Caregiver's Reviews

 
Amazon.com Reviews such as the following will be included in my second book, "Ripple Effect: Responses to Journey With Jeff." If you have read Journey With Jeff I invite a response from you! Was it helpful to you? Would you recommend it to any caregivers you know?~~~ A friend wrote for Amazon.com: "I read this book cover to cover in a very short time. Sybil writes in a manner that makes it so that you can't wait to see what happens next. I was continually awed by the amazing faith she and Bob showed through out their time with Jeff. From the reluctant acceptance that their son Jeff had a problem through dealing with medical people where some showed an 'holier than thou' attitude to those that were a tremendous help. The book will make you cry, laugh and gnash your teeth in frustration with 'the system.'"~~~ Strongly consider writing a review for Amazon.com, if you are a customer. It will be a good recommendation for others checking it out! Thank you!

Hope With Chanllenges

Journey With Jeff: Inspiration for Caregivers of People with Special Needs should have included the story of my brother's frustration with my stubborn insistance that Jeff didn't have a problem - he was just growing at his own pace. His frustration must have matched that of my friends, Joan and Corrie (see "God Sends Friends" - pp. 23+24) who could see that I didn't want to hear anything to the contrary. I wavered between being energized with Jeff's progress and falling into frusted helplessness. By the time he was 3, I told my friend, Corrie that "Deep down in my bones I know Jeff is developmentally disabled, but I fight it with all that's in me!" The possibility of any blessings from Jeff's problems had never crossed my mind!~~~I wonder how many of my readers have had trouble getting to the place of letting go and letting God be God, and seeing how - in all things - God works for good!

Busting Sterotypes

Su Rinas Leone remembers being a little girl when Jeff was 15, and some of the older boys calling
him, "Retard! Retard!" She continues, "Jeff seemed confused and shamed at the same time. His head ducked down and he looked at them laughing. He wanted to laugh, too! But he knew they weren't being nice. Those Big Jerks! I don't remember what I said, but I remember being MAD!" I believe Su saw him as being more like other children than different.~~~Laughter -- Good or Bad?~~~ Can it be good when we laugh about disabilities? I discovered the website: familyvillage.wisc.edu where Judy Bently from State University of NY talks about jokes that make us laugh, then rethink our own assumptions and sterotypes about unexamined issues. There are cartoons called "dizABLED" with the hero, LEEDER O. MEN whose real-life twin, Aaron "Wheelz" Fotheringham, is featured in videos. He has spinabifida, but that doesn't slow him down. Aaron has made his wheelchair into a fun toy, combining half-pipe Bmx and skateboarding into "Hardcore Sitting." The dizABLED cartoons reflect some of the things Aaron CAN do with his wheelchair. AMAZING!! Check it out!!

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!

Music! Music! Music!

Jeff loved music!! He knew all the instruments AND their sounds, so we went to many high school concerts. At weddings and other parties, Jeff mimed playing the instruments, especially the drums. Often he was invited to play drums during intermissions by warm, kind-hearted musicians. He'd put his whole self into the music! If the FLAME Band from Upstate NY had been in existance 20 years ago, I'm positive Jeff and the whole group would have been friends!! The band is made up of people with developmental/physical disabilities, including autism, Down syndrome, mental retardation and blindness. People of all ages and backgrounds connect with this talented band. The feedback they get from parents of children with disabilities is probably the most overwhelming. Parents are often overcome with emotion watching FLAME. FLAME gives them hope that their child can achieve great things and, even more importantly, have a fun, fulfilling life. Their song list contains over 100 classic hit rock, country and blues songs from the past five decades. Their bios and schedule and some videos may be found on www.flametheband.com/ Watch out! You'll be blown away by their website!!

Encouragement From Family

As John Paul blew out the candles on his 40th birthday cake, guests from California to New Jersey, from Colorado to North Carolina were there to help him celebrate. His girlfriend Dama's mother was there, after buying a copy of Journey With Jeff at the earlier Middleburgh library presentation. His sister, Heather (presenting the cake) is home from school in San Francisco for a month, and setting up a Study Tour plan for Art students such as herself (see her website link, Heathers Art.com on this blog.) She also helped me technically so you, my readers can add comments, your hits will be counted, and my Calender is available. Richard from New Jersey, John Paul's brother's namesake, was there with entertaining stories. His wife, Roberta works as a receptionist in a doctor's office. She told me enthusiastically she would spread the word that Journey With Jeff is available on Amazon.com. to the caregivers of those with special needs who come into the office. Thank you, Roberta!! At this celebration I met cousins I'd never met before, or hadn't seen for years. This weekend was truly a fantastic, friendly, family feast!