We have a daughter with Down Syndrome and Autism. Every school day begins with a ride on the big yellow bus. She’s been getting onto buses since age 3, although we had to carry her to her seat back then. We wake her up, get her dressed and prepped, and wait for the bus. When it arrives, she knows the drill and heads for the door. I will usually escort her out, which is sometimes as smooth as butter and other times as complex as bathing a cat, but eventually she finds herself ascending the grand BlueBird staircase into the moniker of education-based mass transit. Bus nurse/monitor/facilitator extraordinaire Eileen will lead Lexi to her LexiSeat™ and buckle up for the ride to school. This happens almost every day throughout the year.
Today, though… it almost didn’t happen.
From morning song one, Lexi was as happy as a clam, and a happy clam at that (they’re usually wearing a mask of happiness to hide the frustration of the lost pearl.) Everything in her routine was moving along as expected. In fact, I’d give it a solid 9 on a morning prep scale of 1-10. The bus pulled into position near the end of our driveway and we headed out. Only a few feet from those classic school bus double doors, Lexi decided, like never before, to not get on. She doesn’t use salty language — Lexi’s syntax is certainly her own — but I’m sure that whatever she was saying has English equivalents that would easily get my blog banned. Lexi was unhappy at best and downright angry at worst. This was the fiercest I’ve ever seen her… and I’ve clipped her fingernails before.
The bus driver, an excellent and thoughtful woman who understands Lexi and does everything she can to make the ride a smooth one, was as surprised as I was. The puddles formed by the morning rain became Lexi’s secondary bath as she slammed herself down in protest. Her screams of terror bounced off the houses of the neighborhood. Lexi eventually verbalized an English word that she only busts out in extreme moments of frustration and/or fear: no. She said no. No bus.
Yikes. What in blazes? The lady doth protest too much, methinks.
Eventually she gave in and climbed on, but if it were up to her, the day would’ve gone much differently. Why, Lexi? She cannot answer this question in a way that I am yet capable of understanding.
And that’s when I remember what it’s like to play the board game Clue. Trying to gauge Lexi is sort of like solving a three-dimensional situational puzzle that relies on what is seen, what is assumed, what is eliminated, and pure chance. In times like these, I (and several other awesome family members and caregivers alike) try to get into her head (figuratively) to see all of this from her unique perspective. And then we start adding up details. As for the no bus fiasco that her day began with, here’s what I got for this morning — and, by the way, I’ve been thinking about this off and on for most of the day yet I’m still stumped:
- It was raining, and maybe she didn’t want to walk through the big puddle at the end of our driveway. The bus driver foresaw this as a possible distraction and pulled up in a way that avoided the puddle sojourn, but maybe Lexi didn’t see it that way. Was it the water/sensory thing?
- It was Monday, and she hadn’t been in school for almost a week, with kudos to Thanksgiving. Perhaps the idea of a bunch of professional educators telling her what to do and making her, you know, learn and stuff, didn’t quite compare to the long-weekend home life she’d grown accustomed to, which was fueled by monotonous YouTube videos and foods of a wide variety (mostly leftover Turkey.) Was it the schedule/routine thing?
- She’s Lexi, and, although we can usually foresee from her patterns, her sounds, and even the look on her face that she’s in a certain mood, we are still but mediocre forecasters, not unlike the weatherman who predicts a foot of snow by mid-morning Tuesday with only a dusting by dinnertime. Was it the I‘m predictable but I’m still a person and I have a personality thing?
And speaking of personality, she’s totally fine now. Like it never happened. Lexi has no pretense, no shame (at least that we can see) and moves on quicker than anyone else I know. What led to the shenanigans of this morning? I have no idea. Behold the mystery of our daughter. But I face tomorrow undaunted, ready to communicate in the spoken and unspoken, ready to try and think like her and see the hurdles which are so obvious to no one but Lexi, which is due in part to our limitations as mere mortals.