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!

Journey With Jeff in Hometown Library

This weekend has been full of inspiration, encouragement, family and friends! Since one of my
High School classmates knew I'd be in Middleburgh, NY, for my
nephew John Paul's 40th birthday, he arranged a presentation of Journey with Jeff at my hometown library. Usually 8 - 15 people attend the library presentations. There were 12 who came this time -- schoolmates (some with spouses,) cousins, teachers and librarians. As I shared how I came to write Jeff's story, and our joys and challenges along the way, I read three vignettes: "Welcome To Holland," which helps people stop mourning what they wish their child could have become, but open their arms to the trip to come; "Movin' On" which includes many of the events and emotions of Jeff moving from home; and "Big Bird's Car," my favorite story, and one which causes much laughter.~~~Six people bought a copy of Journey With Jeff, and a few shared their own stories. One woman bought a copy for her sister whose daughter has severe Cerebral Palsy. I learned that a young man in his 30's was there, along with his parents, who is slowly deteriorating, and the doctors can do nothing about it. They seem to be handling it bravely. I left a book for the Middleburgh Library shelves as well. I hope the people will Read It, Review It, and Pass It On!

"Journey With Jeff" on Google Alert

About seven blogs ago I wrote of Michelle, who had lost four babies by miscarriage. When she was expecting again, tests showed the possibility of having a child with Down syndrome. The doctor asked if she wanted to abort, and she said, "No way!" Her son is a fine, flourishing four-year-old today. The tests were wrong! ~~~Here is another story, quite the opposite. Patricia Bauer writes in her blog about an Oregon couple who seeks $14 million in a "wrongful birth" lawsuit. This is to cover the cost of raising their 2-year-old daughter born with Down syndrome, providing education, medical care, and speech and physical therapy. Deborah and Ariel Levy said they would have gotten an abortion if they had known their daughter would have the condition. They said they were given incorrect information , and their lives were changed because of it. There were many responses to this article: Keri says, "Some people expect their children (and other people's children) to be born perfect and to stay that way." The NWDSA is concerned with the tyranny of perfection at the heart of this. Two readers say," Just think what this is saying to their two older children..."We love you both so much (just like we love your little sister) but if you had a birth defect (or maybe if you develop a problem) we'd wish that you'd never been born." Chris says, "Since the Levy's don't want their burdensome daughter, I'll take her!" Keri continues, "I get such joy from my daughter, and I couldn't imagine her any other way. She's an amazing individual and I know that she will go far in life. Anyone who doesn't think so needs to get out of her way!" I love that last statement! What enthusiasm and encouragement! It's an acceptance of their daughter, and her incredible potential to be all that God created her to be!

Encouragement For Friends

Sue's my long-time friend who says that "Journey With Jeff" helped her to let go and let God bring good out of the birth of Christine, her still-born baby. Sue believes that Christine has angel wings which helps her know her baby lives in God's presence, and which gives her a peace beyond understanding. She thoroughly enjoys creating angels from lace and ribbon, feathers and pipe-cleaners, and distributing them to people who need the encouragement these symbols give. "I have a ministry ," she says, "of making angels for people who are struggling in their lives. They tell me these angels make a difference in their lives every time they see them."~~~Sue tells me,"Your 'Journey With Jeff' has just begun to be a success! People read it and lives are changed! You and I in our ministries are blessed when they tell us about it!! " Amen!