Sammy’s incontinence isn’t a problem just because of the hassle; it is also about his dignity.

Toilet training is something my brother will never overcome. Yes, I said it. Negative I know, but it’s true. I would love more than anything to be proven wrong.

For 18 years, my brother has worn a diaper. For 18 years, he has peed and pooped his pants. My theory for why he isn’t toilet trained? He doesn’t care. The normal discomfort we all feel if we are incontinent doesn’t exist to him.

If you’re used to something, why work to change it if it doesn’t bother you? It takes way more work for my brother to request the bathroom, pull down his pants, try to use the toilet, wipe, and pull up his pants. Did you ever think of how many steps there are to using the bathroom? Instead of all that, he could keep doing what he’s in the middle of doing and have someone else change him and do all work. No effort. No interruption to his music or chill time.

Even if you could teach all of those steps – or try and reinforce them – how do you teach what to do when you feel the sensation to use the bathroom? We have no idea when someone has to go, there’s no way to. There is no universal sign that signals a person has to go to the bathroom. Even if you think dancing around or fidgeting in a seat signals needing to use the bathroom – not everyone does it, and sometimes that may be too late if you are trying to teach the skill of using the bathroom. You can’t create a learning opportunity with a feeling. You can’t make someone feel like they have to go to the bathroom whenever you want. And you can’t teach someone that the feeling to go pee or poop means you should “ask for the bathroom” when you have no idea when they are feeling like that.

With my brother, they’ve tried everything. Going to the bathroom every 15 minutes, changing his diaper and clothes in the bathroom; cutting him off from chips so that he only gets them if he appropriately uses the toilet; “potty parties”; placing a sensor in his diaper so we know when he’s urinating; spending his entire school day on the toilet. All of this just to find a baseline of how much and when he pees. Just to try and teach what the toilet is used for. Just to try and make the bathroom the best thing in the world…

Have any of these worked? No.

He holds it for hours and hours (regardless of the amount of liquids we give him). And even though chips are his most favorite thing in the world, it wasn’t enough reinforcement for him to want to use the toilet. And as soon as he isn’t in the bathroom – BOOM – he pees everywhere. There’s no telling when it is going to happen. And because he holds it for hours, it goes through his diaper and soaks his clothes. It doesn’t stop there. If he is on his bed or a couch, those get soaked too – or he ends up standing in a pool of urine. This creates a cleanup that takes many hours.

Not only must Sammy be changed and sometimes bathed depending on how much and the kind of an accident he has – the couch or bed must be stripped. Sheets, mattress covers, pillows, couch covers, couch cushions must be washed, changed, and dried. It isn’t surprising anymore if I walk into my house and there isn’t a single cushion on the couch. There are often times when we have no clean
sheets because Sammy pees and soaks them faster than they can be cleaned.

I don’t think any of us resent Sammy for his incontinence. We absolutely don’t. We resent the fact of how much of a pain it is. And it is definitely something that drives us all crazy. Like his having autism isn’t enough? Now we have to deal with cleaning up pee 13 times a day? Not to mention, it can be sort of controlled in the household. But what if we go to the grocery store? A friend’s house? A restaurant? A long car ride?

If he pees in the middle of the cereal aisle, regardless of how much is in our cart – we stop and have to go home. And then there are the stares that come from all of the other customers around us. We rarely go to other people’s houses with Sammy. Not because we don’t want to bring him along – but because we don’t want him to have an accident on our friend’s furniture and risk ruining their stuff. Yes, we should be friends with people who understand, but you’re supposed to go to a friend’s and have fun. Instead, we are on edge the entire time and checking his diaper to make sure he isn’t the slightest bit wet. If he pees in a restaurant, we can scramble and clean as much as we want with the tiny napkins but no matter what, we’re going to have to have that embarrassing and uncomfortable conversation with the waiter to tell them what we just did to their establishment. And a car ride? How on earth do you clean a car seat? It can’t be removed like the couch cushions. A small,enclosed, uncleanable space is the worst spot for an accident, where the smells can just linger.

The incontinence changes the way we live life, especially for my mom. When we go somewhere, many changes of clothes are packed. If he is going to stay overnight – which rarely happens – many sets of sheets are packed. My mom always makes sure she uses only our sheets wherever we are staying because she doesn’t want to risk ruining someone else’s. We always have to be ready to leave, even if we aren’t finished with what we’re doing wherever we are. Sammy stayed the night at my house a few weeks ago and he was barely there 24 hours. He came with three suitcases. Two were full of things to clean with, sheets, extra clothes, etc. I spent the whole time double checking his diaper and making sure he wasn’t getting anything wet. I even took him to the bathroom every hour. Did he pee once? No. Some would think this is great, but how can someone hold pee for almost a full day? And how crazy is it that so many things were packed for less than a full day?

I think incontinence is one of the most infuriating parts of what my brother goes through because of autism. Sammy’s incontinence isn’t a problem just because of the hassle; it is also about his dignity. Even if he doesn’t care if he is wet or soiled, does he really need more things for people to stare at him and judge him? Thinking of how mortifying it was when I was little, when I would wet the bed or had an accident in public, how do we know that he doesn’t feel that way? How horrible would it be to be standing in a pile of your own urine – wouldn’t you want to just get out of there? He can’t!

Not to mention, using the bathroom is an everyday thing that humans do. That is basically being taken away from him because for some reason his autism doesn’t let him learn the skill. Aren’t the million other things he has going on enough? •

Paige Talhelm is 24 years old and living in Baltimore, MD. She is a graduate of Towson University with a Bachelor of Arts degree in Psychology and is now working towards her Master’s degree in Education of Autism and Pervasive Disorders at Johns Hopkins. She is also working with individuals with severe self-injurious and aggressive behavior on the Neurobehavioral Inpatient Unit at Kennedy Krieger Institute. She hopes to one day create a program for continued education, job searching, life skills, etc. for individuals with Autism over the age of 21. Please continue to read about her life as Sammy’s sister on her blog:

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