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.

Three Surprises in Ten Minutes

Janey has been tough lately.  She's been wearing us out, trying out patience, discouraging us a good deal.  Last night was no exception.  She was cranky, volatile, angry, and we were tired out of our minds.  And then, within a very short period of time, she surprised us with her unique and her quirky language three times, and left us laughing instead of crying.

The first incident stemmed from her love/hate relationship with "Little Bear".  Little Bear is one of the mildest TV shows you could ever watch, a sweet story of the adventures of a human-like bear, his family and various other animal friends.  We really don't get why Janey is so worked up by it.  She asks to watch it constantly.  When we put it on, she will watch about 5 minutes of it and then blow up, always.  She freaks out spectacularly and gently or not turns off the TV.  Last night followed that pattern.  She asked for it, we said as we always do "But that show makes you very upset!  Do you PROMISE not to hit the TV or scream if we put it on?"  Yes, we are suckers.  We know her promises are not sincere, but we give her another chance, over and over.  We put it on, and the same thing happened that always happens.  She screamed after a few minutes and slammed her hand into the TV to shut it off.  Tony told her to go to bed (it was close to bedtime) and said "I am not proud of you!"

That's when she surprised us.  She said back, in a voice familiar to parents of preteens everywhere "I am not proud of you either!"  We looked at each other astonished, and couldn't help starting to laugh.  It was so unexpected, but at the same time, so typical of a child her age.  I'd never heard her use the world "either" before, and she rarely responds to anything in that kind of sentence.  We were frankly delighted.

However, she was still supposed to stay in her bed.  We lay down with her, trying to get her to sleep. She faked being ready to sleep for a few minutes, and then surprised us the second time.  Using a sing-songy silly voice, she said "I have to go potty.  I want to make a stinky.  I need to make a poopy.  I want to have a....(imagine her going on and on for about 10 different words that are euphemisms for needing to use the bathroom)"  We had no idea she even knew some of those terms.  And we were fairly sure she didn't actually have to use the bathroom in that way, as she already had just a bit earlier, but she knows the one thing that will always allow her to get out of bed.  So I took her in, and of course, it was a ruse, but still...we again were shaking our heads and chuckling.

When she was back in bed, surprise number three came along.  She said, in a slow and careful voice "acetaminophen".  We had given her generic Tylenol over the weekend when she was banging her head and it appeared she had a headache, and she had learned the name somehow from our talking to each other.  We asked her if she wanted acetaminophen, and she said yes.  We were, again, shocked.  It's not an easy word, and not one she's heard a lot.

All three of these happenings illustrate what is so fascinating and at the same time frustrating about Janey.  She doesn't learn in traditional ways.  You can plug away at trying to teach her the most basic things for literally years, and she shows no sign of having learned them.  Or she learns them and then seems to forget them, like with writing her name.  But inside her head, there is so much going on, and when the time is just right, it comes out, giving us a tantalizing glimpse of a Janey we wish we could see more often.

A better weekend, with guesses why

I've said many times that Janey's moods often seem to have no rhyme or reason.  Of course, that doesn't stop me from trying to figure them out.  I have to.  If there's any pattern, I have to try to find it.  I think I do this more with bad moods than good ones, but I'm trying to make more of an effort to figure out Janey's good moods, as after all, they are the moods I want her to have more of.  This weekend was mostly a good mood weekend.  That's not to say there weren't crying moments, or hitting moments, but overall, Janey's mood was quite good.  So...why?

I have a few theories.

One factor might have been that we made an effort to get Janey out of the house for a good period of time each day.  These weren't exciting trips.  They were shopping trips with Daddy, going to a lot of different stores, and a trip to take William back to college.  But when we told Janey she was going to go for a ride in the car, each time, she was thrilled.  She is an easily bored kid at times, and she craves being places other than here.

Another possible factor----I tried, each night and each morning, to outline what the day to come would be like.  I think one problem on the awful day from hell last Thursday was I didn't do enough to explain to Janey why she was home.  I couldn't at night---we got the call about school once she was already asleep, but I think the minute she woke up, I should have explained very clearly that she was going to be home, Daddy was going to be at work, and her brothers were home.  Many people have suggested visual schedules for Janey, and we have tried them, as they have at school, but Janey simply isn't very visual.  I have never once seen her look at a visual schedule unless I directed her to.  But anyone that knows Janey knows that she remembers everything she hears.  She might not give an indication of that, but she listens very well.  So I've started saying each night something like "Tomorrow is a school day.  You will go to school, and Daddy will go to work.  Freddy will go to school, and William is away at his college school.  You will come home, and Daddy won't be home yet.  Freddy will come home, and then Daddy will come home."  I tell it slowly and in parts, and repeat it a lot, and I think this helps Janey know what to expect.  So she knew, this weekend, that Daddy was home and she was home.

We also had sunny weather, which we haven't had much of this winter.  Janey loves the sun.  She somehow remembered a song I can't recall playing for her, Katrina and the Waves singing "Walking on Sunshine" and she sang that a lot this weekend, with a look of joy on her face.

We also, as much as possible, gave Janey a lot of concentrated attention.  For whatever reason, she is no longer much interested in TV or videos.  I'm sort of glad about that, but I admit, we got used to that being a lot of her day.  So we are needing to step up to the plate and fill in that time.  Luckily, Janey has gotten very into books lately.  This is a dream come true for me.  We spent a large part of the weekend reading.  She loved hearing "McElligot's Pool", an old Dr. Seuss book, and we read a lot of other Dr. Seuss books.  We also played toys a lot.  I put all of Janey's toys in one big huge bag, and started doing something I call The Lucky Dip---just grabbing a handful of them and playing with what I get.  This keeps us from getting too stereotyped with the play, which is good because if you do something once with a toy, that becomes for Janey what always must be done with it, and she gets upset if I change the routine.

Food, of course, also helps.  Daddy gave Janey huge amounts of food she likes, mostly in the morning, which is her preferred schedule.  The bacon, chicken, greens and pesto were flowing freely.

And, maybe, the mood stablizer is doing something.  I don't know.  It's so hard to isolate out what medication might be doing or not doing, just like it's hard to figure out if anything I've written here had anything to do with Janey's mood, or if she just somehow internally felt happier.

You will forgive me if say that I don't think the mood will last.  I can hope it will, but that is not usually the case.  I think the best we can do is try to figure out how to extend the good moods when they occur and to shorten the bad moods when they happen.  So I'd be thrilled if this mood lasts a few days into the school week, even!