Parents as Advocates

 
These three women and I joined together in the mid-sixties to create an Association for Retarded Children. (In later years it became the Association for Retarded Citzens.) Each of us had a child with special needs, and we became aggressive advocates in order to learn everything we could to help them become all they were capable of being. In Massachusetts at this time, Eunice Kennedy Schriver and her husband had begun a Day Camp in their backyard for their daughter Rosemary and other children with special needs. This evolved into Special Olympics, which has grown into International Special Olympics today. When we moved to the Rochester area in 1976, ARC was already here. BOCES (Board of Cooperational Educational Services) continued to help Jeff with his learning. By the time Jeff was ready to move on, LAI (Lifetime Assistance, Inc.) had programs and residences ready to help. For the nine or ten years that Jeff was blessed by these services, I served on the LAI Board, whose programs and residences have extended to a total of 40. Several other Associations are also in the area. Now that professionals begin working with children with Down syndrome much earlier than we'd been able to when we began ARC in Port Jervis, NY., these students are graduating from school and even taking college courses! We've come a long way, Baby! YES!!

Keeping A Sense of Humor

When Jeff was little he created this hat for his daddy out of the innards of a box he found. He made us laugh heartedly -- as he made something out of nothing! Part of bringing up a child who lived with Down Syndrome demanded that we keep a sense of humor. (That has helped a great deal these past weeks as I attempt to get my computor working again after the chirps and clicks in the tower indicated the end of my hard drive.)~~~Meanwhile, "Journey With Jeff"continues to make ripples in the lives of readers of Jeff's story. One of the women in our Lutheran congregation is a nurse who's going back to school to advance her degree. Her family of teens and pre-teens with all their activities create an awesome schedule! She says, "Journey With Jeff"has great short chapters that I could read, and put down, then pick up again without forgetting what I'd read. I really enjoyed that book!"~~~A fellow-writer at a new group I've started attending followed up a meeting with a message to me on Facebook. She wrote: "I just finished reading the book about your son and very much enjoyed it. I like that you didn't glorify what happened -- you were very honest about your feelings and experiences, good and bad. Thank you for writing about your son." And,I thank you for YOUR encouraging words!