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.
"When I participated in Leadership, my daughter was only three years old and in a self-contained preschool program. Leadership was my first serious lesson in "Standing Up For What Is Right 101". I gained confidence in my ability to be an advocate for my daughter, acquired knowledge about what all the possibilities are for people with disabilities, and made the friends I need for support. Following my Leadership experience, we advocated for our daughter to be placed in a typical preschool program, and she was! At the middle school level, we had to advocate for our daughter to be placed in the general curriculum program and be graded like her peers, and she was! Marika is in high school now, working toward a scholastic diploma, despite the many challenges she faces because of cerebral palsy. Although she uses a wheelchair for mobility and augmentative communication devices, she will enroll in the Driver's Education program in the fall. This summer, Marika has been interviewing for a part-time job in the health services field. In 1998, after facing several years of discriminatory practices in a Girl Scout troop and being flat-out rejected from another troop because of her disability, Marika filed a lawsuit against Girl Scouts of America (diversityingirlscouts.com).
Marika is indeed unique and special, but not special in the way people would traditionally envision a "special child". She is special because she has been a leader and teacher to hundreds of people. She is special because she is surprisingly brave and determined. And, she is special to us because she is our daughter. Leadership showed me how to stand up for her rights and teach her to stand up for herself. Her education, social life, and community experiences have all been positively influenced by what I learned in Leadership."
Ryan is a young man entering into adulthood who has brought about many changes in his life this year. He graduated with his class from Concord High School in June. Although he is nonverbal, he was able to participate in all regular education classes with the assistance of a qualified aide and by using facilitated communication. Like many other recent graduates, he is taking a semester off to enjoy community activities before beginning college classes after the first of the year.
When our youngest son returned home from an extended hospital stay brought on by viral encephalitis, we expected him to resume his participation in his community, which included school. However, we encountered barriers at every turn.
In September of 1994, I was accepted into the NH Leadership Series. This Series gave us the tools and information needed to develop and implement our vision that has continued to grow in possibilities over the years. Ryan is a now young man who is entering into adulthood. This year has brought about many changes in his life.
In June he graduated with his class from Concord High School. Although he is nonverbal, he was able to participate in all regular education classes with the assistance of a qualified aide and by using facilitated communication. Like many other recent graduates, he is taking a semester off to spend enjoying community activities before beginning college classes after the first of the new year.
Ryan's years in public school could be trying at times, but the rewards far outweigh the problems we encountered. From the moment he reentered the school system after his illness, his friends and classmates were at his side. Many of these children remain his friends to this day. Had we home schooled Ryan, or permitted him to be placed out of district, these connections could not have been developed. Perhaps one of our proudest moments as parents was watching Ryan receive his diploma and hear the number of students cheering him on.
The Institute on Disability's New Hampshire Leadership Series showed us how to maintain our vision for Ryan when many around us were only interested in describing the many things Ryan couldn't do, or the things he would never experience.
Yes, the yellow bus no longer stops at our house, but Ryan is looking forward to college classes and starting to discuss possible career options. He knows that there will be challenges ahead, but he's committed to showing others that anything is possible with a little support from family and friends.
The Leadership Series also expanded my vision for myself. I learned the importance of being involved at the local, state, and national level if real systemic change is going to happen. I am a member of our local school board, on the NH School Board Association Board of Directors, and numerous other committees and task forces. I am currently the Director of CAUSE (Communities Actively United for Social Equality) and continue to be involved in issues at the state and national level.
According to Jeff Williamson, we should "treat a person as a treasure first and forget what is not possible." This was not always the case for Jeff. Until age 19, he attended a segregated program and lived in an eight-person group home. He was miserable, according to Janet - Jeff's mother. "He could only use his body language to communicate and he clearly hated where he was living and how he was being educated. Jeff was not given choices about any aspect of his life because it was assumed that he was incapable of making decisions." Janet wished there were other options for Jeff and she wished the bureaucratic tangle of funding sources gave them both choices.
In 1988, Janet attended the first New Hampshire Leadership Series sponsored by the Institute on Disability. Today, following ongoing training and support from the Institute and others, Jeff's life is filled with the experiences typical of most 30-year-olds: memories of his school graduation and recent vacations, a growing bank account, a resume of volunteer and employment experiences, application information for the local college, bulletins from his place of worship, a home of his own, and friends of his choosing.
Jeff hires the people who provide his support. He defines his life based on his dreams. Jeff has a voice and his words are being listened to. Jeff and Janet are working to make sure that the innovative supports and service delivery system they experience are available to all people with disabilities. The Institute on Disability is proud to be part of the movement toward inclusion, community supports, and consumer-directed services.
