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Sunday, April 12, 2015

My surprising thought, twice this weekend

Twice this weekend, I had a thought that I don't usually have.  I thought "I'm glad Janey is autistic".

I hesitate to even write what I wrote above, for a million reasons.  A few of them---I don't want to ever be a Pollyanna, someone saying that autism is a blessing.  And the inverse---I don't want to say that I usually don't want Janey to be who she is.  My usual state of thinking goes along the lines of wishing that Janey wasn't affected by the tough parts of autism.  Autism hasn't been terribly kind to Janey.  She is not one of those autism poster children, the kind that I think are pretty rare in real life, the kind with futures so bright you have to wear shades.  Autism has taken away much from her.  But that doesn't mean that she isn't an amazing person, someone I value very much just as she is.  But feeling glad she's autistic?  No, usually not.

So what happened this weekend?  Well, first, I realized that despite my burying my head in the sand, soon both boys would be out of the house.  We put the deposit down for Freddy to go to Skidmore College this fall.  He went to visit for three days there, a preview of life without him home.  Next year, come September, both boys will be in college.  It's harder than I ever pictured it would be to face that.  Of course, I am thrilled my boys are going to college, to colleges that will challenge them and allow them to explore their interests.  William loves Brandeis, and I think Freddy will love Skidmore.  But they won't be at home, and selfishly, that is very hard for me.  I loved being the mother of teenagers.  It will be very, very quiet without them.  And then I thought---this probably won't happen with Janey.  She isn't going to leave.  We get to keep her home.

It's a sign of how Janey's moods change that during her worst times, the thought of her being home forever leads me to despair.  But she's in a sunshine mood lately, and I have become by necessity very good at putting aside bad times when times are good.  When Janey is happy, none of the rest matters.  It doesn't matter that she isn't toilet trained, that she has a hard time talking, that she has very few academic skills.  It only matters that she is my daughter, my funny, unique girl.  Now, a few weeks from now, when the screaming and sadness most likely will have returned, I know I will feel differently.  I'll still love her desperately, but I won't feel as optimistic.  But I'm talking about how I feel right now.

Not our actual soup, but something like this!
The second time I had the "I'm glad Janey is autistic" was a littler thing.  Tony had made up a big soup of various vegetables.  We get a bin of organic fruits and vegetables every week, and he loves trying them.  He was sharing with Janey, and noted, as he often does, that she was only eating the green stuff---the kale and collard greens, not the rutabagas.  And I was thinking how much she loves the foods she loves, and cares not a bit or even knows that most kids don't like what she likes.  I was thinking about her dream mornings on the weekends, watching Tony cook and eagerly eating what he makes her.  And how most 10 year old girls would already be at the stage where a fun morning at home with Mama and Daddy, eating greens, would not be a thrill to the point of dancing around.  And again, I thought "I am glad Janey is autistic"

The truth is, of course, I'm not glad Janey is autistic.  This is because Janey's autism isn't her.  It's something she has.  You don't love a child for things they have or do, you love them for being them.  I don't love my boys for getting into college, for their senses of humor, or even for their kindness to their sister.  I love them because they are my sons.  And I love Janey because she is my daughter.  I love her just for being her.  But at times, I can love, separately, the traits that she has that are partly because of autism.  I can love the life situations that autism creates, like knowing she will probably never leave home.  I don't love autism.  But I love Janey, a girl with autism.

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