My dear friend Michelle and I talk on the phone quite a bit. Her amazing daughter Lindsey is five years older than Janey, and I can't even start to tell you how wonderful it is to have someone to talk to that has blazed the trail we are taking with Janey. She said something last week that struck me hard---that she will never say that she is done with the whole "training" process.
I used to think that there would be an endpoint with the whole potty-training deal. There was with the boys, and there is with most kids, but with Janey, and I would guess with others like her, there just isn't. It's not something I talk about a huge amount, as it's not one of the more picturesque parts of autism. But it's a big part of it.
Right now, at age 12, Janey almost always uses the toilet for bowel needs. That is wonderful. I won't get into what everyone with a child like Janey probably is already too familiar with, but let's just say that the times Janey came to me covered with what was not chocolate, and further investigation showed that this same issue had affected huge areas of the house....well, you know how wonderful it is that she is trained in that way.
For urine, Janey uses the toilet in some circumstances. She wears underwear to school every day, and rarely has an accident there. Out of the house in general, she does very well. On our weeklong trip to Ohio, when she was in the car for long hours, there was barely an accident. Part of this was her enjoyment at telling us she needed the bathroom, because it caused us to stop and get to see some lovely highway rest areas and fast food joints, but hey, whatever it takes. At home, though, it's much more of a chancy thing. I'd say she uses the potty about 50 percent of the time for urine at home. it's the other 50 perfect that is very, very tough.
For whatever reason, Janey wets the bed most of the time she doesn't use the toilet at home. I'm not talking during sleep here. We put her in two pullups at night, and we probably always will. I'm talking when she's awake. She will go over to the bed and wet it, in the daytime. As you can well imagine, we are not huge fans of this. We have tried everything we can think of to discourage this behavior. We take her to the bathroom on a very regular basis, and try to get her to go. We do everything we can to keep her off her bed when she might need to go. We talk to her about it, tell her social stories, beg her, and yes, at times, we have given into to despair and yelled at her about it. This is usually when we've just taken her to the bathroom, begged her to go, and she hasn't, and then she goes directly to her bed and before we can stop her, wets it.
This week, both Tony and I gave in and got upset with Janey for the daytime bedwetting. We are bone tired of changing sheets, washing blankets, spraying odor control things, trying desperately to keep her bed a place you'd want to sleep. I don't like speaking to Janey sharply, but I have to say, I'd challenge a saint to not sometimes get a little annoyed after literally years of this.
Coincidence or not, Janey has been doing a fair amount of crying this week. She cried a lot after school last night, and she woke up crying this morning. Nothing was helping, until I said "are you upset about the bed, about peeing on the bed?" Janey echoed "WERE YOU UPSET ABOUT THE BED!" And I had a flash of thought, thinking "this isn't worth it. Would I rather keep dealing with the bedwetting, or would I rather have Janey tense, upset, crying, over something that for whatever reason she seems unable or unwilling to stop doing?" The answer was clear. I'd rather deal with the wet bed for a million years than have Janey hysterically upset, biting her arm, crying. I don't know why she does what she does with the bed. But I know that I can control how I react to it. I can keep doing the positive things---taking her to the bathroom a lot, praising her for using the toilet, encouraging her. But if she does do the daytime bedwetting, I can deal with it in a matter of fact way. I can keep myself from getting angry. I can just accept that for now, that is how things are.
I told Janey "I'm sorry I got upset about you peeing on the bed. I like you to pee in the potty, but if you forget and pee on the bed, we'll clean it up. You don't need to cry about it. It's okay" Janey gave me one of the looks I live for, the look of understanding and connection, the look that says I've hit on something. And she smiled, for the first time of the day.
I wondered, after Janey went to school, if I was doing the right thing. Then I stopped myself from the worrying. I reminded myself, as I've learned to do, that there is no right way with Janey. There's no book that tells how to parent her. I'm writing her book. I don't know how the chapter on toilet training will end. It might never end. But it's not the most important chapter of the book, and keeping that in mind, we'll do the best we can, both Janey and us.