Sneakers with a skirt

This morning, I put Janey in a skirt.  As I put on her sneakers with the skirt, I had one of those crystal clear flashbacks.  I was in 7th grade, like Janey, and I had worn a dress to school.  With it, I wore sneakers, Keds kind of sneakers that were floral.  At recess, a bunch of girls snickered, and one said to me in the classic "I'll going to tell you the truth even if it hurts" type way, "You really aren't supposed to wear sneakers with a dress or skirt.  I think they look fine, but other people think it looks really dumb"  I hadn't thought of that for many years.  It wasn't any huge deal---it was the 7th grade type of girl stuff, which I am sure I dished out as well as took---but it stopped me short for a minute as I recalled it.

In many ways, Janey's world and the one I lived at her age don't have many interacting points.  She doesn't live a life which is in any way at all like most 13 year olds in 7th grade.  That makes me sad, often, but I don't think it makes her sad.  The last year or so, most of the time she's seemed pretty happy with her life.  We've fallen into a routine that works for her.  She knows the steps to get ready in the morning for school, she gets eagerly on the bus, she comes home and we go to get a snack at the store, she watches some TV, Daddy gets home, we eat supper, Janey and Daddy go for a car ride, they get home, we get ready for bed, she goes to sleep.  That's her days.  On the weekend, more TV, more car rides, more watching Daddy cook, more of the same.

Janey doesn't know you aren't supposed to wear sneakers with a dress.  I guess I didn't either, but she's not going to be schooled in it.  She doesn't care.  She's not going to have many of the small moments of hurt and sadness that the teenage years bring.  She's not going to hear the news and fear from it, not going to have the arching pain of a first crush, not going to have papers or reports or projects due on a deadline, not going to worry about test grades, not going to suffer the lingering sadness of broken friendships.  There is much she's not going to feel, and I have to say---that's not all bad.  When I say I wish she could feel those things, there is part of me that is glad she won't.  Life, typical life, everyday life, has a lot of pain.  

Is it okay that I sometimes rejoice in Janey exactly how she is, that I rejoice in the parts of her that are deeply connected with the autism?  Am I supposed to only feel happy when she is able to simulate normal?  Can I feel happy that she jumps up and down and screams with joy that we say yes to McDonalds?  Can I get teary-eyed at her beauty as she wears the clothes I picked for her, clothes that might not be the style for her age, clothes that are a mother's vision of how I want her to look?  Can I be glad she will always love Tony and me with an innocence that is non-critical, that never tackles the complicated tensions that arise as a child's relationship with parents changes as the child becomes an adult?  Can I look at her, waiting eagerly for the bus, in her skirt and sneakers, with her hair done inexpertly by me, and feel joy in exactly who she is?

I hope I can.  

Things I can't think about...but I do anyway

If I want to sleep at night, to ever let Janey out of my sight, to not spend my days in worry beyond worry, there are certain things I just can't think about.  And most of the time, I am able to do that.  But not always.  Sometimes, those things are in the news, or something happens that stirs up the thoughts, and wham...I am thinking.  Boy, am I thinking.

If only the brain had an off switch...

You all probably have read about the policeman in Florida who shot a caregiver of an autistic man, and explained he was actually aiming for the man with autism, and missed. (link here)  There's a lot to process there, but my mind went to the many times Janey's lost it in public.  I can picture her trying to hit or bite a caregiver, or Tony or me or her brothers, and what it might look like if a law enforcement officer came across the scene at the height of it.  I think she's a little protected just by being female, because right or wrong females seem to be seen as less of a threat, but still...my thoughts are not ones that are easy to think.

My friend Michelle and I have joked a lot that we have to live forever.  And the joke is partly a way to not face the reality that we won't, and that some day, our children will not be in our care.  Both our autistic daughters have two siblings.  For those siblings, the knowledge that they will likely someday play at least some role in Janey's or Lindsey's lives---I won't speak for them, but I am quite sure that knowledge plays a role, if even subconsciously, in their life planning.  But the alternative, a group home---well, that is something I try not to think about.  I am sure there are good, even great, group homes out there.  I know there are.  But there are others that are not as good.  This article (link here) about group homes in Massachusetts was not an easy read.

Janey's current psychiatrist told Tony and me in very clear, certain tones that Janey is at extremely high risk for abuse.  I feel like throwing up every time that thought comes into my mind.  He said girls who are non-verbal have a rate of abuse that is so high that it's almost a certainty.  Well, what do you do with knowledge like that?  I have to feel glad, here, that Janey lets people know when she doesn't like what is being done.  I want her to keep that voice.  The other day, for some reason the word "tap" came up in a conversation Janey was listening to.  Immediately, she said "tap" and tapped her head.  I know that is something taught in ABA.  I know the reasons for that kind of teaching, but I'll be honest---it was a bit troubling to see.  Do we really want our kids to respond instantly when told to do something?  

I am lucky.  I feel as close to total confidence as I can feel in Janey's schools. She is safe at home.  She is loved and cared for.  I wish I could simply close out the worries, the fears, the thoughts.  But I can't.  I don't think any of us who love a child with autism can.