Vacation week and a new Janey mood!

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.

Janey's Five Step Video Viewing Progression

Lately I've realized that Janey's viewing of movies and other videos follows a very strict sequence.  It's helping me understand some of her previously mysterious fits when watching videos.

Stage One---I put on something new for Janey, on Netflix or on VHS (we don't do DVDs for her much, as she very much likes to handle them, scratch them and lose them.  And VHSs are a dollar at our favorite thrift store, in terrific shape)  This might be a show or movie I'm pretty sure she'll love, something about a topic she likes or with characters she likes.  For an example, recently it was Toy Story.  She likes that type of computer animation, and the music seemed like something that would appeal to her.  However, no matter how perfect the match is, the first viewing is a disaster.  Janey will watch a bit, seemingly interested, and then get very upset and ask for something different.  I used to try to leave on the new video a bit longer, but now, I just take it out.

Stage Two---Two or three days go by.  I don't mention the video.  Then, out of the blue, Janey finds it.  She shows her ability to read in that one specific situation by always knowing her videos apart, even if there are no pictures.  I am not sure how she does it, but she does, even new ones.  It might be font, or letters, or who knows what, but she does.  She brings the video to me, or if it's Netflix, often finds it on her own and puts it on.  I don't mention her previous reaction, and neither does she.  She watches it eagerly and seems to love it.

Stage Three---the video goes into heavy rotation.  We watch, for example, Toy Story day and night.  Janey memorizes it, and says bits of dialogue at random times.  If there are songs, she learns them by heart.  The video is on her mind all the time.

Stage Four---Janey is still enjoying the video, but is starting to get upset while viewing it a bit more.  Sometimes, she starts crying during it, and we use our set phrase "If a video is making you sad, we turn it off".  She will accept that at first, but then obsessively ask for the video, watch it a bit, and then cry again.

Stage Five----The video completely freaks Janey out.  She is terrified of any even slightly scary parts.  This is true of videos you would not even picture having any scary parts, like Kipper or Sesame Street.  She still asks to watch it now and then, but then gets hysterical waiting for the scary parts to come on.  The video is added to the pile of unwatched shows.

I think it takes quite a few viewing for Janey to understand to some extent the plot of shows she watches.  Her initial enjoyment is just based on learning the dialogue and songs, and watching the images.  As she watches the show over and over, she starts to get it more, and characters like Ursula the Sea Witch in The Little Mermaid or Sid the Bad Kid Next Door in Toy Story come alive for her, and they are pretty scary.

I've learned a few things from figuring this all out.  One is that with much repetition, exact repetition of the kind that videos provide, Janey learns first to repeat the elements, and then actually learns what is going on.  It's her way of progressing with learning.  Other people might first watch for plot, and then get so familiar with the show they start to memorize it, but Janey does that backwards.  The other is that when Janey suddenly gets upset, in other contexts, it might be something she's heard or seen a lot of times before that has now clicked in as scary.  For example, she recently became nervous about sirens, after hearing them for years.  I think she finally connected them to the fast vehicles with flashing lights, and they are finally scary to her.

It's interesting that echolalia, or delayed echolalia, seem like vital step in Janey's understanding of the videos for content.  Maybe repeating the lines in her head allows her to work on understanding them.  I wish she'd not have to get scared after the understanding kicks in, or maybe I wish videos didn't all seem to have a bit scary parts.  But gradually, in small ways, I sometimes feel like I'm starting to get Janey.

Really?

I startled Janey last night. It was interesting---I don't think I've ever startled her before. She doesn't startle easily---she gets scared, but sudden unexpected things don't usually faze her. But she had fallen asleep maybe 15 minutes before I walked in the room and put on the computer. She jumped right up and started screaming and crying. She said "I scared you! I scared you!", reversing the pronouns as she usually does. I went over and held her and talked to her, and she started saying "I'm a scarecrow! A SCARECROW!" I realized she had watched an episode of Bob the Builder, and I think there's a scarecrow-like weird pumpkin head guy on that. Maybe she was having a nightmare, or she just thought scarecrow meant a scared person, or who knows what. I said "Scarecrows aren't to scare people. They are just to scare birds." Then she did the most unusual thing. She leaned in very close to me and said in a very low voice, in a tone I've only heard her ever use once or twice, what I would call a "normal" tone, a tone that sounded non-autistic, "Really?" It sent shivers down my spine. It's moments like that which can make people think somehow there is a "normal" kid inside every autistic kid---little moments of, I don't know what, clarity, or coincidental perfect timing, or something. I can't explain just how the tone was---it was just very, very different than usual, and had the body language along with it---the way she was asking was like "You can give it to me straight here. I want the truth" And then it was over, and I don't want to make that much of it. Mostly she's been pretty much as usual. Fairly happy most of the time. We've been home and I've been letting her do a lot of what she likes to do, and trying to do my own modified "floor time" about 4 or 5 times a day, just gathering a bag of toys she might like and interacted with her as much as she will allow, and trying to sneak in a lot of little bits of knowledge like counting or colors. Which I know you aren't supposed to do with floortime, but I said it was modified. I've been reading to her a lot too---pretty much just nursery rhymes, which I have a large collection of now. She likes to know what to expect to hear next---just the different pictures in the different books is enough surprise for her.