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Tuesday, April 17, 2012

Toilet Training, or not....

If you are looking for advice on toilet training your autistic child----well, you've come to the seriously wrong place. Janey is not trained. Not at all. And not for lack of trying....

I've tried everything. And her school has tried very hard too. I've tried the scheduled sit on the potty, the put her in underpants so she knows when she is wet, the potties all over the house, the rewards, the calm but firm changing of wet clothes, and I've also tried a very detailed regime I found in a book about toileting training kids with autism.

And how has it worked? I'd say Janey has peed in the potty about 10 times total, in her life. About the same with the other kind of potty use. I think those times were pure luck, or Janey in a rare mood where it worked out.

And what's the problem? Much of it is Janey's ability to hold urine for incredible amounts of time. When I was putting her in underwear, she would often wake up dry, go to school dry, not pee at school and come home dry. That would be sometimes 18 hours without peeing. The minute she walked in the door after school, she'd pee all over. Before you ask, of course I'd try putting her on the potty the minute she walked in. She'd hold it then until she was off the potty. Often, by this point, she was crying from the frustration. When I talked to her doctor about this, he was alarmed---alarmed enough to say we needed to stop trying to train her, that holding your urine like that can seriously damage your kidneys. We stopped all trying, as did school, and she went back to a slightly more normal peeing routine, and so we didn't have to go for serious kidney testing as the doctor had said she would if she kept up the retention. I think she's learned to hold in urine, but not how to let it out without it just happening. Or maybe not, as she did go once she got home. Perhaps she somehow got the message that peeing herself is seriously bad, and that she has to wait until she's home or in a safe place to do so. I don't think anyone at school would make her feel that way, but let's face it---changing a wet kid at school isn't fun, and fellow kindergarteners or first graders are going to talk. Not that Janey generally cares or understands that kind of talk....If I sound like I'm talking in circles, I am. Because I just have no clue how to train Janey. Every book seems to assume that if you take a child to the potty often enough, they will eventually pee in the potty, realize they like it, and keep it up. They don't seem to reckon on near world record urine holding in.

It's frustrating, of course. It seems like toilet training is something that most kids at her level do get a lot more than her. But I could be overestimating her. Or it could be she just doesn't care. She isn't going to use the potty to please people, there aren't any rewards she cares a lot about, and so for her, it's a fine arrangement. The book that said it had a truly no-fail method for training kids on the spectrum was so far off for her it made me laugh. One of their big methods was to get plain colored underwear and draw a picture on it of something your child really likes, and then they wouldn't want to get the picture wet. Well, first of all, Janey loves to get things she likes wet. Putting things in water is one of her favorite pasttimes. Secondly, she very rarely notices what's on her clothes, to say nothing of her underwear. Thirdly, I can't really think what she likes enough for that. She likes some songs a lot, but she likes hearing them, not looking at pictures of them. She likes the Care Bears, but in a very specific way. And she already has Care Bear underwear (as well as lots of other characters, because that is a common piece of advice---get her excited about cool underwear. Yeah, right.

I'm sure I'm partly to blame. When I try a method for a month or two without any success, I do give up. I was also quite shaken by my doctor's words. He is the ultimate non-alarmist doctor. After Freddy had a near-fatal asthma attack, he summed it up by saying "we need to try to have that not happen again". It's not that he doesn't care, or isn't a good doctor, he just is low-key. And he sounded alarmed about the kidneys.

And so no, Janey isn't trained. It's not that hard for now. Since even now she only pees 2 or 3 times in a 24 hour period, we aren't changing her all the time. Her bowel movements are even less regular. But it feels like a failure sometimes. But it feels that way to me, not to her. Like a lot of things in her life.

3 comments:

Yuji said...

Thanks for visiting my blog, Suzanne.

Your daughter is adorable. I wish I had some words of wisdom for you. It sounds like you are doing all the right things to potty train... it is probably a good idea to back off for now.

Best to you!

Kim said...

Boy does this sound familiar! The book " everybody poops" was a bit of a miracle for us. I don't really know why but I think she'd relax enough while looking at it she'd finally go. Have you seen the book? It's inexpensive and all my kids looked at it or I would read it to them...

Jaime Langdon said...

Hi I was trying to figure out a way to contact you by email or something, because I also have a daughter who is almost 12 with severe autism and I was looking for information on kids with autism that hold urine and I came across your blog about your daughter and my daughter and her sound identical, my daughter is doing the same exact thing yours does. Every single detail is identical, I was curious if you had any luck in this area yet. Trying to figure out how to help mine!