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Tuesday, March 8, 2016

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.


David Fee said...

Nights like that remind me of this quote.

"But we -- pity us! Oh, pity us!
We wakeful; ah, pity us! --"

My daughter gets up in the night laughing and talking loudly to irritate all. She likes to eat Lucky Charms at night. She just eats the colored bits of cereal. She like playing with noisy toys at night as well.

Courtney Megliola said...

Suzanne- you and your husband are truly inspiring. I'm doing research for work and came upon your blog. Janey does sound like a very cool kid and from the posts I've read, you guys are amazing parents. I work with LEGOLAND Discovery Center Boston and Blue Man Group Boston and both will be having sensory friendly shows that we'd like to invite bloggers (and their children) to experience. Please email me if interested- Thanks for sharing your story. Very informative and beautifully written.