It is always an expectant trip. We leave around 10:00 a.m. for the 58-mile drive to have lunch with my daughter, Madison.
Although I finally learned to drive from my wheelchair a little over a year ago, Pat, our family caregiver for seventeen years, is my “chauffeur” for our weekly visits. (In 1997 when Madison was four years old, I was paralyzed by Transverse Myeltis, an extremely rare inflammation of the spinal cord that began as the flu.)
Each Tuesday is the same—yet different. We leave at the same time, eat at the same place, and even order the same food. Yet, we never know which Madison will greet us. Will it be the “Happy Madison,” with the bright smile and dancing eyes who works hard to stifle her giggles? “Hey, Mommy!” this Madison will boom with her robust Barney-the-Dinosaur voice. Although nineteen, Madison has deep purple dinosaur roots and still accents her limited speech with octave-ranging pitches from Barney's baritone to Baby Bop's soprano. At other times, however, those same voices can set off an angry tirade or behavioral episode.
The “Happy Madison” will skip out to the parking lot to see me, kiss me on the cheek, and give me her famous light touch hug as she draws her head to mine and stares eyeball to eyeball as if she’s making sure that I’m “in there.” Once buckled in the van, this Madison may break into song—a Mary-Kate and Ashley Olsen favorite like, “Brother For Sale.” She seems to enjoy not so much the lyrics, but rather the video’s frame-by-frame images she so readily runs and repeats in her mind. And if this “Happy Madison” is particularly joyful, she may rock the van with her exuberant singing, swaying side to side like the folks in that classic cola commercial about teaching the world to sing. Each week, I hope this is the Madison I will see.
Sometimes, however, her autism rules and robs her of the words that the rest of us rely on to convey our thoughts and feelings. Her self-expression is reduced to behaviors that require interpretation and sometimes intervention, testing our best efforts to respond and comfort. So with our emotional shock absorbers in place, we look forward to seeing my Madison, and sharing a meal that promises to be a special memory—no matter which Madison greets us. Like most whose lives and journeys have been touched by autism, we hope for the best, but prepare for the worst. And always travel expectantly.