When I was a teenager and into early adulthood I was a maker of lists. Grocery lists for the store, homework priority lists, bulleted resolutions every New Years Day, and even “Lists of Men” in university (guys I thought were hot, in order of their hotness). Making lists made me feel on top of things and in control during a fairly chaotic time in my life: the transition from child to independent adult.
Now that I’m a grown-up I make far fewer lists. I still write down daily work-related tasks like interviews and blocks of time for writing, and about once a month I put effort into the Superstore list, but for the most part, life is so predictable I know what’s coming next and what chores I need to complete so there’s no need to write it all down.
The irony is that just as I have become liberated from schedules, Bennett has become a slave to them. We are now the owners of three sets of visual schedules that help our autistic son do everything from choose an activity during free play, to put his pyjamas on at bedtime.
Many kids and adults with autism benefit from visual schedules. These are binders filled with little pictures of things my son might do during the course of the day. The idea is to plot tasks out for him visually on a velcro strip so there won’t be any surprises and to ease transitions between activities. Since he can’t yet read, pictures work best.
The idea of the visual schedule was introduced last year when Bennett was in the Specialized Autism Services program through Renfrew, his school. His aides used an activity schedule to direct his play and get him doing things related to the speech, fine motor, gross motor and behaviour goals in his Individual Program Plan. The teachers at his school also use them in the classroom. You can’t just tell Bennett, “Now we’re going to do a craft,” because he’ll say, “No, I don’t want to.” But if you show him a schedule with the craft icon, he’ll do it. The schedule was like gospel.
I started using one in the mornings for getting dressed, and in the evenings for bedtime, to motivate him to brush his teeth, put on his pants, etc., without having to constantly nag him. With the schedule to refer to, he knew what was expected of him.
Happy, happy, joy, joy, right? Well, kind of, sort of, not really. Life under the rule of Bennett’s schedule is constricting. The older he gets, the more he gets set in his ways. We are now at the mercy of, and rely on, the schedules. They really are like gospel in that if we don’t follow them, behaviour hell breaks loose.
For example, Bennett is currently obsessed with the cartoon Super Why. In the fall he got in the habit of watching Super Why once in the morning and again before dinner. The problem was he would watch only the same two episodes over and over again. I could suggest different episodes, but no. Following the advice of his school psychologist I finally resorted to creating a Super Why schedule. I printed off images that represent every episode of Super Why and I cut them out into little schedule squares. Now, I give him two different Super Why choices to choose between. The strategy worked to get him watching different episodes, but I fear he’ll be watching Super Why FOREVER (case in point: he wants to go as Whyatt from Super Why for Halloween, a holiday that’s eight months away!). If there’s no Super Why, if for some ungodly reason Netflix is NOT WORKING, Bennett turns into Linda Blair from The Exorcist.
Other routines he’s stuck in (but that we don’t have a visual schedule for) include: eating cheesy eggs for breakfast every Saturday morning, watching Joseph and the Amazing Technicolor Dreamcoat every Saturday afternoon, and playing hide-and-seek every night after dinner. He starts planning the weekend on Thursday, trying to get me to commit to cheesy eggs and Joseph well in advance. It limits our ability to be spontaneous (pancakes for breakfast? Forget it!). It’s also exhausting. I would love to be able to tell him to go get dressed and have him run off and do what he’s told, just like that. (The one saving grace is when we travel we leave the schedules at home — outside of the ordinary, his need for routine lessens considerably.)
But for Bennett at home, these routines and rituals are a life-saver. I can’t imagine what it must be like to be inside his brain. I think that to him, the world must be a confusing, overwhelming place filled with words, body language and nuance he just doesn’t understand. I sometimes think that when I open my mouth and tell him a bunch of stuff all at once, he hears the woman from the Charlie Brown telephone, “Wha-wha-wha-wha-wha-wha…” So those simple pictures on a velcro strip translate the hieroglyphics of the spoken word into commands he can understand. Like my adolescent and young adult lists, Bennett’s visual schedules bring order to his world.