School Surprise (a day in the life #30)

It’s a place I never thought I’d set foot in (just one of the many in that category now). But really, how much of life does end up as we’d planned? The halls of the Conductive Education Center were lined with wheelchairs, standers and adaptive equipment. A peek in the classrooms opened my eyes to a world of kids working hard, teachers encouraging and motivating and progress happening.

Who knew this many kids were alive and thriving and working with every ounce of their being with bodies that contort, limp, and refuse to cooperate? Who knew this reality existed for so many? Who knew that school for so many includes therapy–therapy for learning how to move your tongue, how to swallow, how to get your arm to reach your mouth, and every other imaginable thing that comes so naturally to typical kids. It’s not the type of education you’d ever dream your child would need.

Many kids are getting their backpacks on this morning and heading off on big yellow bus for a new school year. But there’s a whole host of other kids getting strapped into wheelchairs, taking their breakfast by feeding tubes, and fitting their stiff feet into braces. Siblings are brushing their teeth and hair, parents are lifting them into the car and trying to gather everything essential for the day.

My feet were slow in arriving here the first day. I’ll just do this one last effort before I give up. I was tired of doing therapy and getting nothing back. Putting hours in just to get the head lifted a little higher. And then losing all of it after a week of sickness. I wanted the stamp of “THIS CHILD WILL NEVER DO ANYTHING” so that I could give up. Guilt-free.

Calvin was too impaired for the regular classes. Most of the kids have cerebal palsy but have more function than Calvin. Still the soft-spoken and confident therapist, Andrea, wanted to try. Even if just for a few months, perhaps she could find a way to maximize his potential. Her hands moved with his body knowingly. She understands the stiffening of the joints, the floppiness of his torso. She understands his desire to participate and frustration with a body that will do nearly nothing. And so she gives and keeps on giving cues to the brain and helps to the body.

Her Hungarian accent plays in my mind as I continue the therapy at home, “Roond and roond the garten like a leetle bar” (round and round the garden like a little bear…). After three months of working with Calvin she turned to me and said, “Dear Kara, I do not know how far he can go, but I know he can go more. His head is small but he wants it. He wants to move. He wants more.” I knew this meant I was not going to get the stamp, the get-out-of-therapy-free card. And we continue to work and train. It’s not for the Olympics–there’s no medal at the end of hard core work and  training, just hope for one more piece of independence and ability.

The teenager’s classroom is right next to the room where Calvin works. After each session Andrea takes Calvin in and the room fills with “Hey there little buddy!” and “Way to go Calvin!” It’s said in slurred speech and with great effort. A teenager, John, laying on the floor pats Calvin’s head and smiles wide, “Way to go buddy, you keep on working hard.” The compassion takes my breath away.

These classrooms are rich. These are classrooms full of kids who know what hard work is. Who fight incredible odds and harrowing disability. Another girl is struggling to stand between bars. Her feet are turned inward and her head drops to one side. She’s beautiful with long chestnut hair. Her body shakes as she tries to stand to catch a better glimpse of Calvin. A smile fills her face while her head shakes with exertion. 

Recently I found myself at a table with five of these teenagers. They talked and carried on much like every other table of teenagers I’ve ever sat at. They joked and talked all the while struggling to get food in their mouth or more pop in their cup. The scariness of the place has faded. It’s now a place of heroes to me. Of people I respect and admire. A place of kids with dreams like any other kid.

Calvin’s dream is to get the ball that is just one. inch. away. Maybe this year?