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!

Community Caregivers

There's a house on the other side of our back fence, where several people with special needs live. It reminds me of the Residences Jeff lived in for the nine years after he "Moved On" from home, at age 18. A woman is sweeping the porch. A man is enjoying the backyard swing. Yesterday several people were painting their side of our fence. There is always something going on! A family of residents and the Lifetime Assistance Inc. staff are enjoying the sunshine together, as well as dealing with someone who vies for attention by roaring like a lion. (Which sounds like something Jeff might have done, too!!!) I'd like to wiggle my nose and create a Gate I could walk through, and remind them again of Jeff and friends who used to gather for the Seeds group at a local church.~~~Maybe it's a Time-Gate I'm looking for as I remember the great times which we also enjoyed with Jeff's old friends?! (Photo is a view of the house from my backyard, at dusk on a cold night.)

Smiles for Caregiving Memories

 
"Jessica?" At her grandfather's funeral today years tumbled over one another as the young woman and the golden-haired toddler she was carrying traded places and Jessica was again the baby in the story, "Jeff's Sense of Humor," in Journey With Jeff.Jeff was a teenager then, just shy of a year since moving from home to live in a Residence for people with special needs. "There's a baby next door," I told Jeff during his four-day Easter vistit at home. "Want to go and meet Jessica?" "Baby, Mom?" he asked. "Next door?" "Yes, Sue B. invited us over to see her granddaughter. Can you say, Jessica?" After a few attempts, we decided to shorten it to 'Jess.' Sue introduced Jeff to four-month-old Jessica, who was alert and smiling at everyone, including him. "Cute!" he said to Sue, pointing at the baby. In a few minutes he left the stool beside Jessica to have the cup of hot chocolate Sue offered him. The baby began to fuss so her mother gave her a pacifier. Jeff grinned! "Look Mom, a mute!" A mute? Then I burst out laughing and had to explain. "You know how Jeff loves all the instruments, and how a mute goes into a trumpet or trombone to soften the music? This, then, is a baby's mute!" Everyone laughed at Jeff's joke, so he repeated it over again and again with a very wide grin, "Yeah, Mom, a mute!"~~~I hadn't seen Jessica for about five years. We hugged, and she mentioned the comparison between today and years ago. Sue B., her grandmother, has the CD "Journey With Jeff," but not the book. So, as I left the family's home later that afternoon the people were looking thru the pages to find the story about Jessica. Thank You, Lord, for good memories and warm reunions!

Brenda and John~~Caregivers

When I found Brenda on my Facebook page, I was delighted because she and her husband, John have long been important caregivers in our family's lives. They took particularly good care of Jeff when he was part of the Lifetime Assistance world for nine years, at his residence and in his work program. Then,(captured in the above photo) when Jeff was in the hospital for the last three weeks of his life, they often visited, listened to the joy of his music with him, and made him laugh. Brenda and John still pop up every so often in our lives. I asked Brenda what she remembered about Jeff. She wrote these details: "Mitch Miller, drums, walks; his love for everyone; so many special memories. He had a smile that lit up the night. He is thought of often, and always with a smile. Thank you for sharing him with the rest of the world." We were blessed by so many people!

Caregivers for Special Needs People

 
Before Jeff was born, caregiving was going on for children with Down syndrome in this upstate NY home. I visited with my friend, Joan when we were studying to be teachers at OSUNY near-by. Because Joan was familiar with Downs children, she knew Jeff had Down syndrome long before the E.N.T. doctor suggested it to Bob and me. Now, more than 50 years later, this home has become a Village -- of NINE homes. Lois Ennis has been a caregiver here for 21 years. After reading "Journey With Jeff; Inspiration for Caregivers for People with Special Needs," Lois writes: "In reading this book, I learned that Jeffrey was a very loving person. He brought joy and laughter to everyone he came in contact with, and they all loved him. Yes, there were very difficult times, but God pulled everybody through it." She continues, "I take care of children and adults, ages 10 - 69, with Down syndrome. I always remember that they depend on me and I need patience during a tough situation, but at the end of the day, the joys outweigh everything else. I'm so glad Jeffrey had his family, friends and music throughout his life, and so many programs to help him. This book was amazing, and a learning experience for anyone who will be connected somehow with special needs people. God bless Sybil and her family."~~~God truly HAS blessed our family with the stories of widening circles from the pebble of Jeff's life. Thank You, Lord!

Inspiration For and From Readers

It wonders me how many people have read the 565 copies of "Journey With Jeff" which are in a dozen libraries, or in their own library, and who have passed it on! One of my friends at church bought a copy, declared it "Fantastic!" and told her daughter, who is a nurse, "You have got to read this!" Her busy daughter made it a point to tell me, "I like the format, because the chapters are short. This makes it easy to read, put down, and pick up again."~~~The young music teacher who wrote the Forward to "Journey With Jeff" exclaimed, "The book really has taken on a life of its own, hasn't it?!?" She sometimes quotes a tidbit or two to the parents of her special needs students, hoping they will want to pick it up and read more.~~~One of the young neighbors we met when we first moved to Hamlin, NY, in 1976, is now a policeman. He saw the book in the library, recognized my name, and when he saw my husband at the library, he made a point of telling him he had read it. I am anxious to get in touch with him to hear his response to the story of Jeff, who was just about his age when we were neighbors. Yes, "Journey With Jeff" seems to have taken on a life of its own! It's pretty exciting, and I relish every single response from my readers!!