I used to dream a lot of the day I could say "Janey is toilet trained!" I pictured it like that, a certain day, a day I could leave pullups out of our budget forever and buy lots of cute underwear and just look back at the long, long years of non-training and laugh. But like a lot of dreams when you have an autistic child, it isn't quite coming true like that.
Janey is sort of trained. I feel like knocking on wood even saying that. It's better than not trained, for sure. But it isn't complete, and I don't know when it will be. Gradually, gradually, gradually, over the summer, Janey figured out how to use the potty---not the regular potty, but one we set up for her in the living room. We have only one bathroom and it's quite removed from the rest of the house, back through William's bedroom (we have a pre-Civil war old house, and the bathroom was an afterthought, I think) and with Janey's propensity to do mischief (which, not to get vivid, has included playing in the toilet), we needed something closer for her to use. That itself went against any guides I read, but those guides don't know my house or my Janey. Janey seemed to finally get the feeling of having to pee, and how to release the pee in a potty. She was always able to hold it, that was never the problem, but the crucial releasing step seemed to kick in. Over time, she was hitting the potty once, then twice, then on some days 3 or 4 times. But almost every day, she also didn't hit it once or twice. She also seems to have no control at night.
When school started, she went back to her pattern of holding in pee a lot. But even there, I am getting more reports of her successfully using the potty. She has a wonderful aide in her room who takes her on a regular schedule, and once in a while, she'll actually go. She's also used the toilet now and then in other situations---at other people's houses, for example.
But still, I can't proclaim her trained. I've thought about just getting rid of the pullups, and over the summer, I tried that now and then. But it seemed to send her backwards. She would hold the pee all day, not wanting to have an accident but also somehow not able to get that wearing underpants would make it EASIER to use the potty, not harder, and then would pee all over the floor. She seems finally to not like to wet her clothes, and the the nervousness of not having a pullup on seems to take over her mind---she usually cries when I put on underwear. So for now, we still use pullups. We still remind her, which sometimes works, but most of the time when she is successful, it's totally on her own. So that dream moment is delayed for now. And it might be delayed for a long, long time more. Janey does things the way she wants to. Nothing at all worked until she was almost 8, which when talking to other mothers of autistic girls, seems like the magic age. It still seems like a miracle when she uses the potty. So I'll take it, for now. Like a lot of dreams, what you actually get might not be what the dream was like, but we live in reality. Autism seems designed to remind us of that.