Why do we need another group?
We had what I call a real community.
On January 12, 2013 that changed. I changed. The Down syndrome community changed too. It changed because one of our own, Ethan Saylor, was killed. To me, Ethan was not just another adult with Down syndrome. He was the beloved son of the mother who introduced me to this community. He was my son’s childhood friend. He was only two weeks older than my Joshua.
My Wish List
- I want a place where we can share our stories and someone will say “I get it.”
- I want a place where we can voice our opinions and hear other perspectives without judgment.
- I want to create a type of social history that records the different experiences of parents whose children belong to the first generation of mainstreamed students.
- I want a resource that focuses on issues that are important to parents and caregivers who are past the age when schooling is the main concern.
- I want to learn what I need to know, as the caregiver of an adult, to help my son be happy and healthy as he ages.
- I want a strong voice to speak up for our generation when things happen that affect the Down syndrome community (i.e. legislation, advocacy, current events).
- I want a place where parents of younger children can come for advice, understanding, and inspiration.
- I want an alliance of parents, caregivers, and self-advocates that providers, legislators, and the “outside world” can come to for input BEFORE they make decisions that will affect our lives.
- I want someone to keep an eye on the national and international news and share important stories in one, easy to access place.
- I want a place where our children don’t have to be cute, overly-friendly, or exceptional for us to feel welcome and successful as parents.
- I want a place where siblings and other caregivers feel as valued as parents.
The list continues to grow and has a life of its own, but those are the basics. I was lucky enough to find two moms (Karen & Mardra) of adults that I came to admire, not because they shared the same views that I did, but because they were always respectful, especially when they disagreed. I shared my wish list with them and found that they wanted the same things.