Parents of children with special needs struggle with a lot of areas of development for their children. There is one area that can be difficult for us to discuss openly. We can quickly discuss milestones like crawling, walking, and talking with people in our life. However, incontinence and potty training can be a sensitive topic that many of us feel shame and judgment about by no fault of our own.
Children with special needs have a higher incidence of incontinence than their typically developing peers. Incontinence in children with physical disabilities, intellectual disabilities, children with autism spectrum disorder and medical disabilities can make potty training incredibly complicated for a child to master and for a parent to instruct. When you have a child that isn’t trained by a certain age, there can also be a lot of stress and questions to parents on why their child is still incontinent. Many parents end up feeling defeated, upset, and ashamed to share their journey.
We tried to start potty training my son around age 2. The practice was very casual and informal. I wanted my son to understand the need for a toilet and what he needed to do on the toilet. We did a lot of play around toilets, and we allowed him to follow us into and out of the bathroom. Initially, he showed interest in the bathroom, but over time the toilet became more a place for him to play than to use. I would go to events for ECFE, preschool, or classes for children, and parents always seemed to talk about their tips and strategies for toilet training. Everyone seemed to have the answer to WHAT WORKS to train their child. Mothers would brag that their 15 months old had mastered daytime training, and the next mother would talk about their 18-month-old being day and night training. Inside my head, I was just reminded how far behind my son was falling compared to his friends. Friends and teachers would provide me suggestions like:
-Taking your child to the toilet every hour on the hour
-Letting your child run around naked so they can feel the urine on them if they have an accident
-Making charts and incentive graphs for your child to earn a coveted toy
-Using a timer so your child could visually see how much time had gone by and using the alarm as an indication to take them to the toilet
In theory, all of these strategies sounded simple enough. We tried a few of them at our house. There was the day we let him run around the house unclothed, and unfortunately, he wouldn’t notice until he was wet that he had gone to the bathroom. I tried taking him to the toilet every hour. I would sit him on the toilet, and he would just sit there and cry. To keep him there, I would give him his Ipad to watch and distract him. The results were always the same; he would never void on the toilet.
Around the age of three, I brought it up to my son’s doctor about how I just didn’t think he understood and couldn’t feel what was going on in his body. I was feeling ashamed, and I honestly felt like a failure. Outward I would pretend like it didn’t bother me. On the inside, I felt like I was somehow failing him as a mother by not helping him potty train. My heart felt heavy and defeated with shame and guilt that I was doing something wrong as his mother. Everyone else seemed to be able to train their child, and nothing I tried could get him to understand, feel, or realize the importance of toilet training.
I remember his doctor very matter of factly looking at me and saying, “Katie, he has so much going on neurologically and medically, that potty training should be the very least of your priorities. If and when he is ready, he will demonstrate to you his willingness to learn.”
I could not believe my ears. For the first time, someone permitted me NOT to force my child to potty train. She explained to me that children with neurological disabilities like my son often suffer from incontinence well into their adolescence. When he was diagnosed with Autism at age 4, much of his inability to train became more crystal clear. I wasn’t a bad mom because he wasn’t mastering toilet training! His body was not ready to learn, his brain wasn’t sending the right signals, and no amount of willing him to learn would make him able to hold his bladder.
Around this time, we just stopped trying to train our son. I stopped even thinking about what we needed to do to make him ready, and we stocked up on diapers from our medical supply company. When people broached the subject with me, instead of feeling shame or guilt I would confidently tell them, “He’s just not ready.” It certainly didn’t stop the questions about potty training, but my knowledge changed my perception to their inquiries.
There is a lot of pressure put on us as parents to have children that develop on a typical trajectory. For parents of children with special needs, it can be hard to navigate the path of our own child’s development. Our kids are late to reach many of the essential milestones of childhood, and that is no different for potty training. Some of our kids will train, and others of ours won’t ever train. No matter where your child falls there is no shame in the fact that your child isn’t using the potty by a certain age.
The best thing you can do for yourself is STOP WORRYING about training your child. Stop doing the potty train boot camps, running around the house naked, or using the timers to get them to train. The more pressure you put on your child, the more resistance they will give you in training. We don’t want to make potty training stressful for them. Skills and development have a way of coming at their own time. All of our children are unique, and reminding yourself that childhood is a marathon and not a sprint will help you with the inner battle you face. What other people think about your 8 or 10-year-old still being in diapers shouldn’t make any difference in your life. They are not the one raising your child, and they certainly do not know the factors that are in play in your child’s life.
There is no shame in incontinence. In fact, as parents, we should be helping our children that deal with it to feel confident in who they are as a person. Who cares if they have to wear a diaper, a pull-up, or a liner to bed! As long as your child is happy, learning, and making progress in life that is all that matters. When and if they are ready, they will show you they are ready. If they never get there, you can always remind yourself that sometimes disabilities come in many forms. If you were raising a child that was blind, you would not force them to try to see. If you are raising a child that is incontinent, you cannot force them to feel the urge to go. Accepting where your child is at in their development will make the whole process easier for you and your child