Samuel's Story

We have two children, and our vision for them is the same: We hope they will enjoy a lifelong enthusiasm for learning, have strong relationships with family and friends, experience success in school, and, someday, have the ability to earn a living doing fulfilling work and, if they so choose find, we hope they will find a loving partner and have children of their own.

Our younger son Samuel was still a baby when we learned the reason he wasn't developing according to the charts in the baby books: a diagnosis of cerebral palsy, apparently caused by an underlying metabolic disorder. Learning this didn't change the way we felt about him, of course. It didn't even change our vision for him.

What this diagnosis did change was our ability to imagine how Samuel could ever become what we hoped for him. How can a child who needs help with everything from walking to holding a pencil succeed in school? How can a child who may never talk make friends? How can a child who will probably always need the support of a trained person ever be independent of his parents? The problem was that we couldn't imagine how to fulfill this vision.

Participating in the Leadership Series (Betsy in 2002 and Dan in 2003) helped us figure out the "how-to's" of Samuel's life. We met a teenager who communicates using facilitated communication, and learned that it IS possible for someone who can't talk to express thoughts both profound and funny. We met adults with significant cerebral palsy who live independently and have fulfilling careers, personal relationships and great marriages. We met other parents who've helped their children to succeed in their local public school, have meaningful friendships, and be involved in extra-curricular activities.

We also learned that none of this is easy and that we will be called upon often to advocate for Samuel. The Leadership Series taught us great advocacy skills that we have already employed.

Samuel is fully integrated into a preschool program, the same one his older brother attended. He'll be fully integrated into the school system and we expect him to be able to pursue the many interests he is already demonstrating.

Samuel's diagnosis has not changed who he is, his value as a person, or how much we love him. But it has changed his experience in the world. Through the Leadership Series we gained the knowledge and skills to support Samuel in fulfilling our vision for his life. And when he's old enough, we'll support him in his own vision for his life.