Celebrating each child's gifts
is a member of the board of directors of HMS School for Children with Cerebral Palsy (www.hmsschool.org)
My son Sean has what is classified as "severe quadriplegia cerebral palsy." At age 15, he is not able to walk or talk and is at risk of seizures, pneumonia, and other illnesses. He's had more hospital admissions than I can count on my fingers and toes. But when you look beyond the wheelchair, leg braces, and feeding tube, you will see a child who is full of life and joy.
When Sean was just 8 weeks old, a prominent neurologist reviewed his MRI scan and pronounced: "It's tragic. Nothing can be done." On the one hand, he was right. No amount of medical intervention could "cure" Sean. Yet he is the opposite of tragic.
He has a terrific smile and an infectious laugh. His biggest strength is his ability to connect with others, which he does with a simple eye gaze and smile. What he desires most in this world is to make friends. He cannot say the words I love you, but he tells me in his own way.
It has taken me years to get to a point where I can fully accept the circumstances surrounding Sean's cerebral palsy and the impact it has had on our family. As with grief, there were stages of denial and anger as I moved toward acceptance. And here's the bonus: Beyond acceptance, there is true joy. In the early years, I found myself overwhelmed, caring for Sean and his two young siblings. Now that I see how Sean's teen siblings have grown into caring, compassionate individuals with wisdom and tolerance beyond their years, my heart is full.
Family vacations take a little extra planning and effort. Packing for camping trips means tents, coolers, and bug spray - but also Sean's medications, feeding equipment, adapted bike, jogger, and kayak seat. He does what we do. These preparations take time, but the look on Sean's face as the wind blows in his hair while we're biking downhill tells me it's worth the effort.
Sean's ability to participate so fully in our family's life is the result of the expertise and creativity of the team of teachers and therapists at HMS School for Cerebral Palsy in Philadelphia. Sean and his classmates come to HMS with varying diagnoses - cerebral palsy, traumatic brain injury, and other neurological impairments - but this does not define who they are.
At HMS, Sean is seen for his strengths, not his limitations. A nurturing staff of educators, therapists, and nurses helps Sean and his 60 schoolmates with assistive technology to facilitate movement and communicate with the goal of being as independent as possible.
Too often, children with disabilities end up as observers in their own lives; HMS works to make them participants. For example, Sean doesn't just watch me bake cookies; he's in charge of the food processor to chop the nuts and the mixer to stir the batter. Thanks to an electronic control device, he can operate any device that plugs into an outlet.
Sean uses an assistive-technology device activated by a head switch to communicate with us. We program the device with his news of the night, which he delights in sharing with his teacher and classmates in the morning. When he gets off the bus in the afternoon, his eager smile tells me he has news to share of his day - which his teacher will have programmed into his device. In many ways, I'm fortunate. How many moms get more than a single-syllable answer when they ask a 15-year-old about his school day?
Music, art, and movement play a critical role at HMS. For 30 years, HMS has partnered with Germantown Friends School to stage On the Other Side of the Fence, a musical dealing with issues of diversity and acceptance. Each child has a featured role, whether singing a song using his or her own voice or with assistive technology. This heartwarming program is now being made into a documentary, a model of what can be accomplished when acceptance triumphs over ignorance.
At HMS, Sean is celebrated for the unique individual he is. Isn't that what we all want for our children? Can you imagine what the world would be like if we accepted - no, celebrated - each child for his or her individual gifts? Bring on the joy.
E-mail Kerri Hanlon at firstname.lastname@example.org.