The Long Way Home
I’m driving my car-ride driven daughter around in the wee hours of a Sunday morning, the day that for most, is the laziest one of the week. “Lazy” is not a word we have the luxury of knowing.
A stream of consciousness runs through my sleep-deprived brain at mile 11 . . .
“What is the function of this behavior?” “Better remember to get gas or I won’t make it to work tomorrow.” “Did I turn off the coffee pot before we left?” “Will I be driving her around when I’m 64?” “Why does she do the things she does?”
And of course, “Why do we, her parents, do the things we do?”
Indeed. Why do we drive her around to destination: Nowhere-in-Particular, for what sometimes ends up being hours in a day?
The easy answer is because she likes it. She craves it. She insists on it. It makes her happy. Windows down on a warm day (or not – she doesn’t seem to care if it is 45 or 75 degrees), wind in her hair, she squeals with delight as we make a hairpin turn on the winding roads in our well-traveled neighborhood. Squeals turn to squawks as we turn onto the streets nearing our home. She has an internal compass that knows when we are within a two-mile radius of her car ride ending.
What makes her happy makes us happy.
Her world is pretty small, with not a lot of variety in what interests her – the “restricted interests” part of autism. She really, really likes going for car rides and taking long showers. We make attempts to broaden her world but meet with resistance. We remind ourselves, “She is who she is. We can’t force her to like something.”
But parents of kids with autism know that conceding to the fixations comes with a price. It isn’t easy saying yes to the demands.
There are consequences.
It can drive us crazy on the days when she gives new meaning to the words insistence and persistence. Those days when a couple of car rides don’t satisfy the primal need her brain is telling her to fulfill. Remember records – those round vinyl things that held our Beatles songs? I often imagine her brain to be like the needle of a record player, stuck in the groove of my well-worn and scratched first 45.
If it’s a day when she is in a car-ride-shower loop, we use a lot of not-free natural resources like gas and water. It’s also hard to get anything done when moving from car to bathroom all day long.
And of course there are the conflicting feelings in my heart and messages in my head from the dozen or more providers we’ve accumulated over the years. “Don’t give in to these demands. You will only reinforce them. Be parent-directed not child-directed.”
So what’s a parent to do?
Ask for help.
Parents often don’t ask for help with their child’s behaviors for fear of being judged.
Something must be deficient in our parenting if we can’t “just say no” or figure it out ourselves.
We often hear providers give advice that sounds so simple, without recognition of how hard it is to change behavior. If a provider is young and doesn’t have children, we may wonder if they truly understand. Parents of kids with autism love it when providers themselves become new parents. We’d like to ask, “How’s that working for you?” when trying to figure out one’s own child.
Be specific and don’t hold back.
If you minimize the problem, you won’t get the help you need so give details and the whole story.
Keep an open mind.
Refrain from immediately saying, “that won’t work” even if you’ve heard it and tried it before. We’ve tried so many things without success that it’s easy for us to become cynical about change and close our minds to advice. Do tell your provider what you’ve tried in the past and what the results were. No one has yet to definitively figure out the answer(s) to our kids’ hard-to-treat behaviors. It is always a collaborative work in progress.
Some of the ways we’ve addressed the car-ride fixation is to impose boundaries using a first-then approach, imposing a destination to some trips to challenge her comfort zone (going to the mall before it opens, picking up a few items at the grocery store, visiting a family friend), and continuing to introduce new things with the hope that she may take a liking to something. More time spent in a different activity means less time spent Driving Miss Daisy.
If that doesn’t work, I have a plan to at least be more productive. I’ll get a taxi license and earn back my gas money giving her and others a ride. Do you think anyone will mind if Pandora is set to kids’ songs and my permanent fellow passenger is spitting just a little?
Tell us your story of your child’s insistence on something or another and how you have handled it. We’d love to know what has helped.