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Sunday, October 27, 2019

Mostly Sunny---a Janey report

Sometimes I miss writing more entries in this blog!  But other times I know I'm writing less because life with Janey is less intense than it used to be.  Still, I plan to continue this blog as long as I'm around to write it.  It's interesting and cool to think of the girls that are growing up along with Janey, ones I met through this blog when she was just three and who now are teenagers or young adults, and it's also great knowing some families with younger girls (and boys) are able to at times get a glimpse of what growing up as a family with an autistic member is like.

So, how are things with Janey?  Mostly sunny!  High school is off to a very good start overall.  We went to an open house a while back, and got time to talk a lot to Janey's teachers.  She has four teachers, with one being her homeroom teacher.  The rooms are all connected, and the kids move from class to class within the connected rooms.  Her teachers all seem incredibly good.  It's just amazing to us always what great teachers Janey has had.  It's wonderful hearing them tell stories about Janey.  You can tell they get her, and that they like her!  That means everything to me.  Lately her homeroom teacher has been sending us pictures of Janey at school along with reports.  I love seeing the pictures!  It's so cool to get to see Janey's days that way.  With the rise of smart phones and having a camera always around, I hope more teachers are sending pictures to parents, especially to parents of minimally or non-verbal kids.  A picture really is worth a thousand words.

A few weeks ago, Janey had a tough week.  She cried all day for about a week, and did the same at school.  Even coming in the middle of a long great run, it was very upsetting.  I think a lot of you can relate to how we flash back to the worst times so easily.  It's not Tony and my default thought "Oh, she's been happy for a long time and she's be happy again soon!  This is just a little glitch!"  Instead we think "Here we go.  It's going to get worse and worse and worse.  She'll probably end up back in Rhode Island (where the psychiatric hospital was that Janey spent time in when she was 10)"  I think it's a kind of PSTD.  It's very hard to take a step back and just think "Let's ride this out and see what happens".  But in this case, after the awful week, Janey suddenly became happy again.  She got off the bus one Friday afternoon and was happy, and has been happy since.  I need to try to remember that!

The other night, Janey wanted to watch a certain Angelina Ballerina.  Hulu and Netflix constantly take Angelinas off and on, and it's frustrating.  To buy an hour long episode often costs about $15---to have it permanently to watch.  Janey wanted Shining Star Trophy, which has been one of her favorites for a long time, but it wasn't available and I didn't want to spend the money.  We are being very careful with money now that Tony has retired early.  So I said no.  Janey threw a fit---screaming and crying and flinging herself around.  This was after the tough time had passed, and she was so sincere in her sadness and anger I thought to myself "What the heck?  What does she ever ask for, anyway?" and I bit the bullet and bought the show for her after having said no.

Janey at school
Later that same evening, a very interesting thing happened.  I told Janey it was bedtime.  She wasn't pleased.  Usually she'll just get up over and over if she doesn't want to sleep, but this time, she looked at me for a minute as if she was thinking something over, and then started to scream.  Somehow, I knew right away this was a different scream than I've ever heard before.  It was fake.  It had a whole different tone to it. 

To be honest, I was thrilled.  It was the first time EVER I have seen Janey consciously throw a fit when she wanted something.  Other times, she's certainly thrown a fit, but it's the much more common fit, one of not having the words to explain, one of pure unhappiness.  This wasn't that.  It was a deliberate thing.  I have no doubt about that.  I said, calmly but firmly, "Janey, it's time for bed.  Turn off the TV, put down the remote and get in bed"  And she gave me another long look, as if deciding what to do, and then did just what I asked, quite cheerfully.  You could almost see her thinking "Well, it was worth a try"

It's so cool to see that Janey is still developing, still learning, still maturing.  It takes her longer than most kids, but she does make progress in so many ways.

High school doesn't require uniforms.  When I see Janey dressed in school clothes, regular teenage girl clothes (although of course ones I pick out, but I do try to dress her in clothes her peers might wear), it sometimes takes my breath away.  It's funny---I can remember 15 so well, and having a daughter that age---it makes me think of how much she is her own person.  Like everyone else, she is different than her parents, not just because of her autism, but just because she is who she is.  I am so proud of her.  I look forward to watching her become an adult.

1 comment:

pianorox said...

Thank you for the update. I think of Janey often and miss hearing about her.