This is not a fun topic for me to discuss, but I’m hoping that together we can help each other. If you are experiencing anything like this at home, regardless of your child’s age, you have my utmost empathy and understanding.
My son had delays in potty training, which is certainly not uncommon for a child with Autism and Sensory Processing Disorder. Truth be told, I have less detailed memories of those days as a single parent with chronic sleep deprivation, but we got through it. Not that my situation has changed, but things seem a bit more manageable with older children! Or maybe I’ve just matured 
He’s never been able to “take care of the paperwork” on his own, and that is challenging enough because I’m not here 24/7 to tend to his bottom. He has been known to hold it until I’m home from work, which creates some issues with the routine ebb and flow of daily potty experiences. Additionally, his diet is not 100% gluten free and he has never had a pleasant bathroom experience. The other part of the equation is due to his sensory processing disorder: he is unable to feel the sensation of having to go until it is absolutely the last second before an emergency. We have been working on this diligently for years with exceptional progress.
Until recently.
Justin will be 11 this month. About three months ago I noticed that he stopped going. Every few days I would find soiled boxer briefs in his closet or under his bed. Ruh-roh.
I immediately bought hygiene social stories, made it ABSOLUTELY clear that I was not mad at him and he would not be in trouble, and encouraged him to try using the bathroom on a regular schedule with visual supports.
It worked for a little while, and then things took a turn for the worse. He hadn’t gone for about a week and I made him sit down and try before I went to work one morning. When he was done I saw blood. A frightening amount of it.
Luckily, we ruled out the really scary stuff at the hospital and discovered it was due to impacting. More talks, more social stories, more diet adjustments… I thought it scared him into being more diligent with his potty experience. He has made it clear that not being able to clean himself embarrasses him, so I believed he had the capability and awareness to make certain choices regarding the bathroom.
Still he is regressing. Now he goes in his boxers and cleaning him up has become a physical issue. He is bigger than me. I am very careful to avoid attaching negative emotions to this experience and always try to be 150% supportive, but it is harrowing.
Why he is afraid to go
I believe that sensory issues are still playing a role, but there has to be other stuff going on to foster this behavior. His diet can always be improved. I’ve read that fear could stem from leaving a part of himself behind. And of course, overall it’s a long and painful experience for him.
For a child that can’t stand a speck of dirt on his hands, it bewilders me that he can sit in soiled and pungent undies with no issues. I won’t even tell you the details on how I had to sanitize his room. ACK.
Solutions
You know me, I always have to have a plan of action when faced with a challenge! We’ve luckily ruled out medical concerns and reasons. I thought about buying adult diapers, but I feel like that would make it okay for him to keep doing this. So here is what we plan to try:
- More social stories
- Positive reinforcement
- An interval timer where he will try at set times to get him used to the routine again
- Continued tweaks to his diet
- More movement, including yoga
- Natural stool softener, such as flaxseed oil
I will keep you posted! What about you? Have you experienced this at home with your child (no matter what age)? What worked for you? Did anything make it worse? Share your stories by commenting below!
I have this problem with both my kids and it is precisely for those issues you mentioned. I am keen to avoid making them feel bad about it but I have days when all I do is change clothes, undies, take them to the toilet or manage the fallout when they don’t get there in time.
I’ve been dealing with it in much the same way you have. It’s an ongoing challenge.
My two are much younger than your son but they love the “Bear in the Big Blue House” DVD on toileting. I’ve noticed after they watch that one, they seem to get better at managing things for a while. Then if they experience difficulty again with diet or some other issue that might start off the constipation train, we go back to square one.
Management, management … =) Thanks for posting this. It’s a difficult topic to discuss, I know.
Thanks so much for your comment, Mel! Your mention of that DVD brought back so many memories of when my teen daughter was potty training! (Pohhh-ttay, hey hey hey, pohhh-ttay…) <- the disco song : ) I’m sure I’ve given that away but it is worth looking for on Amazon or eBay. Thanks for the suggestion!
Cold Pressed Aloe Vera Juice or Gel Pulp~ Works like a MIRACLE to stop the with-holding .. we call it “tummy juice”
Thanks for the great suggestion, Elizabeth! I actually healed my bleeding ulcer when I was a teen with Aloe Vera Juice… it’s good stuff! When you first started using it did you have any… “fallout”? Like an explosive mess until a rhythm or routine was found?
Thank you for sharing your story. My son is 9 1/2 yrs old and we are having the same challenges. Your journey mirrors mine except I realize that I need to be more understanding that it is indeed not a factor that he will “age” out of it but still needs lots of encouragement each day. We have been using a probiotic from Klair Labs, the Infant Formula and it is gentle enough (just 1/4 tsp) to keep him regular, now I just need to help him with the “paper” issues and hygiene. Hang in there and thanks for reminding me to see his perspective.
Thank you for sharing your situation, Trish! The probiotic is a great idea! I used to have him on a probiotic and digestive enzymes and we sort of just fell out of the habit of taking them. Sounds like I should try again! Regarding the “paperwork” we still used toddler flushable wipes. A ton of them!
Great solutions Debi! Keeping your child’s bowels moving can be a challenge yet important. The “Why he is afraid to go” could be the anxiety about the pain so continuing to teak his diet is a good goal. Having a few BM’s without pain will help bring him back. A consistent schedule often has a positive impact, as well as distraction and making the bathroom experience relaxing. You mention sensory issues – has an OT ever determined an under-active interoceptive sense? Does he have the internal body awareness to sense when he has to go?
Hi, Connie! I knew you’d have great input
Regarding the sensory issues – he does not have the internal body awareness until the very last minute, if at all. We are not enrolled in any formal therapy, so that’s one for which I’m challenged about finding a home solution.