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Sigh, I knew eventually it would come to this. At one point or another I was going to write about poop. Like they say, it’s a dirty job but somebody has to…..

The dirty truth in this house is poop is a major factor in our lives. I truly believe that it’s the most exhausting, frustrating, infuriating ultimately defeating part of our lives. I could never, never, never have imagined this aspect of our lives before we became parents. If anyone had known to tell us the truth about how this would affect our lives, I think we might have made different choices. We said yes to a lot of things, no one even suggested we were saying “yes” to this. The truth is I’ve never REALLY talked about it. There’s only so much you can share with friends and family and then it just gets too gross. It’s a line I know I’ve already crossed and yet here I go again.

“J” was 4 years old when he came to us and he was not potty trained. He wore diapers. It took us over a year to “potty train” him. It was a long, exhausting year but getting to the point where he no longer had diapers and was using the bathroom on his own felt so liberating. It was a feeling that did not last.

After almost a year of being potty trained, Jay began having “accidents”. By accidents I mean he was pooping in his pants. At first we were so taken by surprise we didn’t realize it was a trend. To get over this “stage” we did everything we could think of. We used sticker charts and other behavioral techniques with no luck. We tried punishments, no luck. We tried to have him clean himself – that was just a nightmare for all of us. Asking a child with CP to clean himself is just asking for poop smeared EVERYWHERE.

We went to doctors and found yes there were some medical issues contributing to his toileting issues, but the ultimate solution was not medical but behavioral interventions. “J” is 13 and he still has “accidents” not every day, but often enough to make us want to pull our hair out. The thing is, it’s gross. It’s beyond gross, it’s make-you-gag disgusting. It’s washing poop out of underwear, pants, socks, rugs, floors sinks, you name it I’ve cleaned poop off it. And, while I’m being candid, think for a minute what cleaning up the poop of a 13-year-old would entail. This isn’t anything like changing a baby’s diaper.

Besides the disgusting factor the fact that this continues to be an issue for “J” that we can’t solve is not just exhausting and frustrating it’s really sad a scary. We spend a lot of time worrying about “J’s” future, trying to prepare him to be as independent as possible, and the truth is, if he can’t be responsible for his own bodily functions there isn’t much hope for anything else. If this doesn’t improve, and there’s no indication that it will, “J” will never be able to function independently in the world and that thought is so hard to bear.

“J’s” issues are only half the story. “K” is also 13 and is not potty trained, and probably never will be. She wears diapers, and at this point I’m actually buying adult diapers for her. Eight years ago when we got the call about “K” she was described as “not quite all the way potty trained.” The truth was she wasn’t even close to toilet trained and probably never would be. The other truth was she had a history of smearing her feces.

Smearing feces is unfortunately not uncommon in children with severe childhood trauma. Kids who have endured certain types of abuse will often smear their feces. Eight years later we’re still dealing with this. There is NOTHING more disgusting. The only way to prevent it is to be with her 24 hours a day. Any time she is alone, in her room, in the playroom, wherever, we’re at risk of this happening. I’ve tried all types of clothing options to make it difficult for her to get into her pants. We’ve scolded her and make picture reminders and nothing has worked. If she is feeling stressed or out of sorts or for no apparent reason at all, she will do this.

Scrubbing poop off my daughter’s hands, face, hair and body never gets easy. Throwing away toys, clothes and bedding because some things just can’t be cleaned is just a way of life. Dealing with the stench that invades our house and our child is never-ending. “This is crazy” I tell myself over and over again as I’m scrubbing. “Who lives like this?” I guess the answer is us.

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