Ethan's Feeling Switch: Introduction

This story is a mother's attempt to describe what causes some children to learn and behave differently from other children. By using a simple analogy young children can comprehend, it introduces the notion of what causes some disabilities without mysterious or complicated words. Rather than focus on a specific "disability,"; it focuses on those qualities which make a child unique. The story is about Ethan, a little boy who enjoys the things in life other children do, until his body and brain begins to change and he loses the ability to talk and move the way he used to. But the one thing that remains constant in his life is the joy of friendship and sharing.

Ethan was diagnosed with Hunter Syndrome (Mucopolysaccharidoses - Type II), a degenerative and terminal storage disorder, when he was four and a half years old. Although the diagnosis explained the cause of his hyperactivity, developmental delays, and his tendency to repeat phrases and questions, it also presented us with the emotional challenge of accepting the fact that our son would not grow up like other children. I found myself struggling with that reality, and not prepared to help other children understand or accept Ethan for the energetic and loving child he was.

Ethan was in Special Education classes for three years, preschool and first grade equivalents. He had such a quality of exuberance and, as one child told me, imagination, that he did enjoy several friendships beyond his classroom. But there were still children who snickered as they passed us in the park, "There's that retarded kid." I wanted to grab them and explain, "No, he is so much more than that!" When the fourth school year rolled around, the school district moved Ethan to a different school. It was important to find a way to introduce him to the students in a way they could understand; to speak for my son at a time when he could no longer speak for himself.

My hope is, for families who have children with MPS, this story will help them be better prepared than I was to help other children get to know their children before the disorder advances, to move beyond the despair of the diagnosis to the joy and love our children have to offer.

~Jude Oberst~

Cover | Epilogue | Hunter Links
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