Kendra Johnson is eight years old and has just completed second grade at Poinciana Elementary School. She loves reading, horseback riding at Naples Equestrian Challenge, swimming, music, dancing, and singing. According to her parents, Tonya and Ken Johnson, “She’s a healthy child who has arthrogryposis, which is a big word for a lot of anomalies.” Kendra was borne with club feet, scoliosis, a dislocated left hip, decreased muscle tone, and contracted joints. She was born at the North Collier Birthing Center and airlifted the same day to All Children’s Hospital in St. Petersburg where she was diagnosed.
Since the pregnancy was normal, Kendra’s parents were totally unprepared and overwhelmed at first. The Johnsons agree that early intervention is crucial to making the most of special needs situations. As an infant, Kendra began physical therapy with Annmarie Algigi and occupational therapy with Brenda Chilstrom, and both continue to work with her today.
Part of the early intervention included working with a family therapist at All Children’s Hospital, so that the whole family, including then four-year-old Rebecca (Becca), could reach acceptance of the special needs situation. According to their parents, Kendra and Becca are each other’s best cheerleaders.
From the beginning, the family traveled to the Shriners Hospital in Tampa every two weeks to have Kendra’s feet casted in preparation for surgeries for her club feet at ages six and nine months. By the age of two, Kendra also had had surgery for her dislocated hip. Last summer, she underwent surgery to release the contracture in her left elbow. All Kendra’s surgeries have been performed at Shriners Hospital at no cost to the family.
Kendra entered school as part of an Exceptional Student Education preschool program that included academically driven occupational therapy. This means that she had help with such things as accessing the classroom and learning to hold a pencil. Today, she is in a regular classroom and has an Individualized Education Plan that provides for some accommodations in physical education classes, and a 504 Plan that will give her a time adjustment on standardized tests.
At the time of Kendra’s birth, both Ken and Tonya were employed in the corporate world. Now both are self-employed. They credit Kendra’s special needs with opening them up to many beautiful things. “Our lives are better. It’s made us slow down,” Ken states. “We wouldn’t have done that otherwise.” Self-employment gave them freedom and flexibility, which has enhanced family life.
It’s a Wonderful Life
In telling their story, Tonya wants new parents of other special needs children to know life is not over. “It is overwhelming, sometimes. Yes! But really, it’s a wonderful life. A much different life than you planned is just beginning.” She advises special needs parents to talk with other parents, just as they would in any parenting situation. She adds that how you present your child is important. In her experience, “If you present them as okay, they are accepted.”
As a mom who always had a plan, Tonya has learned to “let go and enjoy the ride.” She feels truly blessed and able to embrace the challenges ahead. She feels supported by family, friends, and the family’s church. Tonya had served on non-profit boards in the past, and she now is on the receiving end. “We will be givers again when the time is right,” she says, acknowledging the many people who make services for special needs children possible.
Life is very full for the Johnsons. Becca will be an eighth grader at East Naples Middle School and is active in sports. “Both of our daughters are outgoing, smart, and beautiful. We have the same expectations for both of our children. We want them to be giving and loving and contributors to life,” says Tonya, adding that “both have chores, based on their ages and abilities. Kendra can put away the silverware and fold wash cloths. We don’t enable her. Of course we make accommodations, but she still has to perform as a functioning member of the family.”
Kendra Johnson sits tall and proud on “Dottie,” the horse she rides weekly at Naples Equestrian Challenge (NEC). “I like Dottie because she goes just the right way. She’s like a friend to me,” Kendra says. Her face lights up when she talks of her fellow equestrians: Camden, Dominique, Zachary, and Luke. These five riders are working toward independent riding. “We know it’s therapy, but the best part is that it’s fun,” Tonya says. NEC also offers an inclusive summer camp so that ‘typical’ siblings also can participate.
Ken has seen a huge difference in Kendra’s balance since she started riding at age three. “Horseback riding definitely strengthened her legs. When she started she used a walker, and in just a few months she was walking on her own. She also has more strength in her arms,” he says. The family is grateful for the volunteers, financial contributors, and the United Way of Collier County who make it possible for special needs children to ride for a nominal fee.
“Ours is a success story,” says Tonya. Clearly, this family has been able to make the most out of the life that they have. They are achieving what we all strive for.