Sleep.....

......oh how I cherish it.  

When we first brought Nea home, it was quite a struggle to get used to that whole newborn routine.  Up for 2hrs, sleep for 2 hrs, up for 1hr, sleep for 3 hrs, up for 1.5hrs, sleep for 1 hr.  At one point I really thought I might go insane.  Humans aren't meant to sleep like that.  And lack of sleep really does wonky things to your brain, your perceptions and quite frankly, you're reality.   I think that's why when you see a new mom and you ask her how she's doing, she responds with a wide-eyed look of "Oh it's fantastic!"  She has enough sense about her to know that she's not supposed to say, "Holy Crap!  This is insanity!  I think I need psychiatric help!"  I'm convinced it's the reason that Moms don't seek out help for post-partum depression.....she just is not living in this reality!

Nea was any typical newborn.  And as she got older, she started to settle into bigger sleeping chunks for which I was very grateful.  Although we've all had that "I've-been-asleep-for-4hrs-somethings-wrong-my-baby's-dead" panic attack at least once or twice!  

However, we struggled with Nea's sleeping on any schedule even after she was a year old.  Everyone kept telling me, "get her on a schedule", "read books so she can wind down", "make her get in bed by 7:30", "establish a schedule", " make her tired."

And I went back to "insanity" really quickly.  No matter how hard we tried.  No matter how many routines I created.  No matter how long I did or didn't let her nap during the day....the girl's sleep schedule was wonky.   She would sleep 5-6hour chunks, wake up for 3-5 hours, then sleep another 6-8 hour chunk.  She was getting 12hours a day, but it wasn't all together.

And I couldn't figure out why, and everyone's well meaning advice was making me feel really bad about it all. 

Eventually, the routine we settled into was...."no routine"  I can't explain it, it just was what it was.  

Well, it turns out, sleeping is one of those "fine print, fun things" that goes along with having autism.  Many autistic kids have sleeping disorders.  Either kids have trouble falling asleep, or they can't stay asleep when they do.  There are a lot of theories and research that's going on as to why this happens.  Some believe that the brain is just in "fast-forward" mode all the time and can't really shut off.  Some think that many of these kids don't recognize social cues and therefore don't understand what a "bedtime routine" means or what happens at the end of it.  Some research has shown that these kids are missing melatonin in their brains.  Melatonin is released when light is diminished, which is the body's internal trigger that it's time to sleep.  

The fact is, no one really knows.  Maybe it's a combination of everything!  

These kids are the crashers.  They go, they go, they run they play.....and then you find them asleep in a closet.  Essentially the body just does a  "sorry sweetie, we gotta reboot" and sleep takes over!  

We've tried many things as our friends suggested.  We've even had the rule "no sleeping past 5p.m." and then woke her up.  Let me set the stage for you.....

Child who has difficulty communicating, who is exhausted, awakened from a sound sleep.  Right, you get the picture.  It's not pretty.  In fact, it's so not pretty it almost seems like some sort of torture.  I think water-boarding would be more humane than when we were doing that for about a week!

Sleep is one of those things that the Occupational Therapist is helping with.   One of the things we noticed on vacation is that Nea DID sleep for 10-12 hours at a time.   The therapist was very intrigued by that so we discussed in detail.  Here's what we came up with:

• Air conditioning unit was on
• Room was "chilly" where you wanted to snuggle under blankets
• Big, heavy comforter
• Big, fluffy pillows
• Room was pitch black

Both the OT and Dr. Twyman recommend that we "recreate" the hotel room environment to see if that doesn't help get her to sleep at longer intervals.   We already had a window unit in the bedroom so we had the white noise and it was chilly.  I cover her up with a heavier blanket (some of these kids need a weighted blanket-it's that whole sensory perception thing) and I bought new pillows that are pretty enveloping and fluffy.  The only thing we haven't done is the black out curtains.

I have to say that for about a week or so now it's been very good.  She's been sleeping about 8-10hrs at a time which is a great improvement!  

This morning however, I was up at 4am with her.  For reasons I have yet to figure out, she was up and talking to me at 4am.  I just ignored her, put blankets on her and snuggled her.  But she was not having it....and we finally got out of bed at 4:30.  We came downstairs, did a diaper change, she played with some trains and then at 6 am she went back upstairs on her own, climbed into bed and slept 2 more hours.

What the hell?  Now I feel like a CSI agent trying to figure out the mystery of what woke her up in the first place....how can I prevent it from happening again....and how did she have the message to go back to bed!? 

Nea at 6:30a.m -putting herself back to bed

If you know someone who has a child with Autism, you might hand them a cup of coffee or a can of Red Bull. They will appreciate the gesture.