I was tired today. I'm tired pretty much every day, to be honest. But today wasn't after a particularly bad night or crying spell or rough patch with Janey, and I was feeling like I should have more energy. Then I thought about how every day, every routine, every part of my life is affected by Janey and her autism. Not always in a bad way, but almost always in a tiring way. I picked one part of a typical day and thought it through---the ride to school.
We head out of the door. At the top of the steps down to the driveway, Janey stops. She stands there, looking into space, looking like she has no idea what comes next. I try hard not to take her hand and lead her down. She is very capable of walking down the steps by herself. I go to the bottom and call to her "Come on, honey. It's car time. Come down and get in the car." If she's exactly in the mood, she might, but usually she gives no sign of having heard me. Sometimes I say it again and again, finally using my firm voice---"come down the steps RIGHT NOW" That usually does it. Other days, when we are rushed, I go up, hold her hand and guide her down. We go to the car. I open the back seat. She stands by the door, again, looking confused, as if this is something we've never, ever done before. I say "Get in the car, please" She ignores me, 9 times out of 10. Like the steps, some days I wait it out, saying it over and over, other days, if we are running late, I take her hand and guide her in. I tell myself every day I will leave early enough so there is time to always just wait her out, but you probably know how that goes. When she gets in, I buckle her in and we are off.
While we are driving, there are a few things I need to watch for. Janey likes to put things in her mouth. Food if possible, non-food things if that's what's around. I try to keep the car free of floor trail mix, but I am not the tidiest person in the world (those of you who have met me in person, please stop laughing!), and Janey sometimes finds an old chip or cracker. I yell out "don't eat food you find on the seat (or floor)!" But she knows I'm driving, and she does what she wants to do. I figure we all have to eat a peck of dirt in our life, they say, but it's worse when she bites on a stuffed animal, or book or the seat belt, or whatever. It's hard to drive when you are keeping an eye on the back seat always also. I put on music, most days. Janey likes most of my music, but when she doesn't, she screams, and I change the song quickly. I've tried in vain to teach her to say "I don't like that song!" but she prefers the scream. If she does like a song, she will quickly say when it ends "Do you like that song???" with extreme intensity. That means I need to play it again, or risk a catastrophic falling apart.
The drive to school takes around 25-30 minutes, through Boston traffic. I hate to drive, but this route has become so familiar to me I don't hate it quite as much as most. It's still a constant stress, though, and spending 2 hours of my day behind the wheel total is probably a big part of the tiredness. But it's worth it, to have Janey at a school I love. She could take the bus, and I think about it, but I don't think I'm ready. Unlike my bus growing up or the bus in smaller towns, I don't know the drivers, and many of them don't speak English well. Janey is prone to screaming, prone to unbuckling her seatbelt, prone to not being an easy passenger. The buses are often mostly empty, due to Boston's odd school zones and busing history. And it makes me nervous to think of a mostly non-verbal girl, possibly by herself on a bus with a driver I don't know. I might need to get past that some day, but I'm not ready to yet.
We arrive at the school, and find a place to park---often quite a challenge. There is no parking lot, just assorted on street parking. I open Janey's door and say "Unbuckle your seat beat and hop on out". Again, the blank look, as if I am asking her something bizarre and unheard-off. I started having her unbuckle herself when we got to school after a series of times she unbuckled herself while we were driving, always at the middle of some dangerous and not stopping-friendly intersection. My aim was to teach her the right places to unbuckle, but I don't think it's worked. She finally, after the same routines of re-asking and guiding, unbuckles and gets out. I put on her backpack, and we walk in.
Lots of people say hi to Janey. She never answers, in the morning anyway. Sometimes in the afternoon. She goes into the school with her blank, stoic look. Once in a while, if not a lot of people are around and we have time, I try at safe places not holding her hand, to see if she has any idea where the school is and where her room is. She usually just stops in place if I let go. It's like I am her motor.
When we get to her room, I give her a kiss. Her teachers remind her to say goodbye, and after enough reminders, she does, in a fashion. I don't linger, but I stay long enough to see her standing there, waiting for the next reminder. She's had the same routine in the mornings for 6 years now, but every day, it seems new to her, as if she's thinking "Take off my backpack? Wow, that never once would have occurred to me!" I get in the car and head home. Sometimes, I take a nap right away. And I try to not judge myself for that.