02/26/2026
Most kids born with BE will not be able to stay dry for awhile. Some stay in a pull-up style undie up into middle or highschool or until specific surgeries can be performed. Every BE kid is different, even with potty training, but the timeline is about the same for most. So, knowing that Benjamin would most likely have a difficult time with this and need to be in special underwear possibly into the teenage years, why bother with potty training now?
✨because I’m a mom that at least wants to TRY✨
✨because I’m a mom that encourages my kids to TRY✨ with almost anything. Sports, music, art, academics, etc… if my son tells me he’s interested in something and is serious about trying, giving it their all, taking responsibility and pushing through even when it’s hard… I will be right there with them. I like to say I’m raising sons with no limits.
Now of course, don’t be silly, I’m not allowing my elementary sons to jump off the roof, onto the trampoline, and into the pool BUT as long as they aren’t a danger to themselves or others and there won’t be a loss of life, limb, or eyesight… I’m pretty much like, “whatever, go for it bro!”
This mindset as a mom for my sons has allowed them to gain so much confidence and independence as well as body awareness.
So with Benjamin and his potty training, I had the same attitude. If he’s showing interest, let’s do this! 💪🏻 ✨
When my eldest son was born I tried to do everything by the book; calendars, potty watches, a reward system, even letting him run around naked. I put so much pressure on him and myself and caused so much unnecessary frustration. With my second son, it was about the same until my husband, their step dad, came into the picture and helped me out. “Why not let them just p*e outside?” For some reason I may never understand, that got them going. This new, exciting way of going potty in a bush in the backyard somehow made it click in their brain of when to go and why it was important to go in a potty. Thank goodness!
But then Benji was growing in my tummy and we all know the story with that. Things were obviously gonna be different. I knew I wouldn’t be able to follow the same techniques.
Why? Um yeah his bladder had been inside out and exposed! Meaning he would have to have a closure surgery and pelvic osteotomy. To put it plainly, his pelvic floor would also be extremely weak. And let’s not forget the scar tissue involved. The UTIs certainly don’t help; I can imagine if it’s painful to urinate you’re not gonna wanna try.
But Benjamin is extremely smart and loves to be involved in just about anything his family is doing. And he loves to TRY anything. Using the potty was no different.
When he started to show interest in the potty we immediately got him a little plastic one from the store as well as changed out our seat in the master bedroom. And here’s what happened:
👉🏻he would follow and watch. he’d sit on the potty even though nothing really happened. we would have him go through the motions. pull down the diaper, sit, wait, wipe, pull up the diaper, flush, wash hands.
👉🏻we learned ASL for the words “p*e, p**p, p***s, potty, hurt”
Every time he’d go or when we’d change his diaper we would use the appropriate words so he could see and recognize the feeling of going. The word he used the most was “hurt” and this helped a ton as he learned other body part words. He would sign to me, “hurt p*e” or “hurt p***s” or “hurt p**p” before ever being able to speak those words. He eventually would start to say “hurt back” and I could then identify constipation or UTIs before other symptoms started to present themselves.
👉🏻yes, we let Benji p*e outside. For a boy I guess it’s just super fun. Again, something about being able to p*e in a bush or on the side of the house is super exciting.
👉🏻 we let Benjamin feel his p*e come out of him. This one might be slightly controversial but I always bring up how Helen Keller learned to speak. Sign language, feeling, repetition. Note I did NOT do this with p**p. As Benji sat on the potty I would sign “p*e” and have him touch as he went. I would say very clearly “wet.” And when he’d wash his hands I would repeat that the water is wet. Again, when he’d urinate he could feel while sitting on the potty that this wet feeling was coming out of a specific body part. As he sat more often, I would then demonstrate engaging his abdominal muscles. I would gently push on him to show him that he would have to use those to go p*e. Now, when he goes, you can tell that he’s making an effort to “push” and instead of leaking he has a small stream.
👉🏻 we left this all to Benjamin’s own timing. Some days he’s super stoked about going potty on the toilet every single time. Other days he doesn’t care or it hurts so it seems to be more comfortable to go in the diaper. We don’t push or force Benji to go.
✨overall it’s tons of encouragement, communication, and patience.✨
I’m super proud of my boy. I know it must be difficult and it hurts to go at times. But he’s a trooper and I’m glad that despite the surgeries and set backs, the painful UTIs, despite the looking and feeling different down there, he still tries. He may not understand the purpose behind it all now but as he gets older I hope all this work makes a basic human function easier on him.
