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Friday, July 15, 2016

Summer school and some thoughts

Janey started summer school this week.  I was nervous about summer school when I found out she would be going to a different school than she does during the regular school year.  This is because she's technically in 6th grade now, and her regular school only has an elementary school summer program (although it goes to 8th grade during the regular year).  She is attending a middle school a ways from our house.  There was an open house last Friday, and we took Janey.  After going to the open house, I no longer felt nervous at all.  We found out Janey's teacher was going to be the husband of one of the most wonderful people we've ever had work with Janey---an ABA supervisor whose known Janey for many years and is the person who actually visited her in Rhode Island when she was at the hospital there.  Any husband of hers was okay with us, and he seemed great---like someone who would understand Janey and like working with her.  We also met the ABA therapist assigned to her for the summer, and she knew Janey from way back at her original school, and seemed great.  The administrator of the program met us as we came in, and was enthusiastic and very good with Janey. It was a huge relief to meet them all.

For the first time ever, I think Janey was truly looking forward to summer school.  I don't mean just it was the first time she looked forward to summer school, but the first time she's understood enough to look forward to anything.  She woke up excited on Monday, and when I asked her "are you happy you're going to summer school today?" she smiled hugely and said "YES!" in an emphatic voice.  She wanted to go out and wait for the bus about two hours before it was due to arrive, but I held her off until about 20 minutes early.  When the bus came (on time!) she jumped on with complete confidence.  I love it that all three of my kids don't seem to suffer from the social anxiety I have.  None of them has ever had much trouble separating from me.  I thought about how I would have been at age eleven in Janey's position, going to a new school.  I would have been a wreck.  I don't think it's Janey's autism that makes her different than me in that way, at least totally.  It's her personality, and I love that about her.

In thinking about this past week, I kept thinking about WHY things seem easier now.  It's partly because they ARE, but if I take any day this week, I could find examples of very tough behavior from Janey.  There's been screaming, the loud piercing scream.  There's been arm biting, lots of it.  There's been "toileting incidents".  There's been hitting of Freddy, who seems like her go-to person when she is angry.  There's been obsessive changing of TV shows, and meltdowns when I didn't understand what she wanted.  There's been, in fact, most of the behaviors she's had all along.  But if I thought of the week in a quick summary in my mind, I'd say it's been a very good week.

I think two things make life seem easier now.  One is duration.  The behaviors happen, but they don't last all day, or usually very long at all.  They happen, intensely, and then Janey recovers.  The other thing is perspective, our perspective.  Not that I want to think we ever DIDN'T accept Janey, but now, it's a different kind of acceptance.  Janey is who she is.  It's hard to explain, but I'm starting to see that parents of autistic kids are often made to feel that their kids are somehow fixer-uppers.  They have potential.  They need to be remodeled extensively, and then, they will be livable and valuable.  More and more, that kind of thinking is bothering me a great deal.  NOBODY is a fixer-upper.  That doesn't mean we are all perfect, if you see perfect as some ideal that doesn't exist.  It doesn't mean we don't need to work on helping our children, ALL our children, learn to live in society.  But in accepting that Janey is not some project, not some house that needs to be gutted and remade, we can also accept that there's going to be screaming, there's going to be arm biting, there's going to be times that are tough.  They don't last forever, and there are also times that are great.  I'm not pretending that the challenges of autism are easy.  They aren't.  I'm not saying that Janey is not, overall, more of a challenge to parent than most kids.  She is.  She is very, very challenging, often.  But all that doesn't make her less of a complete person.

Now I will go and try to explain to Janey why Netflix no longer carries "Hercules", and try to calm her meltdown over that.  I am tired of the daily battle over that issue, but it will pass, and it's part of what makes Janey Janey, the Janey that fascinates, frustrates, confuses, intrigues and captivates me, like her brothers, like all kids.

1 comment:

Cath Young said...

Most all of us are fixer uppers. I love the Fixer Upper song in "frozen". What's important is that we are fixer uppers too, even as we are working to fix up someone else. I guess the important thing to remember is that we aren't looking to make a show case model, but something that we can live with, which is what are actual housing fixer upper projects have ended up being.


I'm glad Janie and family have come to an understanding of sorts.