The Christmas and Beyond Report

We're in that strange week, the one between Christmas and New Years.  Tony has the week off---he usually takes this week off, and the boys are both home, and it feels like an in-between time, a neither here nor there time.  That isn't always easy for Janey or kids like her.  So, how it is going?

Attempting to interest Janey in a present.  The cat is about as interested as she is.

Not badly, really.  Compared to other years, it's going quite well.  Christmas itself was a nice day.  It was nice in that Janey didn't cry, didn't melt down, didn't have any fits.  She also didn't really participate in anything Christmasy, but we can handle that.  She wouldn't take things out of her stocking, wouldn't open the few presents we had for her, and wasn't interested in them once we opened them.  I think we were all okay with that, though.  The boys liked their presents and we all had a good day.  I wish it was more of a special day for Janey, but that's not a huge deal.

This week, Janey is also doing fairly well.  She's going for many, many rides in the car, her preferred form of entertainment, and she's doing a lot of cruising YouTube Kids.  She's been somewhat tired out, and has been napping some, which is not her usual routine.  Overall, she's been mellow, and somewhat withdrawn.  Her talking has been at a low point for a while now, and that isn't changing.  She isn't saying much beyond the routine phrases asking for a car ride, soup (boiled kale) or salami, or help putting on a particular TV show.

I wonder sometimes if we are settling into the next phase of life with Janey.  It's a lot easier in many ways than it used to be.  The worst of Janey's rage and intensity seem to be gone for now.  However, along with that, she seems slowed down.  She isn't learning new things, or saying new things, or making leaps forward.  Progress with Janey was always slow, and often ebbed and flowed, but this feels different.

Janey with her brothers and our friend at our annual Christmas get-together

Maybe I need to think about this differently.  We can do a bit more with Janey now than we used to be able to, and this could be an opportunity for her to experience new things.  For example, our traditional Christmas Eve at our friend's house was cancelled due to their illness, so we went instead on Sunday afternoon.  Usually, Janey falls asleep early in the evening, but since this was afternoon, she was awake the whole time we were there, for about four hours.  At times, it would have been inconceivable to think of spending that long someplace other than home as a family, but although we did need to take Janey for a little car ride and a few walks, she handled being there all that time without meltdowns or screaming.

Things could change on a dime.  Janey could go back to the tougher times, or stay calmer but get more responsive and talkative.  For now, though, I've been thinking a lot about times people told me it would get easier.  I doubted they were right.  I didn't think it ever would.  But for now, it has, and I hope I can say to others that might be having very hard times right now---it truly does get easier.  I can say that from the perspective of someone who knows absolutely how tough the tough times can be.  Hold on.  Hang in there.

It's the middle of the night; I'm a little fed up and I need sleep now

Janey has been up for two hours, after going to sleep grouchy about 9.  It's not a lot of fun.  Tony is currently trying, as I write, to get her to sleep, and I am trying to not project, to not think about how tired I will be tomorrow, to not think about how this might be the start of a hellish cycle, to not think about the many years ahead that right now stretch out endlessly, full of sleepless nights and frustration.

Janey has been making a long string of requests posed as questions---

Do you want me to get you an onion?

Do you want me to turn on the light?

Do you want me to pour you soda?

Do you want me to watch Kipper?

It's pronoun reversal middle of the night autism demonstration time.  We answer no to all, without bothering to try to correct the format of the speech.  It's not the time to worry about semantics.  

Janey is jumping up and down and reciting a favorite Kermit dialogue, Kermit arguing with the Count about what an elevator operator is supposed to do---"You're SUPPOSED to take people to whatever floor they want to go to, and I WANT TO GO TO THE SEVENTH FLOOR!"  She laughs hysterically, and recites it again.  After the 10th time or so, it seems kind of funny to me too, in an crazy sleep deprived way.

We try reasoning with her, which is useless.  We try bargaining with her "If you will stay on the bed, you can play with your iPad.  If we get you water, will you sleep?"  She agrees to anything, but it's meaningless.  These are not binding contracts, and she knows it.

My grass pollen allergies, delayed by the cool weather, have chosen tonight to kick in full gear.  I am sneezing and sneezing, each time causing Janey to recite something funny she heard one time---"A-shoe, A-sandal, A-sneaker!"  She cracks herself up every time.

I send an email to cancel plans I had for tomorrow.  It will be a napping day.  I wonder as I often do how Tony makes it through the day.  I wish he'd call in sick sometimes when he doesn't sleep.  I worry about what all this sleep deprivation does to him.  Isn't that what they do to torture people?  In the night, in my own state, it becomes a scary concern.  Thoughts get dark when you are tired and can't sleep.

The least affected by all of this is Janey.  She never seems tired the day after this kind of sleepless night.  Her system doesn't seem to work that way.  She doesn't even sleep late the next morning, usually.  She's up at the regular time, ready to rock and roll.

I am trying to keep positive.  I am going over in my mind all the other sleepless mothers out there, and the ones in far worse positions than me---awake in a hospital watching a sick child, awake worrying about a child that hasn't come home, awake because they don't have a bed.  But sometimes, the contrary part of me thinks about all the people that have it easier instead.  That's not useful.  I think about articles I read where a parent is freaking out over bad grades, a sassy mouth, not eating vegetables.  I wonder if they realize what a miracle they have---a child than can talk, can understand, a child with a bright future.  Sometimes late in the night I don't think nice thoughts about those parents, even though I am those parents, with two sons that have bright futures.  

Janey is still awake.  She is still jumping.  So I will think about the parents I know must be out there right now, staying awake with their own autistic child.  Parents living my same life.  I wish I could talk to them, right now.  That we could all feel less alone in our own houses, getting through our own nights.  I hope we can all help each other make it through the nights.

It's the middle of the night

This middle of the night post is brought to you by Janey having woken up at 3:30am.

I have to be fair---most of the time, Janey sleeps fairly well.  I'd say 6 nights out of 7, she goes to bed at around 8pm, sleeps through the night and wakes up at 6am, when the rest of us do.  We are not a late night family, and that schedule works well for all of us.  However, the 7th night is pretty tough.  I know there's a lot of autistic kids, and non-autistic kids too, with bigger sleep problems, but being awake in the middle of the night doesn't do much for your sense of perspective that way.

When Janey has a rough night, it follows the same pattern almost every time.  I can barely remember a time she had trouble getting to sleep.  The 8pm or a bit earlier bedtime is almost completely consistent (knock on wood).  But on the rough nights, she wakes up around 2 or 3am.  She is wide awake, and she wants the day to start.  There is absolutely no keeping her down.  She seems to feel it's morning, and the rest of us are slackers.  She wants to start the morning routine---have some breakfast custom made for her, watch her TV shows, maybe go outside, sing or scream loudly---all that fun.

This is another area where this is no parenting guidebook that works.  If a child is eight, all advice centers around reasoning with them.  You are supposed to be able to firmly say "It's night now.  Go to sleep." and then if they don't, telling them they have to at least stay in their room and leave you alone so you can sleep.  That is not possible with Janey.  She can't be left alone---ever ever ever.  If she's awake, we have to be awake.  The fact we want to sleep has no impact on her.  She doesn't do things to make us happy.  She's not going to think "Gee, it just isn't fair I should keep my parents awake all night"  She isn't influenced by our disapproval, or even our anger.  She is like a one year old, but with one big difference---you can't put her in a crib.

So what do we do?  For a while, we still try to keep her down.  We try to keep her in bed.  We point out it's dark out, and it's still sleeping time.  Ha.  That's a good one.  She continuously gets up, flips on the lights (that's always fun when you're dozing off), checks if the fridge is bungee-corded shut or not, checks the doors to see if she might be able to pay her uncle upstairs a little night visit, tries to get the TV set up for her shows...and of course we are up by then.  And we resort to TV.  We put on one of her favorite shows, and get on the couch and try to rest while she watches it.  We can't go to sleep, because she can't be unsupervised, but we can rest a little.  And hopefully, she gets into the show.  More often, she decides after a little while she wants a different show, or some strawberry milk, or "snuggle on Mama's bed" (which would seem hopeful, but it never results in sleeping)

The funny thing is that this night wakefulness never bothers her the next day.  People say "oh, I bet she'll nap!" but she doesn't.  She never seems the slightest bit tired from being up at night.  We are, of course.  While she's at school, after a night like tonight, I often nap.  Lovely, wonderful naps.  I love them, but I hate them, because they use up the limited time I have to myself.

And so, here we are.  Janey is watching Kipper.  I am fending off her requests for strawberry milk, and fending off the overwhelming urge to sleep.  Luckily, it's getting closer to 5, when I often get up anyway.  And so we go on.