It’s storming in South Georgia and traffic is backed up for miles. I’m at the wheel, which I stole from Bill at the last pit stop, slipping into the driver’s seat as he waited for a Happy Meal. It was raining too hard for him to protest, so here we sit on different sides of the minivan inching our way north.
I check the rearview mirror to ensure our daughter (and sole passenger) is still napping. As the minutes tick away, my anxiety mounts. Erin’s sleep is like gold dust which you hate to squander standing still. Travel with our 19-year-old daughter, who has autism, has always been an unpredictable undertaking. After an epic meltdown on a flight a few years ago, we knew COVID requirements would not enhance her performance, and driving was the only option for a visit to Bill’s mom in Florida.
As Bill reviews our route home, I take in the tall pine trees that line I-95. The static from an earlier music search caused Erin to stir so we’ve happily settled on silence and the sound of rain on the roof.
This is a game we’ve played all her life. It’s called: Whatever it takes.
Born with a host of sensory issues, Erin has struggled with sleep all her life. As a baby she could only drift off while being held. We’d gingerly pry her from our chest, place her ever so gently in the crib, drop to the floor and army crawl out of the room, willing her not to realize she was alone—and to scream. All these years later, it’s impossible to imagine her ever being alone.
Parenting a Child with Special Needs
As soon as we received her diagnosis, we enrolled in early intervention and enlisted the specialists. We’ve tried all the therapies and diets and meds, yet Erin’s cognitive function remains roughly at K-1 grade level. We are her point people, and we know nowhere else to be but within arm’s length.
I know we have to pull back and promote independence, particularly as we approach the cliff all special needs parents dread: adulthood, or the year your child ages out of state-mandated educational services. We have no idea what she or we will do with her days. We have roughly 18 months to figure it out.
But for today, we’re on another journey. Every now and then, the traffic eases and I speed up, and Bill raises his hands dramatically as if bracing for a crash. Given our silent game, I can’t respond as I’d like. Instead, I suggest he close his eyes and relax.
He pretends to rest but he’s not comfortable with this arrangement. After 22 years, like many couples, we’ve fallen into our roles and routine. He drives. I play copilot, DJ, sharer of fun facts from random reading material and purveyor of snacks. For a long time, this worked fine.
Early in our marriage we lived in London and spent most weekends exploring the countryside, just the two of us.
We took our time meandering down uncharted paths, slowing down for sheep crossing and the occasional tractor. I’d sprawl colorful maps across my lap, reciting the names and history of tiny towns, ancient ruins, and rolling terrain from our Fodor’s and Lonely Planet travel guides, all the while reminding him to keep on the correct side of the road.
“Turn here. No, the second exit off the roundabout. I think we’ve gone too far—but look! This pub is adorable. Let’s stop here.” And we would. We had nowhere to be. There was no car seat in the back, though we very much wanted one. So we’d linger over a pint or two and wonder what the rest of our day and days might bring.
When Erin and her three younger brothers eventually arrived in surprisingly quick succession, copilot duties expanded to keeping the little people fed, dry and happy. While the boys can now pretty much manage that on their own, Erin, who also has a seizure condition, still requires close surveillance—which adds to the allure of the driver’s seat.
If left to her own devices for long, Erin can manage a whole host of alarming activities—from dispensing the contents of a water bottle to taste-testing wayward objects from the darkest corners of a car floor. More in sync with her moods and preferences, I’m frequently in the hot seat, but I find it a welcome and admittedly amusing switch to see Bill take my place.
When Erin wakes, he parcels out the contents of the Happy Meal one by one, including a stuffed unidentifiable figure from the movie Soul. I can’t help but giggle as he contorts to clean ketchup from her face, fingers, and chair while she fires off requests for her favorite songs. “Dynamite by BTS, Dad! American Girl! Let it Go!!” He scans my phone for her selections. Struggling, he tries to distract by pointing out a Target truck. He suggests we switch seats. I decline.
Eventually, though, we have to stop, get gas, and trade places. I dole out popcorn and Peanut M&Ms as we make up time in the Carolinas. I start to doze off listening to Bill pepper Erin with questions about the Puppy Dog Pals and passing cars. She tugs on my shoulder every few minutes to ensure we are both paying attention—and that the snacks have not run dry.
We couldn’t be further from the English countryside and that impromptu pub lunch.
I wish we could pay those two kids a visit, pull up a chair, and order a pint. I’m not sure where I’d begin or whether any of this should be shared with that carefree couple. They knew as much about what the future held as I do now—nothing. But, all questions and unwelcome milestones aside, listening to Erin sing along with Ariel, I do know, as we did back then, that now is okay. I guess what I would tell them is to turn up the volume, switch seats every now and then, and enjoy the ride.