Friday, October 18, 2013

It Don't Take Much

Zoe's summer school program ended a little while ago. It was a half-day, with her normal preschool teacher and most of the same kids from her class. It was her last chance at familiarity before kindergarten in the fall, and even with just a week between normal school ending and summer starting, we knew she was anxious to go back. For the second summer in a row, the program was at a nearby elementary -- not her normal preschool, but the only school in the district with air conditioning. Because it was within the same district, the same bus company provided her transportation.

This past winter had been a momentous one in terms of Zoe's transportation needs. She graduated to a wheelchair, mostly when my wife got too pregnant to carry her onto the bus every day. When that happened, the bus company started sending a bus with a side door and motorized lift. It introduced a whole new system of harnesses and wheel-locks to learn, but even for those of us without babies in our belly, it made life a lot easier. Zoe also was proud to not be carried on and off the bus in front of her friends by one of her parents (I mean, seriously, Dad).

Once summer school started, we had a new driver, a young woman who couldn't hide that she was a little new to this. We were a little late coming out the first morning, but it didn't matter. She was standing in our driveway, trying to figure out the lift system while maintaining her good nature. If it were me, I'd have been swearing at the lift system and everything to which it was attached. Point of fact: I was still swearing, but with not quite as much frustration as I would have if I were the driver. She called Dispatch, and they figured out the issue. Once Zoe was onboard, the young woman had no idea how to get her chair secured. Luckily, I knew what to do. Just as I was about to get off the bus, something occurred to me. "You're all alone," I said to the driver. "You don't have an aide." She confirmed that there wasn't anyone hiding in the back or any other mysteries at hand. I explained that Zoe's condition carried with it the risk of seizures, and everyone would be better off if she had someone to help monitor (with lift and harness experience being strongly preferred, if not required). A little brusquely, she told me I should call the office to see what they would do about it. I didn't mind her patience level with me, knowing she was late to get the next kid. I asked her name, so we knew it for tomorrow and to thank her. She said her name was Felicia, a little warily, as if I would use it in reprimand when I called the office. I went back inside, worked for a few hours, then called the bus company right before lunch. They told me their computers were down, so they couldn't look up Zoe's route number, but they took our name and said they'd call later to let us know what arrangements we could work out.

An hour later, Zoe's bus pulled up to the house, with an aide onboard. Felicia* hadn't waited for me to call the office. This was very astute of her, given that we'd just met (it takes some people years to fully appreciate my powers of procrastination). She'd taken it on herself to mention it when she finished her route that morning. The next day I was in my actual office, rather than at home, and the bus was a little late. Felicia was very apologetic and assured my wife she was still getting used to the intricacies of the new route. This started a week-long stretch of Felicia reminding us that Zoe was the first girl she'd picked up on her first day, her favorite, and she'd always be her first priority. For the rest of the week, she assured me and my wife that she'd be on time, and she kept her word. Each day, she and the aide asked more questions about Zoe and Rett Syndrome's effects on her. Towards the end of the week, I was wheeling Zoe out. She'd tensed up a bit in our foyer as we'd waited for Felicia, and she had a tight smirk over clenched teeth, while she waited for her muscles to slacken. Felicia noticed Zoe's expression and asked "Is that how she smiles?" I was a little surprised at the question, since I was sure they'd warmed up to each other by now. "Oh, no," I said. "You'll know when she smiles. She has the best smiles. You can't mistake them." By the following week, Felicia and the aide were talking about Zoe's smiles and how much they loved seeing them every day.

This is not her real name. I know how bureaucratic things work, and it may not help her if anyone in the office knew what she did. She also may not want people to know; she may have just been doing her damn job, which makes us admire her more.

It was that week the weather started getting hotter. That Friday, ever-vigilant, I remarked to Felicia that the bus didn't have air conditioning, as I broke a sweat just getting Zoe strapped into place. It did not, Felicia confirmed. I explained how the heat increased Zoe's risk of seizures, and how sensitive she was to heat in general. Once again, Felicia told me to call the bus company but added that she'd mention it when she got back to the office. That afternoon, a different bus pulled up, and I was greeted by a face full of cold air when the side door opened up. I was also greeted by a different driver and a different aide. The driver was a middle-aged guy, a little scruffy and a little sarcastic. He seemed like he could be funny in certain social situations that might not have involved driving a bus full of children, but he wasn't outwardly friendly, and I was sure Zoe would notice the difference in demeanor. The aide was also a middle-aged man, a little hard to talk to but seemingly harmless. They were not, however, Zoe's newest friends. Furthermore, none of the kids from her class rode this new bus, as had been the case with Felicia. We didn't realize we had to exchange the un-air-conditioned bus for Felicia herself.

We brought Zoe inside, but it was clear she was upset. Her muscles were tense, she was shaking, and she had an intense scowl on her face. Steph started asking her questions, like we normally do when our girl gets home, but we asked some questions we don't normally ask. Was she mad? Yes, she was. Was she mad because she had a different driver? Yes, she was. Was she mad that no one told her? Yes, she was. We let her lay down in bed to calm down, and we lamented the fact that no one thought it was important to tell Zoe about the new arrangements, that something in her life was going to change -- something they would have told any other four- or five-year-old. We hadn't known the change was taking place, but we'd been just as guilty of this with her in the past. During her first year of preschool, we noticed she got very withdrawn over the course of Christmas break. About two weeks into it, it hit us: we didn't tell her she was going to be out of school, even just temporarily. She assumed after a whole week of being home that she wasn't going back, and it made her sad. That was enough of a lesson for me, but we still forget to tell her little shit like that all the time. Luckily, she knows this now and is more patient with us. But it was clear she didn't think losing her friend Felicia qualified as 'little shit'.

My wife sent Felicia a test message that Monday morning after Zoe got picked up, saying how sorry we were to lose her. She wrote back immediately, saying how much they'd missed Zoe that morning, and how sad she'd been that her office had solved the air-conditioning problem the way they had. Once again, she said to call the company to complain, but once again, she took matters into her own hands for her friend Zoe. That afternoon, the new bus pulled up and Felicia got out, walked across our driveway, and over to the lift to reveal our daughter, waiting to be lowered down home, trying hard not to smile too big.

It is strange to admit this, but we, as special needs parents, don't trust other adults, even other parents, to not overlook our children. The instincts, I suppose, are the same for parents of a typical kid (I can vouch for this, as I have a part-time job as the parent of two typical children). You don't want your child excluded, viewed differently, or to be deprived of something simple. It's a normal instinct, but with a child like Zoe, the volume is turned all the way up. Every quizzical look in public is weighted down and we carry it with us the rest of the day. Every quick look away from us is even worse. We wonder, do you pity us? Do you just pity her? Are you judging us for something? Just say what it is. And then when these wheels turn needlessly in our head for an afternoon, and then when we're proven wrong by your kindness, we dissolve emotionally. We cannot discuss it rationally. And we forget that there's work involved from our part to make the connection, to make other people take interest. Felicia had done a lot for Zoe, but she might not have extended herself yet again if my wife hadn't recognized the one thing that would make Zoe the happiest and done something about it. Sure, it was something simple, but it was the right action at the right time. Anyone can be a little girl's new friend, or her favorite friend, but her hero should always be her mommy. And whether it took all the work in the world, or no work at all, all is as it should be here at our house.