A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start. They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.
This October has been tough so far here. This weekend and the past weekend have been pretty rough for Janey. She isn't happy. It's remarkable how long it's been since she's been unhappy like this. We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.
This weekend, Janey has been screaming a great deal. We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.
The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her. Is it physical pain? Did something upset her when she wasn't with us? Is she worried about something? Is she bored? Is she annoyed with us? Does she miss her brothers?
We are left, so often, playing a guessing game with her as to what is wrong. When she is screaming or crying, her already very limited speech becomes even more so. When we try to guess, often she falls back on her default response---"YES!" So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset. I feel awful for her when this happens. I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.
We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay. But it's not possible to drive when Janey is screaming. It's not safe, for her or for us. And she just cannot be cared for by one person alone when she is in screaming crisis mode. We tag team. She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts. I feel, quite honestly, trapped and overwhelmed.
I do believe this will pass. We've seen times like this before, and they don't last forever. But while they do last, I want more than anything to find a way to help Janey explain what is wrong. She is thirteen. I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life. But how do you deal with that kind of feeling when communication is tough? And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong. How do I know?
When the general public thinks of autism, I don't think they think of this. This isn't the quirky savant, or the toddler full of unlockable, fascinating potential. This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project. This is my Janey, and I wish so much I could help her be happier.