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Tuesday, January 24, 2017

When asking politely doesn't work...

Janey woke up in the middle of the night a few nights ago.  It's been happening a little bit more lately, although still not at all as often as it used to.  This awakening, she was quite cheerful, but not at all tired.  Tony and I took turns staying up with her, as we usually do.  When my turn came, I tried to get her back to sleep by putting a whole bunch of blankets over her, which sometimes works.  This time, though, it just made her laugh and laugh.  And then she said "Pillow?"  I was a little surprised, as she isn't big on pillows, but I gathered up some and gave them to her.  She just kept repeating "pillow?" until finally, either she or I or both fell asleep.

The next morning, the first thing she said again was "Pillow?"  And because it was morning, I was awake enough to realize what she meant.  She was looking not for any generic pillow, but for Special Pillow.  

Special Pillow
Special Pillow is actually a pillowcase, put on any pillow.  It's the pillowcase she was given in the hospital when she had the burst appendix.  She became hugely attached to it there.  It didn't leave her side for weeks.  When we came home, she remained attached.  She never sleeps without it.  I wash it when I can, but if I want to make sure she sleeps, it better be around at bedtime.  It's the first and only object she's ever really been attached to.

It's a sign of how sleepy I was in the night that I didn't figure out what the problem was.  Special Pillowcase had fallen off the pillow it was on, and was lost among the blankets.  In the morning, when I finally wised up, I found it quickly, and Janey grabbed it for a big hug.

I've been thinking a lot about this whole incident the last few days.  The unusual part of it was how Janey didn't get a bit upset.  She just asked, repeatedly but without urgency, for the pillow.  It was her mild tone and lack of insistence, I think, that caused her not to break through my tired haze and figure out what she wanted.  

We often tell Janey just to ask for what she wants, not to scream or cry or throw a fit.  We tell her that she doesn't need to yell to get what she wants.  However, maybe she does.  When you don't have a lot of words to use, maybe tone of voice and volume and body language are necessary to get your point across.  Because she asked exactly how we ask her to, in a calm way, I didn't figure out what she meant.

I'm not sure what to make of this revelation. I think the big message for me needs to be to listen very well to her quiet and calm words (although I can't make any middle of the night promises).  Another thought, though, is that I want to try to be more understanding when she does scream.  Most children would have been able to say "I can't find my special pillow, and I can't sleep without it.  Will you help me find it?"  With Janey's mostly single word way of talking, I need to work hard to figure out what she means.  And I need to mentally translate screams into "This is urgent!  Pay attention to me right now!"

I'm not sure why Janey didn't scream about the pillow, but my guess is her desire for it was a lot like a lot of her OCD type arranging.  Often, before watching a video or eating or doing other enjoyable things, Janey arranges her surroundings.  She will turn off my computer monitor, move any laundry baskets to a different location, turn lights on or off, put the remotes on the table at straight angles, empty any half-full mugs of coffee into the sink (and then put the mugs back where they were, not in the sink!) and, depending on the day and her mood, a variety of other rituals.  She never gets upset doing these things.  She treats them like a job that has to be done---she does them in a businesslike and efficient way.  I think the pillow being with her feels like the monitor needing to be off---something to be checked off on a list.  Unlike with my OCD and I think most people's OCD, she doesn't seem to feel upset about needing to perform the rituals. So the pillow not being in place was more just something she needed to note and fix, not something terribly upsetting.

It's amazing to me sometimes how complex Janey can be.  I re-learn every day how much is going on in her mind, how much she can tell me if I learn how to listen.  I'll keep trying, Janey!  Thanks for being patient with me, sometimes!


pianorox said...

You are amazing. I love how you are continuing to understand Janey. She knows much more than she can express in a neurotypical way.

Unknown said...

Awesome Suzanne. Way to go. You're doing great and helping me to feel like there is someone else out there when I have felt quite alone for some time. Thank you for sharing.