By: Stephanie Holland
A friend, family member, and citizen. A young man who was taken from us too soon. A laugh that was infectious. A legacy of devotion and change.
Recent laws, results of the efforts of tireless advocates, that have changed the world as we know it for children and adults who have Down syndrome. (Thanks to Joe Meares for putting the timeline together)
For some, changes in laws and attitudes have resulted in increased inclusion and greater opportunities. Battles had to be waged, but the results were fabulous!
Despite progress in some areas, without major societal changes, those who have been included in K-12 education often face exclusion and limited opportunities as adults.
New prenatal testing procedures make it easier to detect Down syndrome before birth. Unless and until fair and balanced information is available with those tests, these statistics will continue and/or get worse. For adults who have Down syndrome, these statistics make the world less accepting of those who are already here.
Abuse and neglect have plagued our community and have been discovered in many settings that were supposed to support people with disabilities. Landmark court decisions were necessary to facilitate change. With those decisions comes fear and a race to eliminate the possibility of recurrence. Those of us with adult children have experienced the results of poor planning and inadequate resources for unfunded mandates in the name of progress. As the nation and the world look for solutions to current abuses in the 'sheltered workshop' environment, we hope everyone remembers that there are real lives being affected with every decision.
The link between Down syndrome and Alzheimer's disease is real and threatens the very health and memories of those we love.
Those of us on "The Road" have lived through a time of great change. We've advocated for our loved ones to the best of our ability. Now we've come together to face the challenges, questions, and JOY of adulthood. We remember the past, our own and those who came before us, and we move "forward with hope" toward a brighter future that comes with community.
Ethan Saylor was the first grandchild for Bob and Dottie Saylor. He had a special relationship with Grandma and Nanny (as he called Granddad). Ethan spent a lot of time with them and Thursday nights were always Ethan nights. His Mom or one of his caretakers would drop him off at their house and he would eat dinner with them. Some of his favorites were pizza, rice and brownies. He spent a lot of time at the head of the table, usually going through one of him many notebooks, or playing cards or board games. Ethan loved to sneak food when he thought no one was looking. Grandma often found Hershey Kiss wrappers hidden throughout the house after he went home. Ethan loved to sing and play his harmonica. On cold days, he could often be found sitting on the front porch on the glider playing his harmonica and singing at the top of his lungs. Most of the time you had to listen carefully to understand what he was singing… one of his favorites was “Amazing Grace”.
This is my nephew Ethan Saylor. I had the honor of being his aunt for 26 years before he died tragically in January 2013.
I spent a lot of time with Ethan when he was younger. I have so many great memories of Ethan when he was little... we use to go for car rides and listen to the Men in Black song by Will Smith. He loved it, and the louder, the better! He also liked going the the airport and watching the small planes take off.
When my husband and I adopted our daughter, Macy and Ethan immediately formed a special bond that was just as strong as the bond Ethan and I had.
E is Ethan, but E is also for everlasting...
This kind of love....