Challenges of Potty/Toilet Training and Diapers for Young and Older Kids

By Isabelle Schnadig

Turning the challenges of potty/toilet training into a success story - sharing our experience.

Let’s start this section with the end of the story. Here’s the good news: your son or daughter will eventually become potty trained. Here’s the bad news: you will get discouraged along the way. It’s impossible not to feel discouraged. We felt that around potty training our typical children. That feeling was magnified tenfold with our DS + HD son, Adrien.

My best advice is to remember that your child will follow your lead in how they experience potty training. Can you turn this difficult and “dirty“ challenge into something to overcome together? The potty-training experience is one of the reasons why we adopted the motto “Shit Happens” at REACH. How else could we describe the situation we find ourselves in? So, we won’t lie or sugar coat it–this is a difficult part of the journey, but it is also an amazing milestone in your child’s life on the path towards self-confidence and independence.

Now, let me share with you some of the specifics of our experience achieving fully potty/toilet training. Keep in mind that our son has total colonic HD. You and your child’s experience will certainly differ, as each child is unique. So please read this as a recap of our journey, taking whatever tips you find helpful.

As Adrien became a “toddler” (ages 2 to 5), we gave him as many opportunities as possible to sit on his potty. His potty itself was a little portable. We combined “potty time” with music (which he loves) with much praise (which he also loves). Our goal was to make this a relaxing experience each time. We did not expect to achieve success each time (meaning doing #1 and #2 while seated on the potty) but it was to create a routine that was comfortable. At this age he was still in diapers/pull-ups. (He was in a special needs pre-school with most of the other children wearing a diaper/pull-ups).

During this time, it became clear to us that Adrien’s HD made it impossible for him to have predictable bowel and sphincter control. He simply didn’t know when he needed to go and as a result, he had countless unpredictable and very loose BMs a day. So, we didn’t really try to make full potty training a priority.

Another point worth mentioning is the cost of diapers/pull ups. These products are expensive. You will need to factor this into your budgeting, so buy these in bulk. Also, your family may qualify for local or federal government assistance for diapers (see paragraph below). We spent a small fortune on these products.

As Adrien grew and his bowel movements became more predictable, we decided we were ready and committed to making potty training a priority. We first created our own social story around potty training. It had a picture of the potty, the underwear, the bathroom, etc.... We talked and walked Adrien through each step of the “task”, with ample supply of positive reinforcement for each part of the story.

We then created a routine, taking him to the bathroom every 30-45 minutes and worked with his teachers/school to make this a key self-help skill for his Individualized Education Plan (IEP). We got fully involved and received strong support from his teachers. Because Adrien was in a classroom with other special needs students, it made things easier; most of his schoolmates were going through similar challenges with their potty training.

It was a messy experience with routine daily accidents. We provided countless pairs of underwear and changes of clothes for school and plastic bags for the soiled clothes to come home. This lasted a month or two (maybe a little longer). It was very hard work for everyone involved. As a bonus, my husband and I learned how to clean our own washing machine too!

Just as we were at our wits end, we started seeing fewer accidents. We then spaced the potty/toilet time to 45-60 minutes. Eventually, our son was able to indicate when he needed to go.

We tackled nighttime after he got fully toilet training during the day. We created another social story, which we used during the bedtime routine. This included taking him to the bathroom before turning off the light. Again, we spent weeks and months scrubbing and washing sheets while he learned the nighttime routine. We doubled down on mattress protection too.

Adrien still has occasional accidents, even today, when he is sick. But this is exceptional, although still frustrating. When it happens, we are not shy about using pull-ups.