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.

New school show and my self-pity moment

Today was a year-end show at Janey's new school.  I've been to many, many shows at her old school, but this was the first one at her new school.  I was nervous, which is crazy, as not a lot is demanded of a parent at a school show but to sit there and clap.  Still, I was.  I wasn't sure exactly where in the building the show was (it's a BIG school), I kept worrying I had the date or time wrong and I kept thinking how I didn't know anyone there.  However, I knew those were fairly silly things to think about, and of course I made myself go, and I found the auditorium just fine, and got there at the right time and date, and sat down to watch.

The show was like most elementary school shows---lots of cute kids dancing and singing along to catchy songs.  Janey's old school was exceptional for shows---amazing, really, but I know that isn't the norm.  This show was sweet, and that wasn't why I spent half of it trying not to cry.

The reason for the crying?  I think it was when it really hit me.  Janey doesn't go to the Henderson School any more. She really doesn't.  And that made me sad.  And that was self-pity.  I was feeling self-pity because I liked going to the old school, seeing old friends, knowing most everyone, feeling like a part of it.  For someone like me, with what I'd have to admit is a dose of social anxiety at times, leaving a place I've come to feel at home at is not at all easy.

But for Janey?  The new school is great.  I was able to watch her teachers interact with her, and saw how much loving and caring attention she got.  I saw how adorably they dressed her up for the princess song she was in.  I talked to her teacher after the show, and she was wonderful.  Janey got upset near the end of the show, and her ABA therapist, another wonderful person, took her out. Janey looks happy at the school.  She is doing well.  She is still among the lower-functioning kids, even in a class with all autistic kids.  I could see that she needed much more supervision than the other children, and that on stage, she had someone right next to her, which was not the case with the other kids.  In many ways, it's like at her old school in terms of the level of support she needs, and I guess that shouldn't surprise me.  But now she is in an environment designed for kids with autism, and that is good.

On the way out, I saw Janey's old ABA therapist, Ken.  It was so great to see him, and to hear him say how very much he thinks we made the right decision about schools.  He knows both schools, and he said there is no doubt in his mind that Janey is in the right place.  That meant the world to me.  I know he would be honest to me if he didn't think so.  Seeing him also made me realize that I DO know a few people at the new school, and I will know more as times goes by.

I've been so lucky with Janey to have had so many people work with her that love her, that take good care of her, that understand her.  Seeing her today, even during my self-pity moments, sitting with her new teacher, smiling and happy and cared for, was a very good feeling.  I'll close with a picture of her in her adorable costume!