10 Reviews of "Journey With Jeff" on Amazon.com

I have been looking for Reni Hy's review on Amazon.com since she promised me at the Lutheran convention to write it. Earlier, another friend had been told that since she hadn't purchased anything from Amazon.com, her review couldn't be accepted. "Quick!" I e-mailed Reni, "buy something! (Only kidding!)" She laughed by e-mail and said, "I will do that in a heartbeat, if I can. I'm excited to contribute in anyway to help the sale of this book." And,...today it is on Amazon.com -- the 10th Review! Reni's heading surprised me: "A must read for High School students enrolled in Parenting Classes or those interested in working with children." She continues, "This book is a great instructional tool on the psychology of a family expecting a baby and finding after the baby is born, that the child has Down syndrome. Well written, heart rending, it leaves one with the experience of what an average family travels through with Downs the same way one experiences Nazi Germany through the eyes of Anne Frank. I highly recommend the book to all. Everyone will benefit from it." ~~~If you, Dear Reader, can recommend "Journey With Jeff," let the world know through Amazon.com!!! Thank you!!!

Caregivers at Passavant ~~150 Years Ago

I met Dolores Fruth at my presentation of "Journey With Jeff" at the Passavant Retirement Community in Zelienople, PA in May. I was impressed with her 25 year history of working at a Home in Rochester, PA for the care of epileptic and mentally retarded adults. Passavant Memorial Home and the Retirement Community were named after a great man who in the 1800's went about establishing churches, children's homes, hospital, colleges and seminaries. ~~~When Dolores' husband, Bill was called as the Administrator and Pastor of the facility, there were almost 100 residents -- at a time when there was little or no support from the government. They relied upon churches in that area to help support the Home. The Fruths lived with the residents on the grounds and felt that they were their family. Dolores said it was a long hard struggle for 25 years, working and praying and trying to improve their family's lot in life. This is Dolores' first poem after moving to Passavant~~~~
WHAT IS A MOTHER?
Ninety people call me "Mom." I don't know how I rate.
Their ages go to 84 And I'm just 48.
I plan their meals and buy the clothes, Take care of many needs.
We play and work together now, So caring is a breeze.
The family here at Passavant Has taught me how to share
My mother instincts with the ones who now are in our care.
God give me strength to do the best As we live with each other,
To earn the name they place on me, That I am truly "MOTHER!"
~~~How good it is to learn how well the people with special needs were cared for in this Home!! (Photo is of Dolores Fruth and the author in Passavant Retirement Community auditorium.)

The Down Syndrome News

The Down Syndrome News is the monthly newsletter of the National Down Syndrome Congress.
Lately the issues are full of stories about people with Down syndrome written by people with Down Syndrome. The writer's ages range from 16 - 40. The 16 year old is a drummer who wrote a Game Review of "Guitar Hero" for the Mentor High School newspaper, with some help from his siblings.~~~A 21 year old boy described a plane ride where the flight attendants announced to everyone on the plane that it was his birthday and sang to him. They made a roll of toilet paper into a birthday cake with pretend candles, making it "a real special day!"~~~A Louisiana Self-Advocate earned his Eagle Scout rank and 2 Eagle palms in 1992, and has been active as an assistant Scoutmaster for 16 years. He's also happy working at his church as a custodian three days a week.~~~A 38 year old woman wrote a newspaper piece titled, "I Really Want Them to Treat Me Nice." She says, "Part of my dream is to be independent and help people. I like living by myself. I can make my own decisions and not be told when to do the laundry, when to clean, when to go to my room. I know I have Down syndrome. That's a disability, so I need help. I'm not perfect. I know I am not like others, but I really want them to treat me nice."~~~On the Heading of these news stories, the word 'Down' in Down syndrome is crossed out, and 'Up' is written instead. They are truly Self-Advocates!! (Photo is of Jeff in his hero outfit, with his friends.)

Caregivers at Convention

Caregivers are found everywhere! The fellow who typed my message on powerpoint about "Journey With Jeff" for a repetition cycle throughout our intermissions during our Synod Lutheran Conventionthis week said his wife and daughter are involved with programs for people with special needs. His daughter will be helping out at Camp Joy this summer. They also are caring for his mother -- in a "Sandwich Generation" situation. I autographed his copy of "Journey of Jeff" to his whole family of caregivers.~~~During a breakfast conversation with Joan, a new friend, she asked me about my children. I told her how Jeff lived with Down Syndrome and Jen was a National Honor Society member, a huge difference on the spectrum. In order to help Jeff develop and become all he was capable of being, I earned my masters in special education. Joan's mother is involved with people with special needs, too, and while she was growing up there was a young woman in their family who had Down Syndrome. Her mother came down with Multiple Sclorosis, and the young woman cared for her until she died. Then she cared for her aging father until he died. What an interesting switch in the role of caregiving! God is full of surprises!

Encouraged By Other Caregivers

It's like a Sisterhood; caregivers being encouraged by other caregivers! Two years ago I wrote Emily Perl Kingsley asking her permission to use "Welcome To Holland" in "Journey With Jeff'; Inspiration for Caregivers of People with Special Needs." She wrote, pleased to give her permission and asking me questions about Jeff. She told me her son Jason, who also lives with Down Syndrome, has written a book called, "Count Us In: Growing Up with Down Syndrome." I have read this encouraging book about two high-functioning young men. They remind me of Corky in the "Life Goes On" TV series in the 1990's. Wish that well-written program was still airing! ~~~ Just finished a book my favorite son-in-law found for me, "The Year My Son and I Were Born," by Kathryn Lynard Soper. I identified with many of her experiences, such as our babies' noisy breathing -- it led us to an Ear/Nose/Throat Specialist who asked if we'd ever thought Jeff could be retarded! Our world blew apart! Soper's comment, "He's slow, slow, slow. So what?!?" compared with our great pediatician's "So what!? Record everything Jeff CAN do in the back of his Photo Album." This became the beginning of my book about Jeff. When I see a child with Down Syndrome now, I think of the woman in Soper's book whose baby died at 5 years of age. Whenever she saw another child with Down Syndrome she cried, "His face, his face. It's been so long." Tears came when I read this ~~~ I wrote Kathryn Soper of my enjoyment of her memoir. She wrote back, "I appreciate you taking the time to contact me -- like you, my greatest reward is hearing from readers and fellow travelers." From one caregiver to another!

Jeff's "I love you!"

Joy! Pure joy! That is what I sensed in Michelle as she told me about her youngest child. After she had miscarried four babies, and was pregnant once more, tests showed that there was a possibility of the baby having Down Syndrome. "Do you want to abort?" the doctor asked her. "No! No way!" she said, "I've waited a long time for this baby!" She carried her son full term, and when he was born, he was fine. He is four years old today, and being a very "normal" child. "What if I had aborted?" she reflected. "This beautiful son of mine would never have been born!"~~~I read that 90% of pregnancies which predict a child with Down Syndrome are aborted! 90%! Many families who want to adopt a child with special needs find there are not many available. Please spread the word that if a mother-to-be cannot handle the possibility of a baby with difficulties, she should deliver this precious child, and offer it for adoption! So many people will be blessed!

Special Needs Children Responding to Special Needs Children

Gathering up our things after my presentation in the Passavant Retirement Community auditorium, an older man with special needs came through the door.
"What are you doing?" he asked. My brother-in-law, Dutch gave him a flyer from one of the seats and explained that we had just heard about this young man called Jeff. Dutch showed him the six posters of Jeff's life hanging at the front of the room, and the man seemed excited to match the photo in his hand with the ones on the posters. "I'm John," he said, and pointed enthusiastically to Jeff then to himself, back and forth, back and forth, until I understood that he wanted me to introduce them. So I said, "John, this is Jeff. Jeff, this is John." He grinned a wide, "Hello!" Then he thanked me. Thus, Jeff has made another friend!