The Parade

several people site in lawn chairs and watch a parade go by.

Picture in your mind a lush, green common in the middle of a small country town. A family strolls along peacefully enjoying the quiet, the calm, the gentleness. They come upon a beautiful gazebo and step inside. Suddenly, the peace and stillness are broken. Bright lights, blaring music, and confusion rush in and the family is caught in the middle of chaos. To their surprise, they’ve just become the grand marshals in a parade they never planned on attending.

Off in the distance, the parade begins. The marchers include many of the people who will be involved for the next twenty years with the family and their child with a disability. The band arrives first, brimming with medical specialists all decked out in their uniforms. In the front is the brass section with pediatricians, an endocrinologist, a pulmonologist, as well as the emergency room doctors and nurses. Next comes the percussion section with many orthopedists, neurologists, opthalmologists, and others. They are trying so hard to keep the beat, but they sometimes hear the sound of a different drummer. They pass by the grand marshals, nod, and then move on.

Following closely behind are teams representing each year of the child’s life. The first is the early intervention program with many people weaving in and out of formation—therapists, teachers, and nurses. Some are wonderfully matched with the family and are in sync with the music; others have trouble keeping in step. Many more teams pass by—one for every year in preschool, elementary, middle, and high school. Some of the marchers play on the team for a year or two. Others remain for a decade. All in all, more than 100 paraders march past! Each one differs in formation and what music they should play. Each leaves an individual offering—ideas, papers, goals, and objectives—at the feet of the grand marshals and then moves on.

Next come the cheering supporters from the side of the road. From lab technicians to state consultants; from family support staff; to pharmacists and the cafeteria woman who blends the hot lunch; the bus driver and custodian—the numbers swell. They shout and offer information as they pass the grand marshals; some even march along with the parade for awhile.

Finally, the beautiful antique cars, all polished and shiny arrive. Riding graciously in each car is a wonderful and talented person who has made a real difference in the lives of this family. There is the therapist who knows just what to do and say, and skillfully earns the family’s trust and respect; the social worker who is the link between the family and several teams, and who knows when to call, when to visit, and when to have a real heart to heart; the doctor who sometimes has difficult issues to discuss but talks with kindness and honesty, and who gives hopeful words at a time when no one else does; the consultants who push and challenge to create change and acceptance in our world and beyond; and finally, the classroom teacher and inclusion facilitator whose flexibility and bright spirits make everything happen so easily at school. These are tremendously knowledgeable and sensitive people who create relationships based on truth, hopefulness, and a willingness to work together to create a world where each belong. They are not afraid of becoming authentic partners with the family.

The grand marshals realize that they have their work cut out as they strive to:

• pull information together from the many marchers and determine what is really essential for their family

• stay open to new ideas, information, and challenges • stretch themselves into new and sometimes uncomfortable territory if it helps them reach their dreams of being fully welcomed, included, and supported

• stay strong as a family in spite of pulls and pushes on their time, energy, and spirits.

As they peer down the road, the family discovers more music, new marchers, and different parades on the way. The marchers in the distance are shapeless and formless, and the family sometimes worries about those shadowy figures of the future. They hope they have the strength, the knowledge, and the vision to direct the parades of the future…and the ongoing support of those wonderful people in the antique cars who have encouraged and supported a vision of a world where all families are welcomed and supported in their local schools, general education classrooms, and communities – every step of the way.

-Ann Dillon

Photo of blog author.Since Ann’s career began as an occupational therapist, she has enjoyed supporting young children, their families and providers and working to provide supports and services that are family-centered. Her interests in inclusive education, autism, developmental disabilities, and leadership have been fueled by these connections and passions. Ensuring NH has a strong Leadership program, increasing the use of person-centered planning, organizing and designing responsive supports and systems, and pre-service and continuing education are personal priorities. Through the IOD, Ann is the Coordinator of the NH Leadership Series. She also coordinates off-site clinical placements for the NH LEND program and is their CORE Family Faculty member, and she supports the GEMSS project through NEGC. She has worked with many community, state, country and governmental agencies in the areas of systems change, medical home, positive behavioral supports, family-centered care, autism and developmental disabilities. She has recently traveled to Belarus to teach parents and professionals about inclusive education and supporting parents through the International Child Fund project. Ann is a registered and licensed Occupational Therapist (OTR/L) with the National Board for Certification in Occupational Therapy and the State of New Hampshire. As the parent of a wonderful daughter who had disabilities and who is now deceased, Ann applies her parenting experience to the Institute’s work in education, inclusion, medical and family support.