In a universally neglected school for children with special needs in Brownsville, Brooklyn, 10-year-old Jordan was the closest thing the school had seen to a star. Against a backdrop of apathetic teachers, exhausted specialists, and surrendered children, Jordan weaved his motorized wheelchair through the hallways with a gleeful independence typically reserved for what the world would call an able, cognizant, or responsible adult.
Unfortunately on normal days, his cognizant teachers had no qualms about leaving Jordan in a powerless wheelchair, in which he could not wander, could not approach selected windows, could not turn his back in frustration, and could not accidentally or jokingly run over the tips of someone’s shoes. It was easier this way. I briefly became known as a pesty advocate for Jordan’s electric wheelchair. By title, I’m a speech-language pathologist, but I saw and see clearly the connection between one’s ability to communicate and one’s ability to go where one wants to go.
When I met Jordan, he was successfully using a Dyanvox Augmentative Communication System. But as a language enthusiast/idealist, I petitioned for Jordan to receive a Prentke-Romick Vantage as a way to target Jordan’s language/cognitive development. Our sessions were spent encouraging Jordan to demonstrate and exercise his ability to construct meaningful short sentences using Bruce Baker’s trademarked semantic compaction.
Jordan was a proud learner, but our sessions were recreational to him. I wish I would have been less frustrated by his lack of enthusiasm to learn. At it’s earliest stages, communication is hard work. For this reason, anticipating a child’s needs will diminish her desire to communicate. With special needs children, communication is VERY hard work. But because of their frailty, the community’s desire to anticipate their needs dramatically increases. This is an essential difficulty for a speech-language pathologist whose job it is to improve a child’s responsivity and communicative independence. Jordan could comfortably get by on the charm of his smile. When he came to school with no voice (a dead battery in his device), he was still happily fed.
I thought Jordan deserved a better education. I modified a standardized language test for him, allowing us to conclusively prove his intelligence to the most disinterested staff in the school. Jordan’s understanding and expression of morphology was understandably deficient, given his inability to practice and participate in the construction of verbal sentences, but his cognitive skills exceeded those of his cognitively impaired classmates. I was thrilled with the results, but when I wrote the report, his mother expressed reserved displeasure. How could her son, who “understood everything that was said to him,” possibly have receptive and expressive language skills several years his younger? He was entirely her world. Her only son. His nickname was “King.”
Some children would press their heads into the beads. Some would drift in and out of sleep. Some would spit and slobber in response to the dancing chicken I’d place on the table just outside of their reach. But Jordan would delight in seeing me twice a week, delight in locating vocabulary words in his device, delight in answering simple questions about color, size, and shape. Sometimes we practiced telling simple jokes. His laughter stopped everyone, for each moment, from being so cynical.
For a while, Jordan’s favorite initial expression was “Teeth… hurt…” I took him to the nurse’s room twice for this, but what could they do? Pain is a subjective symptom, and he couldn’t be more specific. I wonder now if this was a precursor of what was to come.
In the fall, I had moved on to another school, and in November, (fifteen days after Mary’s death), I received an email from a former colleague saying that Jordan was in the hospital. He had bone cancer and wasn’t expected to live much longer.
I went to the funeral soon after. A month later, his mother sent me a grief-stricken note thanking me. She didn’t include a return address to which I could respond.
At the school, a wave of sadness and complexity washed over some of the teachers. I’m sure the other children felt it too, the absence of a dimmed star student bringing well-wanted pleasure to every station he visited.
I remember, in the tiny funeral home, in his short casket, Jordan’s body wore a tie. He looked like a happy, gentle king.
