (MACE) and Mitrofanoff procedures would be best for her son Ben.

It’s also important to discuss all aspects of why and how the human body needs to eliminate waste with all children, in a way commensurate with their level of development. Parents and caregivers looking for help to discuss these topics may find social stories or videos helpful. This page on oneplaceforspecialneeds.com is a “Complete Guide to Special Needs Toilet Training” and contains links to not only how to speak to a child about toilet habits, but also resources for helping with toilet training for all types of disabilities. That page also links to resources discussing the need to wash hands after every visit to the bathroom.

The NAFC has a shorthand for potty-training: the 5P’s: patience, persistence, planning, practice and progress is possible. Remember that there may be setbacks: any change to your child’s routine might make them regress when it comes to something as potentially stressful and complicated as potty-training. But even if it seems like you’re back to square one, don’t forget that the the progress you made before might be squirreled away somewhere in their brain or in their muscle-memory, and it may just be there when you need it.

Best of luck!

Helpful links:

Toilet Training Children with Special Needs from HealthyChildren.org
Potty-training Kids with Special Needs: Weekend Boot Camp from LoveThatMax.com
Complete Guide to Special Needs Toilet Training from oneplaceforspecialneeds.com

Sources:

Nursing Times

BMJ Journals

National Association for Continence