"Want to take a shower?" times infinity

Janey slept very little last night. Instead, she spend the night waking up Tony and me over and over and over and over, each time asking, in the exact same tone of voice, "Want to take a shower?"

 After all these years, we still have no idea how to best respond to repeated questions like this. You would think we'd have figured out a strategy that works. The fact we haven't makes me think there isn't one. 

 The rules about a shower are something we stay pretty consistent with. During the day, Janey can take a shower pretty much any time there is time. She sometimes takes 10 a day. The water bill is high, but there aren't that many things Janey loves to do, and we are happy to make her happy. However, during the night, we have a rule that showers have to wait until 5 am. We don't want to be turning off the shower (she can turn it on herself) and drying her off and helping her get re-dressed over and over, and we also of course want to encourage sleep over constant showering. So it's not that she thinks that we might give in and let her take a shower during the night. We just don't.

 So...how do we respond to the endless requests? At first, we just say something like "No, it's not 5 o'clock yet. No showers during the night". This makes little to no impression on Janey. She will ask again, after a minute or two, forever. After a while, when we have been driven to that point, we usually say something like "We'll answer you two more times. After that, we aren't going to answer you if you ask for a shower". We try that for a while. Again, it makes no difference, except sometimes then Janey starts crying from our lack of answering, and we feel guilty. We try other things. Distraction? We try. It's hard, during the night, when we are exhausted, but we try talking with her about something else, snuggling with her to try to get her to sleep, letting her watch videos, things like that. It doesn't work. She will keep asking, in the tone that sounds like a recording, all night.

 At some point, because unfortunately we are human, we might answer in a tone that allows in a little anger..."NO! No shower! We've told you that a hundred times! NO SHOWER!" That does no more good than anything else, except for making Janey cry almost for sure.

 We've tried other exotic things over the years---a recorded answer we play on our phone, a social story about showers being only for the daytime, a written answer on paper we show her. Nope. No dice. No difference.

 You might be thinking now---what if they just gave in and let her take the shower? Well, during the day, we do that sometimes, and once or twice, on long, long nights, we've tried that too. She's be happy for the length of the shower and maybe 5 minutes afterward. Then...you guessed it...again, "Want to take a shower?" The problem is, I think, that Janey has a hard time thinking of things she wants to do. She truly doesn't want to do that many things. She wants car rides, showers, taking the bus to school, eating and videos. During the night, she does sometimes ask for car rides, but she does seem to get that when it's dark, that's not going to happen. We try to keep middle of the night eating at a minimum, but we sometimes do leave food for her to eat around. She can always watch videos. The bus to school---she does ask for that, but she seems to get pretty much that's only once a day. But showers...I think she knows that she COULD take a shower, even if we aren't allowing it, and when she is awake and restless and bored, a shower seems like a good idea. And her understanding of time and her lack of understanding our annoyance, keep her asking over and over.

 I have no idea how to deal with this issue. And I am very aware that many people like Janey don't talk at all, and that even a repeated question would be something their loved ones would love to hear, and I try to keep that in mind. And I am glad Janey is expressing what she wants. But at 3 am, after being kept up all night, when the question gets asked again---well, that's tough.

 This sort of thing is why I worry about the thought of Janey ever being cared for at a group home or the like. We love Janey extremely much. How would someone react that, although they might care very much for Janey, they might be a professional with a huge amount of patience, how would that person that isn't her parent react to a repeated question that even for us, making us half deranged? The scares me.

This kind of issue, the kind of problem that seems without a solution, is one of the hardest parts of being Janey's parents.  There isn't a guidebook for this kind of things.  Janey's mind, her understanding of the world, her wants and needs, are just not typical, not the mainstream.  Solutions that would work for those with less severe autism, like rewards or reasoning or even punishments or tokens or social stories or so on...not something that Janey gets or is helped by.  

So...today we are tired.  We are frustrated.  We are glad it's daytime, for now, and we can give in and let Janey take a lot of showers and car rides.  We look forward to school tomorrow.  We go on, loving our Janey, managing as best we can.