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Sunday, June 12, 2016

The Janey of today

On my Facebook feed today, a picture from three years ago came up, which I re-shared, a picture of Janey looking at herself in the reflection of the John Hancock building.  I love that picture.  I think it's my favorite of all the pictures I've taken of Janey.  It struck me a lot today, looking at it, how much Janey has changed in the time since it was taken.

The Janey of today is a very different girl than the Janey of three years ago.  She even looks a lot different.  When she was in the hospital a year ago, her hair got so hopelessly tangled we ended up cutting it short.  When it grew back, it came in very curly, like her brothers' hair, although up until that point it had been pretty straight.  It also was darker in color, more of a light brown than blonde.  She is also a lot taller and a lot more mature looking.  She looks much older than her 11 years, not younger than her years as she did as a little girl.

It goes a lot further than looks, though.  Especially over the last year, Janey is far calmer than she used to be.  Her outbursts and screaming spells still happen, but less than before, by far.  She hasn't had a day in a while, knock on wood, where she cried all day.  Those days used to be fairly common.

However, there are parts of the differences in Janey that are less positive.  A big one is speech.  She talks less than I think she ever has, except for when she was two, before her regression.  It's extremely rare to hear a complete sentence from her any more.  Most of her speech is single words now and then, or short well-used phrases "Cuddle on Mama's bed! Want cheese!  Socks on! Want shower!"  I read old blog posts and sometimes it's very hard reading what she used to say.  Her talking has always ebbed and flowed, but this low ebb has lasted a while.

In general, Janey is more introverted than she used to be.  The other day, I realized she had barely interacted with us all day.  She watched YouTube on her iPad, or videos on TV.  She takes car rides with us, and listens to music and looks out the window.  Hours can go by when she doesn't ask for anything or need anything.  At first, this was a bit of a break.  At times, it still is.  But something feels lost.  I feel sometimes like her personality is slipping away a bit.

Who is Janey today?  She's a beauty, if I might say so myself.  She's a lover of music, as much as ever.  Out of the blue she'll ask for a song she hasn't heard in ages, or will start singing it.  She's a great user of computers, at least in terms of opening YouTube, picking videos, switching between them and knowing which ones to put on to make the other she wants show up in the suggested list.  She's a great eater of good food, much more than I am.  She asks for "soup", which is kale with olive oil and hot sauce, all the time.  She's, most of the time, a pretty good sleeper.  She loves a good ride to anywhere or no-where.

Janey is also, though, a person with very, very little speech.  She is someone who has almost no traditional academic skills.  She can't read, write, do math, name her shapes or colors---although I know she knows much more than she can show, what she can show is very little.  She's someone who is unable to tell us things we need to know for her basic safety---if she hurts, if something upsets her when she isn't with us (or often even when she IS with us).  She will not be capable of living on her own, ever, unless a miracle happens.  She will not hold a job.  No matter how you look at it, no matter how much we accept her as she is, and we do, no matter how much we love her, and we love her beyond all words, she is extremely disabled.

What are my hopes for the Janey of today, and of tomorrow?  I hope we are able to care for her at home for a very long time.  I hope she is always treated with dignity and kindness.  I hope she is able to enjoy life, to do the things that bring her pleasure.  I hope when we are gone, the world is ready for her.  I hope by that time, there is a place for her, a place she can live her life to its fullest.  I hope she is always as happy as she was that day she saw herself reflected, a beautiful person inside and out.


Vijaya said...

Hi Suzanne ,

Very honest and touching post . your writing is honest and beautiful .I have a son with autism . I cannot leave his side EVER until i am gone.

They say Time heals almost everything,give it time . I somehow feel our children will be happy with all the help they get, they will live a happy life . Hugs .

pianorox said...

She is beautiful and so are you!

juliana said...

Oh my, I just discovered your blog and read like 5 pages worth of posts in one go. My son is also on the spectrum and it feels a little less lonely to read blogs like yours. I'm relieved you are so honest.