"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.

Manic no sleep night

I hope you'll forgive me if any of this blog post doesn't make sense.  I'm operating on very little sleep.

Janey had one of her no-sleep nights last night.  These seem to be happening every month or two, but no matter how often they happen, they are impossible to get used to.

We're starting to be able to see the sleepless nights coming, though.  Yesterday afternoon and evening, Janey was very, very happy and excited.  I put a picture on the Facebook companion page to this blog, showing her huge smile as we left for a car ride. I'm including here three other pictures I took of her.  They all show the look, the look that foreshadows a very long night.   When bedtime came, and her usual bedtime is 7 to 7:30 (her choice, we wouldn't make her go to bed that early, but she gets up early and usually likes a lot of sleep), she was still hyped up.  She got on the bed, watching videos on her iPad as she usually does going to sleep.  But she didn't sleep.

Watching her on nights like last night, there are signs.  Every movement of her body is exaggerated and somehow stiff.  When she moves around, it's with big, wound up moves.  Her eyes get an excited look we don't see other times.  And she has an attention scan at these times of about 10 seconds.  She switches videos on YouTube at a pace that seems impossible.  As I listened last night, it almost seemed like she was using the videos as sound clips in some kind of rap song, switching back and forth and always stopping the audio of each clip at the exact same place to move to the next one, over and over and over.

The hours passed.  We took turns laying down with her, and then both did.  When we got up, she got up, running around the house and asking for things---rides, showers, walks, food, videos.  She'd go back to the bed when we asked, but would get back up in seconds.  If we stayed with her, she'd stay on the bed, but in the hyped state.

At times like this, she constantly re-arranges things around her.  One of the things she tries to re-arrange is my arms.  Somehow, she doesn't want to see my arms when she looks at me.  Her preference would be to have them behind my back, where they are out of sight.  Time after time, she moves them back to where she wants them. 

Around one in the morning, she got a foot cramp, and frantically said "Does your foot hurt?  Does your foot hurt?"  I could see her foot cramped up, and told her to stand up on it to help it.  She did, and jumped up and down for about 3 minutes straight.  I got her back into bed.  She started asking over and over "Angelina?"  Earlier in the night, I had typed Angelina into her YouTube Kids search area, and when some pre-populated choices came up, I had her pick "Angelina Ballerina"  She wanted to do that again.  I did it a few times, but a few times was never going to be enough.  I know I could have done that hundreds of times and she'd have still wanted more, as part of a routine that would include the quick switching of vidoes in-between.

At two, I was no longer able to keep my eyes open, and Tony took over.  She didn't sleep, of course.  She got on the bus happily at 6:30.  She is at school now.

These nights are awful, and we have no idea what causes them.  It's possible she got her hands on some chocolate at school, it being the Easter season.  But it could just be one of her periodic manic times.

We give her melatonin, most every night.  It works well, except when it doesn't work at all.  When she got the foot cramp, we gave her some Motrin, in case she was in pain she couldn't tell us about.  I don't know if it had any effect.  I am pretty sure nothing we could do or say or give her would make a bit of difference on manic nights.  Her own internal demons or angels or hormones or whatever are far stronger than anything external, at times like these.

During the day, when we've slept, we, and I mean the larger "we" of other families living this life, can be the kind of parents that match up with the books, blogs, advice, standards, of autism parenting.  At night, when we would do almost anything to just be able to sleep, we can't.  And that is where I don't think anyone who hasn't spent a night like our last night can really, truly, deeply get this life.  It's the initiation into our club.  It's the shared tribal ceremony.  It's the bonding experience that by its very nature gets experienced away from the others it's bonding us with.  I try to keep in mind, during those endless nights, the rest of you out there.

Please, Janey, sleep tonight.

The Very Bad Night

Trying to keep Janey happy 

Janey's great mood came to an end this weekend, a crashing, discouraging end.  When she got off the bus on Friday, I could tell she wasn't doing well, and within a few minutes, she was biting her arm and crying.  By Friday night, she was in a full-blown bad mood.  All day Saturday and Sunday, she cried, screamed, bit herself, asked frantically for one thing or another and then quickly changed her mind and asked for something else, just plain was severely unhappy.  We kept up our weekend routines, the ones she usually loves.  The big thing we do is take her for lots of car rides with music, and we did that.  We've taken to choosing one town to take a big drive to each weekend for the long ride of the weekend, and we went to Duxbury, a coastal town, on Sunday.  It was lovely, but Janey was very unhappy.  On the way back, she kept falling asleep---a very unusual thing for her to do, but she didn't seem sick.

Sunday night into Monday morning will go down in our personal family history as The Very Bad Night.  Janey woke about 1 am, after going to sleep about 8 pm.  She woke in a hideously bad mood. She was screaming and crying endlessly, and keeping up a long line of requests that immediately were cancelled out by new requests----"I want Angelina Ballerina!  I want Kipper!  I want Cat in the Hat Knows a Lot About That!  I want cheese!  I want salsa!  I want soup!"  Now, when we are awake and rational, we know that none of these requests are real, that she is just showing in the way she can that she wants something to make her feel better, and she doesn't know what that is.  But in the middle of the night, we are in a different state.  That is the part I think it's hardest for those who don't have full time care of a child with autism to understand.  Even those who work with kids like Janey, who are wonderful at understanding them and caring about them, don't quite get what it's like when you have slept almost not at all and you are trying to deal with your child and keep her happy and get some sleep.  You aren't thinking straight.  We kept trying to do what Janey wanted, hoping against hope she'd relax and sleep, and of course she didn't.

By about four in the morning, we had entered a state that is hard to even describe.  Tony had been off and on a little sick all week, and he was tired beyond belief.  I kept encouraging him to go into another room and sleep, but he could see I wasn't up to the sole parenting task, and he was probably right.  We both were just tired beyond words.  And Janey kept screaming.  We sat there together, Tony and I, and just were in despair.  We had that feeling that only comes during the night, the feeling that we just couldn't see how it would be possible to keep living this life, but knowing we had no choice.  You don't think, at times like that, that it's ever going to get better.  You don't even fully think the morning is ever going to arrive.

The morning did arrive, and by that time, by the time Janey got on the bus, she had somehow cheered up. Tony stayed home and caught up on sleep, and finally hopefully kicked off his illness. Janey got off the bus in quite a good mood.  The mood lasted all afternoon and evening, and she woke up this morning as chipper as could be.

We know the good mood could go away again at any time, but it is surprising to see it replace the bad mood at all as quickly as it did. Janey's moods usually last at least a week.  We are trying not to get too hopeful, because it's too hard to then lose that hope.  That was part of what was happening on the Very Bad Night---we had come off a few weeks of a happy Janey, and it was so incredibly tough seeing her at her worst again.

It's during those awful nights I most think of the rest of you living this life.  We are very alone, at those times, but I know we aren't totally alone.  All over the world, there are other parents awake, dealing as best as they can with their kids like Janey.  There are other parents living the life we live, the life that is at times incredibly, heartbreakingly tough, tough for the kids and tough for the parents. Next time you out there have a Very Bad Night, next time we have a Very Bad Night, we can send a thought to each other, a wish to make it to the morning, a reminder that nights, no matter how awful, do come to an end, and the morning starts a new day.