First published on July 3, 2012.
“Annie,” I called, cupping my hand to the phone. “We are making no progress. I am so sorry.”
It was my second call to the school. We were late, very late, and I worried how it would affect Madison and our visit. The interstate had been shut down, rerouting us to a two-lane road that doubled our hour-long drive.
“I think you should go ahead and give Madison some lunch,” I told her. “Maybe we will just have ice cream this trip.” Hunger is never a friend when Madison is “brittle,” or prone to upset. And we didn’t need any more complicating issues given our delay.
Like many children with autism, Madison does not wait well. We tell her that I am coming for lunch just before I arrive. We’ve learned that if for some reason I cannot make it that day, the change in her schedule can be disastrous. So, “Lunch with Mommy” is never in the early morning schedule; it is only added after I call to confirm.
Schedule-based living, however, can be a tricky proposition. On the one hand, a schedule orders the day, the expectations, and is comforting to Madison who has difficulty with transitions. Knowing “what’s next” is sometimes all it takes to calm her. Yet, routine schedules can also create a false sense of predictability that does not allow for exceptions. And life is just not that predictable all the time. If the schedule is too rigid, we both become trapped, unable to respond to other opportunities.
Even though Madison has an intellectual disability, uses only scripted speech, and cannot read nor write, she understands far more than she shows. In her limited speech, her number one phrase is, “Schedule, please.” And her next favorite is, “And then.”
When her schedule is given to her, she will often prompt the speaker, saying, “And then” multiple times, until she hears an activity that satisfies her. On Tuesdays, although she has no concrete understanding of the calendar or time, she seems to sense my visit, often requesting “Lunch with Mommy” before I have called.
Although poignant, I realize the “Lunch with Mommy” is also a break from work. And, hey, who doesn’t like a predictable break from work?
So, how do we keep my visits a “treat” instead of an “expectation?”
“Broaden the activity,” said Dr. Kathy Niager, owner and Executive Director of Trellis Services, Inc.  , Instead of, “Lunch with Mommy,” she suggested redefining the time as “Family Time,” and offer Madison other options, such as a phone call to Mommy or other family member, looking at a family photo album, or making a card to send to a family member.
Perfect! Well, probably not for Madison, but at least it keeps some structure in her day—and flexibility in mine.
On that Tuesday, “Lunch with Mommy,” finally made it to the schedule board. But it’s nice to know that “Family Time” is a new choice that will give us both more options.