This is winter school vacation week here in New England. The last few vacations have been very tough with Janey, so Tony took all of this week off, which is great. Janey can't seem to deal with both not being in school and not having Daddy home. This week has been---not bad. Janey hasn't cried much, or screamed much. However, she has been very, very quiet. More than we've ever seen before, she has had long periods of just standing still and looking at us, or toward us. A few times, we were trying to locate her (something we do every minute or so if we aren't looking directly at he) and she has been right in the room with us, just extremely quiet and motionless. She has also just seemed on edge. At times, she has been singing thought a huge selection of songs, each in a scared sounding voice, something that you would think would be hard to do with jolly songs like "Jingle Bells", but she pulls it off.
Janey's mood might be partly because of a medical test I had to have on Tuesday. The results so far were very encouraging, but the test was an ordeal and I have large bandages on my wrists and neck. This seems to be bothering Janey a huge amount. Usually, she doesn't notice things like that, but over and over, she has come up to me, stared at me, and then gently tried to take off one of the bandages. We have to tell her no quickly, and she backs away wordlessly, looking spooked. I have tried hard to talk to her about this, and tell her I am fine, and even let her watch me change the bandages so she doesn't imagine something awful is under them, but it doesn't seem to have helped. We were all nervous before the test, and I was in a lot of pain after it, and she of course picks up on this, but doesn't understand it. It must to her seem very scary---Mama looks different! Mama cringes a little without meaning to when I get close (hoping she won't jump on me). Everyone seems edgy! It is so hard to see Janey having feelings like this, and not being able to know if she understands my explanations at all.
I'm thinking about how important familiarity is to Janey, and that ties into not wanting her to change schools. Her world must be a frightening place, so often. She has no idea why things change, when they do, or why people she expects to be there, to be constant and consistent, sometimes are not. Even little changes, like me having bandages or not being able to do all I usually do, scare her a good deal. And her reactions are not always what you would expect. I think Janey often goes into a freeze mode. When she just stands there, not doing anything, I think it's when she is so worried and nervous she can't even react. It's like a startled animal in the wild. She might look like she hasn't noticed the changes, but she has---she just has no idea how to react. And when she does decide how to react, it might not be obvious to us that her scared tone or crying or frantic actions have to do with the changes, the confusion. If the world is hard to understand, consistency seems like one the greatest gifts we can give Janey.
I will be very glad when school starts again, but this one time, not so much for me, selfishly, but for Janey. She needs that structure, that predictable mix of home and school. There is no vacation for her from autism.