Janey started 7th grade today. When I sat down to count, it surprised me a bit that it was first day of school number 11 for her. She started 3 year old kindergarten just after she turned 3, and she went to 5 year old kindergarten twice...it all adds up to 11 first days of school.
I'll have to say, of all those first days, today might be the one I felt the most anxious about. That seems counter-intuitive, but it's true. Mostly, this is because of how summer school went. Janey seemed truly unhappy for the first extended time at school. She resisted the bus, she came home seeming upset every day, and eventually, when her teacher told me she was having a very hard time getting through the days, I took her out for the last week or so. I think I should have done so sooner. After about a week to decompress, we saw the happy Janey again. We went on our long trip to take William to Chicago and to see my dear friend Michelle and her family in Ohio, and Janey was amazing. The only really rough times were when we cruelly tried to get her to use the bathroom at rest stops before eating. Once we stopped doing that, she was happy almost the whole time. She slept well in the hotels, traveled, made herself at home at Michelle's house, listened to a ton of music, all that. We reflected that we didn't think a trip with a more typical 13 year old would have been as tear-free!
I spent a lot of time the last few days thinking about the contrast between the time Janey was in summer school and the trip. It can sometimes feel, in the midst of Janey being unhappy, that that is just her default state, that what we do makes no difference. But that's not true. Of course, we can't go on trips every day, but the things the trip featured---novelty within a familiar framework, tons of music, exercise she enjoyed (playing in hotel pools), much one on one attention---those are proven ingredients for a happy Janey. And as Janey gets older, it seems like school gives her less and less of what makes her happy.
Of course, the standard response to that would be "school is meant for learning, not entertainment". And my response back---well, it's been 11 years now. And Janey hasn't shown she wants or is able to learn what the schools have to teach. It's not for lack of good teachers or lack of trying. Most kids in her program DO learn. They learn to read and write and do math. They do amazingly well. I think Janey has spoken. She's not interested in that kind of learning. And as she gets older and diverges more from even the standard autism path, it might be getting harder for her to find the level of comfort at school she needs to be relaxed enough to learn at all.
So---what can I do? I don't think the school I imagine for Janey exists. I'm not even sure myself what I picture the school being. Or if what I picture even is a school. But I can picture what she'd love---a place where she could be outside as much as possible, where she could have access to music at all times, where she would go on excursions to parks, take rides on buses and trains, play in water, rest when she was tired, be read to and look at books, work on basic cooking, be taken to stores and helped to purchase items, be encouraged gently to talk more...that's my dream.
And you might have had the thought I've had. That sounds like home schooling. And that has crossed my mind. But, to a person, everyone who has spent time with Janey has emphatically said to me what I know to be the truth---I couldn't do it. Not just I don't want to do it---I couldn't, physically or mentally. Healthwise, I could not make it without the respite that school provides. Mentally and physically, doing it all alone, I would very quickly be too tired to provide the atmosphere Janey would thrive in. I know that. During the weeks this summer we were at home and she was not at school, I was drained beyond what I can explain. We wound up staying home with Janey watching videos, with a daily walk to get ice cream. That's all I could do. That is not what Janey needs.
What happens when No Child Left Behind leaves your child behind? I know that the schools are required to try to teach Janey, and I know for so many kids, that is a good thing, that there are kids that in the past would not have been offered the chance to learn to read or write that are thriving with that chance. But in our quest to give each child a chance, can the vision of success be expanded? Can we give Janey and the other Janeys out there the chance to be the best they can be, even if that best requires a very different kind of school environment? That is what I am going to be trying to figure out.