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Thursday, May 2, 2013

A Good Stretch

Janey is continuing her good stretch.  There were the two very tough weeks, vacation week and the week after, but by the end of the week after, things were starting to improve, and this week has been a great one---Janey happy, few meltdowns, good potty use, better sleep, and of course the tea party I wrote about.  She's done a few other very sweet things, especially a few nights ago when she was "reading" a book about a bunny aloud---using a voice that was obviously like a teacher voice reading to a class.  She said a set phrase (something like "Look!  The bunny has big ears!") for each page, but she said it in the sweetest way.  That was great.

What makes a stretch good like this?  And what makes a stretch bad?  If I knew that, I'd do whatever I could to use the knowledge to make all the stretches good.  There's a few things I can guess at.  One is routine---vacations are bad, bad news, usually.  Janey can handle weekends, and has a sense I think of what two days are, and knows when it should be Monday, as she doesn't like long weekends, but she can't handle vacations.  I'm so glad she has summer school---before that, the summers were very tough.  Another factor, I'm coming to see, is weather.  Good weather and time outside are vital for Janey.  She needs that---the time to feel the fresh air, to have room to move.  And a third is how the rest of us are doing.  Janey picks up hugely on our emotions.  Vacation week was extra bad this time around because we all were upset over the bombing and all the aftereffects.  If we are tense, although Janey doesn't understand what we are tense about, she picks up on our mood.  She is extremely sensitive to tones of voice especially.  She can understand them, if not the words.

Another things we've been doing is leaving an iPod on the base that has speakers at all times, so Janey can go over there and play songs from her playlist when she feels like it.  This often calms her right down---she goes through the songs until she finds the one she needs to hear, and listens to it intently.  Anything like that that we can do to give her some control over what she sees and hears seems to be very important.  Now, no matter what she asks for on TV, I usually set it to Netflix streaming and hand her the remote, so she can pick what she wants.  I think one of the big steps forward in the past 6 months or so is her learning to use technology like that a bit better.  When it's hard for you to talk, being able to pick what you want in such a way must feel wonderful.

Even if we go with all the things that usually make Janey happy, I know there will be more tough, crying times.  Life as Janey is probably a very frustrating thing to live, often.  She is growing up and I think, I guess, becoming more aware of what she can't do, maybe not consciously, but at some level.  I can picture her wanting things she has no way on earth of explaining, and that would make me cry too.  It's why I need to try so hard to figure her out, and why I need to do all I can to give her ways to control her life.


mknecht24 said...

I love that Janey can navigate through Netflix and the iPod on her own. That says a lot about her functional ability. Lindsey has no interest in either. She is barely using the iPad to make snack choices at school, and that is a HUGE step for her. We will never give up hope though. :)

House Of D. said...

I think its something we are all thinking about, my daughter is so young i havent even begun the journey you are well on your way on now, even i think about those things, im sorry as i am kinda new to all this, why is vacation time so hard for Janey? is she particularly attached to her school? im sorry if im asking something wrong or something that i should already know, i just really dont know and would like to.