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!!

Family Support from "Journey With Jeff"

 
Most responses to "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"are from those who are caregivers of children with special needs. But, tonight I was surprised by a phone conversation with a member of our family, Dutch, who just lost his wife (my husband's sister)about three weeks ago. In his Pensylvania retirement community, Dutch was invited to be in a play called, "It's Laughter We're After." It will be presented on May 16th, the day before their wedding anniversary, and Dutch said, "Oh no, I don't think I can do that." He didn't feel much like laughing. Dutch has been re-reading "Journey With Jeff," and found himself at the last chapter titled, "And the Beat Goes On." As he put down the book he said, "Well, if Robert and Sybil can continue on, then I can too. Life does go on. And, so will I!" Dutch has a part in the comedy, and also will sing a happy little ditty he sang to Lois on anniversaries that made her laugh. Yes, Jeff's unconditional love and influence continue on! God is full of surprises!

The Joy of Life by Kids with Down Syndrome

 
Can you see and hear, and touch the joy in this photo of Jeff who is being treated to a ride on one of his very favorite things?!? Love of Life is his "shout-out" for the rest of the world to find the holy in the ordinary!~~~About a month ago, Susane Ashline wrote in her Democrat and Chronicle, "Mom's World" column about being at a Disney show at a resort. The staff was rounding up kids who would briefly go on stage later that night. While waiting for her own 5 year-old son's turn to practice, Susan became "wrapped up watching a little girl with a sandy blonde mop of hair and baby fat cheeks. She had Down syndrome. More than a dozen kids were practicing bit parts, but she was doing her own thing. When staffers talked to her, she talked to someone else. When the others were walking in line, she was jumping off steps. I wondered how this would play out on stage later. I worried for her. After several scene changes, to the tune of 'Under the Sea,' the girl with Down Syndrome entered stage left with a dozen other resort children; but she blew on like a tiny cyclone. She grabbed onto the adult actor playing Sebastian the Crab. I tensed. The other girls walked in a circle around the Little Mermaid, but the girl with Down syndrome jumped on the prop carrying the mermaid, and the actress' expression turned anxious. Just as quickly, the girl jumped off and went twirling around the mermaid, not in circles, but in her own designs, flapping arms and kicking legs. She spun around the floor, landing with her toes dangling precariously off the edge of the stage, teetered for one breathless moment, and then was off to a fast-rhythm, pounding beat, spinning and fluttering, twirling and floating; hypnotic, oblivious, carefree. She brought down the house -- 600 hands together in thunderous applause, and shouting and whistling. She wasn't the most graceful little girl on stage, but she was the most beautiful -- uninhibited, blissful. And the music rang out:'We got the spirit; you got to hear it, under the sea.'" Susan Ashline caught that utter joy so many people with Down syndrome display. I thank her for writing this column so others can see that beauty!

Family Support and Encouragement

 
This past weekend bitter mixed with sweet as we celebrated my husband's sister Lois' "Giving Tree" life of 88 years, and as we realized the deep, empty hole now in our close family.~~~Jeff has always been welcomed in this huge family. The pebble of his 27 years on this earth, tossed into this family, has caused ripples in people's lives resulting in careers in special education for at least three or four members, and in several volunteer's hours. Caitlyn is in her Junior year in college, ready to do her Student Teaching in classes of students with special needs. Her nine year-old sister has Down syndrome and has been integrated into a third grade class. We're so pleased...amazed at her progress!~~~Our nephew, Mark has been working with people with developmental disabilities for many years. There are more and more discoveries of things the members of our family are doing with people with special needs. The folks in the photo above are only about half of the family who gathered for Lois' funeral. More are scattered around the country, with a number of them involved as caregivers of people with special needs. We're so proud of them!!

Caregivers in Batavia, NY

There were several caregivers in the audience when I made my presentation of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"at the GO ARTS! evening program. Some had heard the broadcast on WBTA the previous Thursday with Joe Langen and me inviting everyone to come.~~~Some of the caregivers were both mothers and special education teachers. I was moved by their tears of empathy as I told the story of going from "Why us, Lord?!" when we discovered Jeff had Down syndrome, to "Where do we go from here?" then examples of all the people God sent to help during the years Jeff was growing up.~~~There were great comments and questions, such as, "How did your husband respond to Jeff's special needs?" (He believed his job was to be breadwinner, and that my mother's wisdom would get us through -- that was the way families operated in the 60's and 70's -- although he was very supportive in helping whenever I asked.) "How did your daughter, Jennifer handle the teasing, and the extra time spent with Jeff's special needs?" (She told them, "He's my brother!" because that's just the way it was, and she became very independent.) We talked about GUILT, and I read an excerpt titled, "Movin' On," a letter I'd written to other parents who were considering a Residence for their son. This covered guilt pretty well. Joe Langen suggested that I ask Jennifer how I could spend more time with her NOW. YES! That's a great idea, Joe!~~~By evening's end, a number of listeners had bought copies of "Journey With Jeff," plus the CDs of Jeff's story. One man told me he bought the CD so he could hear it again. "I have learning disabilities," he said, "but if I can hear things again I can absorb it, and once I have it, I don't lose it." I'm so glad Jeff and I could touch his life, plus some other lives. It was a wonderful evening with wonderful caregivers!!