Travels with a Special Needs Child | T+L Family
Published: July 2009
By Whitney Hamilton Cobb
What do you do when a son's physical challenges make vacations a near impossibility?Here's how one family hits the road
At 17, almost three decades ago, I lucked into an art history tour of Egypt. We arrived in Cairo one mystical evening to the tinny music of the last prayers of the day twisting through loudspeakers atop every mosque in the land. Sodium-vapor lights colored the city orange, backlit by a rising moon. My skin tingled: I was a traveler. I would always be a traveler.
But sometimes our traveling doesn't work out exactly the way we envision.
It seemed to, at first. Ken and I married and headed out on one expedition after another in our old truck with a few changes of undies and a tent. When we became parents, our son, Galen, joined us. We dug sand fortresses on Mexican beaches. In central Oregon's old-growth forests, we crept over nursery logs, the enormous mossy trunks of fallen Douglas firs that provide the ideal habitat for baby trees.
When Galen was six, however, Julian was born, and easy to travel with he has never been. As an infant, Julian suffered a brain hemorrhage, and he has been our surreal boy ever since, his development shaped by autism and cerebral palsy and obsessive-compulsive disorder. Julian loves his fingers, uses them to frame his world and splice it, to create shadows, and to shake like castanets. Certainly they aren't to be covered by mittens, nor his head by a hat. Walking came slowly, but when it did, Julian went straight to jumping—his teachers called him Tigger. But while Julian would bounce for hours, getting him to bounce in a direction—you know, like take a walk—was a different story. For years we carried him in an excellent backpack, but eventually he was just too gangly.
To keep our family mobile, we bought a big-wheeled jogger stroller. At the time, we were living in the charming town of Monmouth, in Oregon's Willamette Valley. I was teaching elementary school science part-time to be available for Julian. Somehow Ken and I had energy that wasn't fully tapped, so we adopted two children from Sierra Leone: Koryeh, five, and Lamin, four. They are from the same small tribal group, the Limba, and once lived in villages near each other. People ask, "Are they brother and sister?" and we answer, "Now they are." From the start, they were spectacular kids, brimming with curiosity and joy, cracking hazelnuts gathered on a local walk, bringing the meats to me in the kitchen, faces radiant as I dropped them into the pancake batter. Our household was instantly loud and raucous: the laundry endless, the love lifesaving.
With so many kids, we decided we needed to move back to Colorado and our extended family. I will leave that road trip to your imagination with just these details: four children, two dogs, a cat, a rat, 12 Georgia wood beetles in a plastic habitat, and 1,246 miles.
That was seven years ago. Galen is now 19, Koryeh 14, and the other two 13. As Galen and Koryeh and Lamin's world has naturally expanded, Julian's, and thus our family's as a whole, has contracted. Julian doesn't vacation well. He generally will not sleep unless he is in his bed at home, and his behavior is unpredictable and hard to manage in new situations. On our last plane trip together, we sat in a pack of Cobbs, three in one row with Julian at the window, two in front of him and one behind. Julian bounces and kicks the seat; it's a compulsion we're used to (and may even lean into for a lumpy massage), but we wouldn't dream of subjecting fellow passengers to it. Thus we tend to stick close to home.
Which doesn't mean that we don't keep our eyes peeled for adventure. We spied a recumbent tandem bicycle on a trail one day, and sure that Julian would be enraptured, pooled cash from his grandparents to purchase one. A recumbent bike is one of those odd contraptions in which you sit straight up rather than lean over the handlebars, your legs out in front of you. Our tandem is two of these joined side-by-side. We have special supports and foot cages to keep Julian safely on the bike. The seats adjust easily, so all of us can take turns with him. Julian's not much of a pedaler, preferring to watch the chain whir and the gears flash. Occasionally he becomes intrigued enough with his partner's efforts to join in, and the pace picks up—while Julian's cerebral palsy has him noodly in the upper body, he has his dad's musculature in his legs, and boundless energy. But often Julian is twisted about, looking at what we've just passed, laughing at his sibs spinning near and far. Still, he is a nice companion, chuckling when we poke him; when Julian's happy, he's such sweet company.
My folks own a condo at the edge of the Eagles Nest Wilderness, an hour's drive into the mountains west of Denver. Anytime we have more than a weekend to spare, up we head. There, we've added new sports to our family repertoire. We career down icy hills, piled on a couple of inner tubes; snowshoe to high-country cirques to picnic on Ken's secret sandwiches (turkey, avocado, bacon, and raspberry jam); hike through meadows and stands of aspen to lakes freckled with rising trout.
Machu Picchu can wait.
Whitney Hamilton Cobb works in admissions and college counseling at a K–12 school in Wheat Ridge, Colorado.