Our 19-year-old son, Ben, is growing impatient. We’re in the parking lot of the Greensboro Science Center, loading a backpack to bring with us. He removes his favorite blanket from
Our 19-year-old son, Ben, is growing impatient. We’re in the parking lot of the Greensboro Science Center, loading a backpack to bring with us. He removes his favorite blanket from his lap and slides open the door of the minivan, signaling that he’s ready and we’re too slow.
Ben was born with Rett syndrome, a rare genetic disorder that typically affects girls. He uses a wheelchair, pushed by a caregiver — usually me; his dad, Ryan; or one of his two younger brothers — to get around. He’s nonverbal but vocal; he makes distinct sounds to declare his excitement or a pressing need, such as “Let’s keep moving,” or “I see a snack bar and would love a treat.” When he’s overjoyed, he kicks his feet and flaps his arms.
Two years ago, our family discovered the Greensboro Science Center, with its winding boardwalks leading to various creatures outdoors, the indoor Shark Reef tank with floor-to-ceiling views of green eels and beady-eyed sharks, and a science museum with interactive exhibits and play areas. Its accessible parking, paved paths, and elevator make it an uncomplicated outing for families like ours.
In recent years, many North Carolina destinations have made it easier for people with disabilities to explore. Greenways and rail-trails have popped up all over the state, giving families miles of paved paths to traverse. More coastal towns are offering beach wheelchairs and nonslip beach-access mats. Museums and art galleries have set up sensory-friendly rooms to provide breaks from crowds and noise.
Ryan and I take credit for nurturing an adventurous spirit in Ben. When he was just 2 weeks old, with a tuft of red hair not unlike Woody Woodpecker’s, we took him to a Charlotte Knights baseball game for his first outing. Trips to the beach, walks on the greenway, and visits to the park all happened before he turned 1. At 2 years old, he hiked to the top of Crowders Mountain in a backpack carrier.
From the start, Ben took hold of our hearts. We didn’t find out that he had Rett syndrome until he was 6 months old. With the help of multiple therapies, he pushed himself to crawl, sit up, and hold a cup. At 3 years old, at a park in Davidson, Ben struggled into a sitting position on his own for the first time. He practiced more than 10 times, his family cheering him on.
In many ways, both emotionally and physically, it would have been simpler to keep Ben close to home, to keep his experiences limited to what we knew. We didn’t plan to include Ben in everything. Our trips simply evolved: Daniel Stowe Botanical Garden in Belmont, the North Carolina Zoo in Asheboro, Kate’s Skating Rink in Indian Trail (we pushed his wheelchair around the rink), Hendersonville’s Garden Jubilee.
As Ben’s younger brothers became more active, we traveled as a family. After Ryan restored a 20-year-old Jeep Wrangler, it became Ben’s preferred mode of transportation and his dad’s point of pride to drive down back roads with his son in the passenger seat, his red hair blowing in the wind.
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As a young (and lightweight) child, Ben was easily transported in a carrier or stroller. We could lift him over stairs and other obstacles. For an adult, with a heavy wheelchair to manage, outings require much more planning. We consider parking, restrooms, and walkways: Are exhibits and services accessible to a person in a wheelchair? Will stairs be a problem? Is the path gravel or paved? Having to leave disappointed because parking, restrooms, or walkways were difficult to navigate is frustrating. Ben may not always understand that he’s been left out, but we certainly do.
Sometimes, it’s the kindness of others that makes the impossible possible for Ben. At Fort Macon State Park in Atlantic Beach, park rangers saw us struggling in the sand with Ben’s regular wheelchair. They lent us a beach wheelchair with inflated wheels that are made to maneuver on sand. A sigh of relief: We could roll Ben to the ocean without backbreaking work — or, worse, having to curtail our beach vacations with him. My chest physically hurts when I think about Ben being left behind — not being able to dive into the ocean and splash around until he exhausts himself.
Usually, our efforts are rewarded by people who want to see Ben involved in an activity. My heart swells with gratitude when people see beyond Ben’s disabilities. As his parents, we see his special gifts easily, and when others do, too, he belongs — not only to us but also to a community.
When Ben was a child, we traveled to Bryson City with our boys and their grandparents for The Polar Express train ride, an authentic presentation of the book and movie. It was a risky move because Ben had to sit still and be quiet for longer than he was accustomed. My body felt spent from trying to hold Ben in the seat. I was counting the minutes until the ride was over.
At first, Santa bypassed Ben and spoke to our younger boys about what they wanted for Christmas. For a split second, I was annoyed that Santa had ignored Ben. But then Santa sat down on the edge of the armrest and asked to hold him. I was confused at first — this special attention was a surprise. Our noisy, squirmy son fell silent as he sat on Santa’s lap. I snapped a photo while I held back tears. Ben may not be able to speak the words “thank you” or “I love this,” but the smile on his face and his squeals of delight are all we need to understand him.
Last summer, Wake the World, an Asheboro-based nonprofit, invited him to participate in an adaptive wakeboarding event on Badin Lake. Each year, Wake the World coordinates dozens of events using aluminum-framed “cages,” some of which are made by Richard Childress Racing in Welcome. Although Ben refused to stay in the cage and be pulled by the motorboat, the volunteers stayed with him for 45 minutes while he floated on the lake. They noticed me worrying about how much time he was taking in the water and reassured me that it was OK. We do this all the time, they said. Their words calmed me. This was Ben’s community. They were there for him.
Sometimes, an activity is easier than we think. At a family reunion near Hyco Lake, we loaded Ben into a large inner tube with a life jacket. With family watching from the dock, his brothers held on to the tube while they drifted for more than an hour. Ben’s squeals could be heard across the lake as his brothers let him grab their feet while they floated beside him. I couldn’t stop smiling: My three sons were playing in the lake together.
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At the Greensboro Science Center, Ben directs our route from his manual wheelchair, using his body and arms. When we pass by the doors to the zoo, he twists his torso to show us that he wants to go there next. We move quickly — he’s anxious to be outdoors. He pushes the button on the wall to open the automatic door leading to the animals.
As we walk down the winding paths, we watch as red pandas scramble up tree limbs and meerkats climb rocks in their habitats. Ben appreciates a bit of mischief — he laughs when he grabs at someone’s hat and giggles when I “find” him under a blanket that he’s put over his head.
His focus intensifies as his eyes follow the kids playing. I can only guess that this place combines his love of the outdoors with the antics of animals and little kids, all in one location. The commotion keeps him entertained for long periods of time.
When he’s ready to see the barn animals, Ben directs us with his hands. He probably remembers petting the goats during a past visit — his memory for people and places is remarkable. He lets out a few high-pitched sounds, a sure sign that he’s losing his patience. We aren’t rolling fast enough for Ben. He’s anxious to get to the next exhibit, but we can’t complain — it’s what we taught him.