We waited a long time for this… over 12 years to be exact! It started when Brian was about 2.5 years old and has gone on ever since: timed toilet training. Brian wasn’t even walking at the time! Jim or I would initially seat him on the “poddy chair”, (then eventually the toilet seat when he got bigger) after each snack and meal, with the hopes that he would go. Occasionally there was a success, and when there was, we made a huge deal of it. There was lots of positive reinforcement given , as well as bits of a favorite food that was reserved only for successful voiding or pooping. While we realized that toilet training would naturally take longer in a child with disabilities, we figured that Brian would just need extra time and repetition of this skill, just like all of the other life skills. I had guessed that Brian would master toileting on his own by age 6- for some reason, I just doubled the time that it would take an average typical child. I couldn’t have been more wrong.

We learned over time that going to the bathroom is actually a complex motor planning process that is comprised of several steps. One also has to make sure that there are no medical issues going on with their child, that they actually have the ability to control their bladder and bowel, while being able to go when appropriate. Medications or medical conditions can clearly effect these things. Kids have to be physically ready too. We realize in retrospect that Brian was not ready at all in the beginning, though I still think it was good to have him go through the motions of toileting at that time.

Children with Down syndrome and autism generally require tons of repetition with most skills before it becomes imprinted on the brain. I just didn’t think it would take almost 13 years in this instance! Behaviors, especially self-control (or not) is a also a huge piece of this puzzle, especially once our kids understand the purpose of toileting, as long as medical issues are ruled out first. For non-verbal children especially, using the bathroom or not is a means of control for them, in a world where so much is out of their control…

Brian’s initial journey was one of many accidents when he was little, then this gradually changed to the other extreme, “holding at all costs”, especially during school hours. He would still have accidents, but they were less frequent over time and NOT going, became more the norm. We were always so worried that he would damage his kidneys somehow and he was already more prone towards being constipated ( not being a big beverage guy didn’t help either), but we were reassured by physicians that nothing would be medically effected: keep offering juice and water, more fiber, more practice, more time….boy, this whole experience was like watching the grass grow!

I did have angst and struggle with Brian’s toileting for a long time, especially after I had to bring him to the ER twice because he held his urine for over 15 hours. Bloodwork, kidney ultrasound and exams were unremarkable, then Brian would FINALLY go!! Perhaps Brian understood when the attending physician mentioned something about the insertion of a catheter- he went almost immediately after that. 😳 It was the pediatric nephrologist in the end who assured me ( and reminded me) that Brian continues to be medically fine, she has seen these shenanigans many times over with other patients , keep plugging away, and, when Brian decides he is ready to use the bathroom independently, he will let us know. Of course we still didn’t know exactly when this would be, and after a long while, we were getting worn down by the suspense and stress of it all. I had to always build in Extra Bathroom Time (EBT), to make sure any opportunities weren’t missed. Add EBT to ETT (Extra Transition Time), for all daily activities, and time moves very slowly…sigh 😩

Brian decided just a few months ago that he was finally ready to start using the bathroom at school on a more regular basis. It started with once a week, to twice a week, and now he goes almost daily. He is also requesting to use the bathroom via the speech app on his iPad independently and is heading towards the bathroom on his own without a verbal reminder or a physical prompt. Why Brian decided that he is ready now, I have no idea, but I’m sure grateful he has reached this milestone! Brian still has a ways to go- he doesn’t know how to wipe himself. He still wears overnight diapers and still has accidents occasionally. Sometimes he will forget to wash his hands. Or pull up his pants. Home and school will continue to work on these things too, but it is definite progress… I am determined before I leave this earth that Brian will have the whole bathroom business mastered, because it is that important of a life skill. Brian is almost 15 years old, and while I had hoped that bathroom skills would have been achieved much sooner, I know he WILL get there, in his own time, as he has proven over and over again. Brian communicates clearly now that he is “The Bathroom Boss”, capable, and with a proven track record in this domain, with more skills to come..perhaps not on my schedule, but this is not about me anyway. 😊

Until we meet again, thanks for reading! 😊❤️