More Alike Than Different

There are so many good things happening for people with special needs this summer! The National Down Syndrome Congress held its convention in Florida at Disney World. There's a great "We're More Alike Than Different" campaign happening, full of stories of how people with special needs are impressing the world around them. I loved the photo of Anthony Shriver (nephew of John F. Kennedy) lifting up a competing swimmer at Camp Shriver in Boston to congratulate him in winning.~~~Our son, Jeff would have loved all this activity. He began attending Special Olympics Events when he was little. Their Oath said, "Let me win. But if I cannot win, let me be brave in the attempt." Here is an excerpt from "Journey With Jeff; Inspiration for Caregivers of People with Special Needs," titled, "Courage! Sharing! Joy!"~~~"Good morning, God!" The chaplain, Jeff's dad, asked God's blessing on the day as the bright, warming May sky welcomed the Special Olympic games. Our excitement for Jeff and the other participants was brimming over. Jeff's teachers plus several of the families of his classmates were eager to cheer on every athlete's endeavor to succeed. Special Olympics began for Jeff in the spring of 1970 in Dunkirk, when he was almost 9 years old. I am eternally thankful to Eunice Kennedy Shriver, who started a day camp with her husband, Sargent, in their backyard in the early 1960s. This day camp for individuals included her sister Rose, who was developmentally disabled with mental retardation, and it launched the way for Special Olympics in the United States and around the world. Our opening parade in the city of Jamestown began forming with the mayor and our state senator at the head. A Sousa march burst forth from the loudspeaker, accompanying the athletes around the track, and their excited waves fired our applause. Then the sight that continues to thrill me every time I see it -- a runner lighting the Olympic torch. Let the games begin! The cheers from parents, teachers, aides and clasmates were deafening! At the end of the event each athlete received a special hug, among much cheering and applause. People in charge made sure all players were rewarded. In the 1970s everyone received a ribbon, even if it was simply for taking part. Now it was Jeff's turn for the softball throw. "You go, Jeff!" He earned a red ribbon -- second prize! "Yay! That's great, Jeff! Come get your hug!" (My prayer at the end of that day was, "Hallelujah! What a day! All that courage and sharing and joy! You enjoyed it, too, didn't You, Jesus?"

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!!

Adopted Children with Down Syndrome

"The cover of your book about your son, Jeff has his picture on it when he was one or two, doesn't it?" asked the sales clerk when I checked on its progress at Alpha and Omega. "No, Jeff was four in that picture. He has Down Syndrome." The man's manner brightened immediately. "We have a lady who works in here who adopted two children with Down Syndrome, a girl and boy only four months apart. She wanted them to grow up together. She has six other children who do not have Down Syndrome. This is one special lady!!" He was enthusiastic to tell me he had invited them out to his home where they could ride horses, which they thoroughly enjoy. "I love to have them around. There are lots of smiles and hugs, and there is no pretending with them -- they are right up front!" We concluded that the love that children with Down syndrome give is an unconditional love. I remember Jeff often saying to the people in his Lifetime Assistance, Inc. residences "I love you!" Some would say to him, "Ah, Jeff, you say that all the time. You don't mean it." And Jeff would simply reply, "I love you!" and leave it at that. This conversation in the store was a great blessing for me.

Music Eases Special Needs

I don't cry as much anymore remembering Jeff's death, but I cried today. We celebrated the life of my friend's daughter, Kathy who died after four and a half years of battling cancer. People came and came and came, as they did to Jeff's funeral. Music was a big part of Kathy's life. She used to play her guitar for a group of people with special needs at the SEEDS group which met every other week at her church. (Jeff loved going to his SEEDS group!) Her Memorial Service was full of the music she loved, and it comforted us who cried. Kathy's mom and I had served together on a Lutheran Women's Board years ago, and mutual thoughts of losing a child were felt in our moment of clasped hands on the way to communion. The music at Kathy's Memorial service eased our own special needs as caregivers, as well. Thank You, loving God! (Photo is of Jeff enjoying "making his own music.")

Movin' On (Conclusion)

Sometimes I even forgot about Jeff...a thought of him would surprise me as I passed his old room. Guilt! Guilt! How could I forget my own child? I had to ask God to forgive me for trying to be "Super Mom!" I was acting as if I should be able to handle this major change in our lives with no trouble at all! My own free time was filling up with new activities. Now I could be on the Lutheran Church Women's Board. I went to a counselor for help with this major change in our lives. She said I was like a kid let loose in a candy store -- I wanted it all -- now! After four months at MDC, Jeff moved into the Lettington Drive Residence. More caring people continued moving in and out of our lives, surprising us with their capabilities and availability. Jeff tested the staff as they encouraged his independence. He didn't want to do all that work around his house. He wanted to play his records up in his room. "I want to come home, Mom." I shook my head, choked up. The final time he asked, he said, "I want to go home, Mom...Tough?" Where had he heard that response? From me? From the staff? Lifetime Assistance Inc (LAI) opened a Residence in Brockport. Five years ago in August Jeff became part of the family of ten. Now he was closer to home! People in Jeff's residence go out to so many activities together! They go to the Ice-Capades, circuses, magic shows, games, movies, parties, picnics, out to dinner...I'm jealous! Several people come to the Seeds Group from the LAI Residence. We get to see Jeff there at least twice a month. And he and I share a whole week at Camp Joy. We have him home for a few days at holiday times. The staff help him get to our church several Sunday mornings. We see him at LAI parties and picnics and games. It's good to have him come home, and it's good to see him go. We stay on top of things with the staff -- ask questions, help out. We're a team...with a fierce detrmination for Jeff. Leaving home is hard all the way around...But it's pure joy to see how much these young men CAN do in God's world. Just watch, my fellow-parents! You'll see!~~~ (Journey With Jeff: Inspiration for Caregivers of People with Special Needsis available on Amazon.com. Note their descriptions and reviews.)

Aha Moments

Talk about inspiration! Mike from Mutual of Omaha, the 'official sponsor of the aha moment,' responded to my July 3rd blog, "Music, Music, Music." He said he really enjoyed this great post. "I have always marveled at the connection kids have with music, and special needs kids are no exception!" he said. "I thought you might enjoy this video in which Jack tells a story about helping a special needs boy sing a song in a talent show. They BOTH got alot out of it: ahamoment.com/pg/moments/view/203." Jack says, "I'll never forget that kid. He changed my life." As a professional musician, Jack had been hired for the summer to play piano in the great parlor of a summer resort. This ten year old boy hung out there listening to him play the piano. One day he asked Jack if he knew 'A Little Help From My Friends" from the Beatles. He played it and the boy sang it perfectly, then asked if he could be in the weekly talent show. They checked it out with his parents, who were very hesitant and afraid for him. Jack told them, "You know, he'll be with me. I think he'll be able to do it." Jack continues, "The night of the talent show, he gets up there and he knocks it out of the park. There wasn't a dry eye in the house." This joyful moment inspired Jack to look into another career. He earned his Master's in psychology and social work, working with kids. Aha moments ~~~ such wonderful serindipity!