I've always disliked the phrase that people often say to kids "Use your words!" I know the intent---to remind kids that when they are angry, they need to express verbally what's bothering them---but long before I had Janey, I felt that it was a kind of accusatory way to talk to kids. When they are upset, it might not be possible for even the most verbal kid to think of how to phrase what is upsetting them, and I think a kinder approach would just be to hug them or be sympathetic. But now, with Janey, I hate the phrase, because Janey CAN'T use her words. And it's not because she doesn't have any words. She has lots of words, but she can't use them, mostly. She can recite them, she can plug them into set phrases, but she can't use them, almost ever, to tell me what's wrong or why she is sad.
That's a big part of why things like summer school are so nervewracking for me. Janey started summertime school today (officially, it's Extended School Year, or ESY, but for Janey, I call it summertime school). I did better than other years. I didn't lie awake for hours last night worrying about today. I know enough people that will be there to know at least someone will have an eye on her, and I was thrilled today to find Mr. Ken, Janey's ABA specialist, waiting there for us. That made it like handing her off to a dear friend. I didn't know her teacher, but met her today, after no-one knowing who she was for a good long time. Everyone meets outside, and it's about how you'd picture a very lot of autistic kids being placed into the classes on the lists. A lot of the kids are not eager to say their names, or can't. But I was impressed at how relatively calm everything felt. I left without extreme nervousness. I know Ken will tell me how it went, honestly, and I know that the other 5 or 6 people I saw there today that know Janey (some of which I don't know, they just know Janey from other years) will be seeing how she's doing. But Janey can't tell me how she felt about school. If something scared her, big or little, she won't tell me. Maybe there are noises in the school she doesn't like, or they have a routine that bothers her, or another kid might hit her. None of those would be huge things, but without being able to hear about them and talk to Janey about them, they might very much be impacting how she is feeling about school, without me being able to help.
As we parked this morning to walk in, for one of the first times ever, Janey tried to fight me on walking to the school. She tried to go the other direction, to a playground she could see down the street, one she liked last year, with a water sprayer. Or I assume that is what she was resisting. It could also be that she just didn't remember what summer school was, and was upset we weren't at her regular school (summer school is in a totally different place). She tried again to pull away from me when we walked past a door that I think they use to go to swimming, which she also loved. It took all I had to keep her walking in the right direction, which was scary. She gets stronger all the time. I had to use my patter---my non-stop talking routine to keep her distracted and moving "Hey, let's head to school! I think we might see Mr. Ken there! We might see some of your friends there! I wonder what they will have for breakfast? I think you'll have a great time! Let's keep walking!" It worked, for now. There will come a day, I am sure, when I won't be able to get Janey to go where I want her to go, physically. That day scares me to think about.
And so, she's off. She's off for the day, and I'm home, and I will never know exactly what she did all day. I might get notes, I might hear parts of it, but with a child that can't use their words, so much of what they do out of your sight is a mystery. I just have to hope, to fervently hope, that she is happy and cared for and well.