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Tuesday, April 21, 2015

Oh, Janey, how can I help you?

Janey, very unhappy
It's vacation week, and Janey is not happy.  As always, it's hard to say exactly why.  She doesn't care for the change of routine that vacation brings, ever, and this one, with neither brother around, seems to be hitting her extra hard.  Tony is working half days, to help me keep my sanity, but even that is tough.  She isn't sleeping well---she was up last night at 3 am.  Much of the day today featured hysterical crying, and when she wasn't crying, she was furious---lashing out at me, asking over and over to do things we couldn't do, just miserable.  And I am asking myself what I so often ask myself---Janey, how can I help you be happier?

An odd moment a few days ago got me thinking about what Janey wants and needs.  I showed her a video of Carly Fleischmann, a girl with autism who communicates by typing.  The video showed her at a coffee shop and illustrated the kind of frustration that builds up when you can't communicate verbally and there are all kinds of sounds and distractions.  Janey watched the video avidly.  Afterward, I told her that the girl in the video had autism, like she does, and that she couldn't talk with out loud words, and talked with typing.  I said maybe we could find some way to help Janey talk more easily, too.  Janey looked at me, with a look she only gets once in a long time, a look of clarity and directness, and said "I know how to talk".  I said "I know you do, but sometimes talking is hard for you.  That's why I'd like to find other ways to help you tell us things"  Janey again stared at me, and said, in a voice that was beyond firm, "I KNOW HOW TO TALK".

Janey has always resisted assisted communication type things---iPad programs, PECS type programs, typing, sign language---anything besides verbal talking.  I have always wondered how hard I should push her to use other ways to communicate, since her talking is often so limited.  But I feel like she has spoken, literally.  It was one of those weird moments---one that thinking back is almost hard to believe happened.  But it did.

And so, Janey, how CAN I help?  How can I better understand why you are so unhappy so much of the time?  Why did you cry and cry and cry today?  Why do you ask, a thousand times a day, to "go see Maryellen" or "Go see Auntie Carrie" when I've tried so hard to explain we can't at that moment?  Why do you want your bathing suit on all the time to go swimming, when we have no-place to swim?  Why do you ask me to snuggle you, and then lash out and hit me and scream when I do?  Why do you want to watch Little Bear, but cry every time we put it on?  Why do you resist toilet training so much?  Why do you bite your arm?  Why is it so hard, so very very very very hard, to keep you happy?

A little calmer, for a few minutes, walking with Daddy.
I would do anything to make Janey's life a happier one.  But I don't know what to do.  I have no idea what to do, most of the time.  And the days go by, and the weeks, and the years, and it's not getting any easier for any of us.


pianorox said...

I can understand your frustration especially when moments of clarity seem to indicate an understanding far beyond what is outwardly demonstrated. Keep trying, the key is there somewhere.

Angela Conrad said...

I completely understand your frustrations! I go through this with Trenton every day. I often ask myself, "Will it get better?" But I know that answer to that question....oh how I wish it would get better for you and I! Wish we lived closer and we would go get that cup of coffee:)