By Doro Hepe
If we are to understand what our children need, we must learn how to give them the greatest gift: We must let them lead.
With just this thought, I followed.
A beautiful 16-year-old high school student with Down Syndrome asked me to take her to the beach. I had worked briefly during the school year as her classroom aide and found myself as her companion for the summer.
We journeyed to the beach in silence. Though speech failed as her form, the desire to communicate was in her eyes. She would show me the way of a graceful language, fully translated in the heart. Arriving at the beach, I expected her to rush to the ocean. Halting the expectations that numb experience, I followed her. It was my turn to learn.
She led me a distance from the shore to a rocky stretch with pebbles and stones that caught her attention. She sat at the edge of a tide pool, her legs crossed, as if beginning meditation. With ceremony and apparent reverence, she picked up a stone, caressed it, and whispered something I could not understand. She rocked the stone gently in her palm, then tossed it into the water. She picked up another stone, and performed the same ritual.
I was aware that I was no longer in her world. I sat on the beach and watched with fascination for over an hour as stone after stone received the same kind of blessing. Then, approaching cautiously, I said, “It’s time to go.” She stood up, gave me a grateful look, and followed me to the car.
There was silence as I drove, until we were almost home. She reached over, touched my shoulder, and said, “Thank you.”
I sensed deliverance from my appointed place in her life. Everything I had been asked to teach her was diminished by the lesson she had given. Clearly, her respect and honor for the natural elements of earth were far more profound than her accomplished classroom exercises.
The next day, I asked her what she would like to do when she is an adult. Her eyes sparkled. “Teacher” she said. I have no doubt that her contribution to humanity could be extraordinary. Her chance would depend on a system willing to take responsibility for providing her with opportunity.
Many more children called upon me with invitations into a realm that could, I believe, grace the world with transforming magic. A four-year-old autistic boy led me from his “entertainment center.” a room filled with every imaginable toy, into his mother’s garden. Without hesitation, and without words, he introduced me to a tribe of bees sunning on a lavender bush. Mesmerized by their dance, he remained still among them until his mother pulled him away, exclaiming that they would bite.
He took my hand and led me to a rose bush, where, with gentle respect, he plucked a rose petal and rubbed it against my cheek. Not once speaking to me, his message was understood.
This boy spent his days in speech therapy; his parents hoped that he would one day become a member of a world a great distance from his own. His room, filled with colorful and seductive distractions, seemed little proof of his “attention deficit” as I watched him spend a full hour petting a brotherhood of snails, inventing a game of persuading them out of their shells. Would he one day master speech and make his parents proud that he could conduct business in culturally accepted manner? At the age of four, he treasures the beauty slipping from the planet. His presence is a powerful statement to the “civilized world.”
My days continued with enlightening encounters. On a home visit with a mother who described her son as having three extra chromosomes, I was stunned by a 12-year-old boy with an intrepid spirit. He had no speech, only grunts with varying inflection, apparently understood by his mother.
He shook my hand and made intense eye contact, his nose nearly touching mine. His grunts were whispers, while his gestures shouted a need to be heard. His mother pulled his hands to his side, with reprimands that pointing was not polite. He pulled me to his computer and entered a program with pictures. He identified them by typing in the words. With his back to the rest of the family, he made careful gestures, his eyes locked to mine. His inability to communicate in ways his parents expected kept him a prisoner, his thoughts and emotions paralyzed by standards he would never achieve.
What did he want to say? I’m sure it was something the world should not wait to hear. My exposure to American Sign Language prompted me to suggest it as a possible language for the family to learn, yet he was adamantly discouraged from using any gestures. Would his parents ever listen to him with their eyes? I left with little hope.
I am an outsider, an observer, to the family dynamics that exist when a child is born with physical or mental limitations. It is perhaps that lack of intense involvement and emotional trepidation that frees me to view these children from another perspective. I can clearly see the need to provide them with an opportunity to achieve, not a mark set by parental expectation or social standards, but a sense of self-esteem attained through the realization of their true potential.
Many programs have been established to include what we call “special needs” students in the mainstream of our cultural norms, with a label that implies that they are limited within that context. Attempts to educate from a textbook concept are often self-defeating and frustrating for a student who demonstrates focus and capacity for perhaps only a single interest.
I have witnessed extraordinary abilities, yet undeveloped, within this population. If these gifts were nurtured by appropriate and committed individuals, they would exceed the definition of “limited.”
I’m aware that parents work lovingly to enhance the sense of belonging, yet a longing for self-understanding exists for these children, as indeed it does for all of us. We know our children. We know what they go to every day for joy. We watch them gravitate to the beat of a drum, draw endless designs of an abstract reality, or care for a pet with undivided attention. I witnessed a 16-year-old girl, brain damaged from birth, who was unable to write her name, yet when exposed to music did not miss a single beat with her movement to it.
Is the classic childhood flying dream not sufficient evidence that children perceive no limits? Why should we place them in a system that allows educators to treat them as though they are potentially limited?
As parents, we are busy with survival, often leaving little time to explore alternative educational methods. Exposure to the reality of our cultural standards is necessary for a child’s development of independent living skills; but we also need to expose ourselves to the creative reality that exists for the child. We can offer our support and encouragement by participating with our children in the magic of self-discovery. Personal achievement is triumph and growth. What extends from our hearts is the gift of freedom–the rightful possibility for everyone.
Doro Hepe is a teacher’s aide in a special education classroom, where she works with students with Down Syndrome and autism. She often incorporates American Sign Language in her work as an alternative form of communication. She is a mother and a grandmother and currently lives in the Santa Cruz Mountains of California.