The most common motor disability in childhood is cerebral palsy (CP), a debilitating condition that affects over 17 million people worldwide. Despite the fact that 1 in approximately 323 children in the United States has CP, according to the Centers for Disease Control and Prevention (CDC), the condition remains a mystery to most folks, maybe even to you. I would like to take this opportunity to do something about that.
When my wife Bethany and I realized there was still something missing from our family after the birth of our first son Alex and the adoption of our second son Truman, we decided to adopt a little girl. Not necessarily interested in enduring the Terrible Twos a third time, we agreed to search for an older child in need of a loving home.
In China, where we had adopted two-year-old Truman, children born with disabilities are often overlooked by prospective adopters who have their hearts set on healthy infants. These forgotten children grow up in what the Chinese government calls “Social Welfare Institutes.” You and I call them orphanages. Our Tiana, born with cerebral palsy, spent the first seven years of her life living in a SWI, hoping and waiting for a family to call her own.
One look at the irresistible smile on Tiana’s face in a photograph posted on our adoption agency’s website was all it took for us to know that we had found our daughter. The fact that she had a diagnosis of CP was irrelevant to us. But our social worker made sure that we knew what we were getting ourselves into, (even though no one really knew what we were getting ourselves into.) She wanted to be certain that we could handle raising a child with special needs.
Cerebral palsy, caused by various factors that disrupt the formation of fetal and infant brains, affects everyone differently. Some children exhibit increased muscle tone, or tightness, that affects their movements on one or both sides of their body. Some kids are only affected in their legs. Some have such severe spasticity that they are unable to walk or perform routine functions. Still others may have cognitive difficulties, sensory issues, and problems communicating.
It was love at first sight when Tiana walked into the room in Nanning, China, where we had been waiting to meet her. Her gait was awkward and it was obvious that walking was a struggle for the young girl, but at least she could get around on her own. Only 58% of kids with CP can walk without assistance. Tiana was fortunate to have undergone several surgeries, before we met her, that eased some of the tension in her legs, allowing her to walk.
Tiana does exhibit other symptoms of CP, but out of respect for her privacy, I will not go into further detail here. (Does the word “privacy” apply to the families of newspaper columnists?) If you want to learn more about Tiana, I would simply encourage you to talk to her and get to know her for who she is as a human being, not as a sufferer of a medical condition. You will discover that she is a remarkably kind and patient person. She is generous and loving. She is fiercely independent. She is hilarious. And she works harder at everything than any kid I’ve ever known.
People with CP may appear to be “different”, but I assure you that they want the exact same things in life as everyone else. They want to love and be loved. They want to be accepted just as they are. They want to have friends, go on dates, drive cars, and have families of their own.
What they don’t want is pity. They don’t want special treatment. They don’t want to be known as the “inspirational kid” everywhere they go. Kids with CP are human, and they make the same mistakes all of us do while navigating the hazards of growing up. They get angry. They make bad choices. They leave their dirty socks on the floor instead of in the hamper. They deserve to be held accountable when they screw up, and they deserve to be forgiven for being as human and imperfect as everyone else.
Most of all, people with CP want, and deserve, to be treated with respect and kindness. That begins with acknowledging them. Have you ever averted your eyes when a person in a wheelchair came into your field of vision? You didn’t do it to be rude. Quite the contrary. You were raised to believe that staring is impolite, so naturally, you’ve become conditioned to simply look the other way.
Now imagine yourself being in a wheelchair, or walking with obvious spasticity, and seeing almost every person you pass on the sidewalk look the other way as you approach. You are a living, breathing, feeling, human being, just like everyone you meet, yet you are almost completely invisible to them. It’s as if people are unaware you even exist.
March 25 is Cerebral Palsy Awareness Day. If you see someone with CP, do them and yourself a favor; don’t look away. Simply say “Hello.” The best gift you can give a person with CP, or anyone else for that matter, is letting them know that you see them and that they matter.