A Good Gift for Caregivers

Our Pastor Mike is an inspiring and encouraging teacher to us members who are at various places in our spiritual journeys. He tells me I give him support in his teaching students with special needs. We're having a wonderful time with a forty-plus student who asks question after question about how things she learned in her Confirmation class apply to her life now. Pastor Mike read, "Journey With Jeff; Inspiration for /Caregivers of People with Special Needs" as a devotional book -- one chapter a day, laughing at Jeff's antics and sympathizing with his problems. "Didn't know your book could teach me how to teach, did you?" he grinned. I am delighted and very honored. Thanks, Pastor Mike!

Inspiration and Encouragement

Inspiration and encouragement for writers was flowing at the Liftbrige Authors Extravaganza on Sunday! I spoke for about three minutes about how Jeff Reisch has journeyed from NY to CA, from GA to TX, from AK to PA in "Journey With Jeff; Inspiration for Caregivers of People with Special Needs," and how the responses from readers have been like ripples from a pebble tossed into the sea. Afterward a friend who used to wait on us at Perkins Family Restaurant when all our family -- including Jeff -- ate there, said he was jumping up and down when he recognized me at the mike. He then introduced me to his friend who will lead a marketing seminar for published authors in January -- which really interests me! Small world!~~~ Later that afternoon I met one of the women who works at Lifetime Assistance Inc., who again told me how much "Journey With Jeff" had helped her see how families handled the challenges of children with special needs. "Indeed," she said,"the book was better than a seminar!"~~~That afternoon was an inspiration and encouragement for me, the caregiver!!

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.)

"Journey With Jeff" Goes Home with Caregivers

Three women, all caregivers, bought a copy of "Journey With Jeff" at the Women's Prayer Retreat this past weekend. Amy is a psychologist in Ohio, and plans to share Jeff's story with another friend who also came from Ohio. Martha and Karen are caregivers in special education with children with special needs. They shared the challenge of helping a child become all he or she is capable of being. Mary, a single mother, returning to the retreat this year, told me the book she bought last February had helped her in the caregiving of her own self as well as of her children. Pastor Mary Anne and I lead the retreat, choosing "The Shack" for discussion with our 28 women. Many of us have been through a "Great Sadness," and learned how much a relationship with God gives us inspiration, encouragement and hope. We caregivers are not alone!!

Merry Christmas to My Readers!!

One day I visited our Brockport Library to check out the number of times their copy of "Journey With Jeff" had been borrowed, and found 8 due dates listed! Yay!!!! Maybe someday soon I shall be able to check out the six other town libraries where "Journey" lives?~~~The day before Christmas I received an e-mail from a mother who wrote: " I recently borrowed your book from the library, and I have started reading it. I am finding it fascinating and very uplifting, and I can relate because years ago we found out our daughter was profoundly deaf. As I read your book, I keep thinking of other people I would like to recommend it to. I tried to purchase it today at Borders but they said it was out of print. Is there a way to still order it?" Immediately, and with great joy I e-mailed her back: "If you live in Brockport you can buy "Journey With Jeff" at Liftbridge Book Store, or Salvation Station. If you live in Greece, you can order it from Barnes & Noble. You can also order it from Amazon.com, or, I can send you a copy. The cost in the stores, and at Amazon.com is $17.95. Covering shipping and handling, I can send an autographed copy to you for $20.00~~Whatever's best for you and for the other people to whom you'd like to recommend it." And of course, I invited her to take a look at my blog at this website. (Photo is the author with the CD of "Journey With Jeff,"which entered the Brockport Library about a year before the book edition.)

Cherish Our Children

Found myself rooming with two Special Education teachers at our Lutheran Women's annual convention, a mother and her daughter. This young daughter, Lee Anne, and another first timer shared with me a great deal of their work with people with special needs. Lee Anne had trouble sleeping in a strange place the first night, so she took "Journey With Jeff" with her to sit and read in the light near the elevators. She said she couldn't put it down, and to my delight, she memorized many of the stories! The other first timer, Kim, now works with people with emotional and behavior problems. She said several times that her favorite people to work with are those with Down syndrome. She also bought a copy of "Journey With Jeff," and complimented me with the words, "You are my mentor." Three books went home with new friends, and three more with long-time friends. It was a blessed weekend in many ways!

Ernie & Wendy ~ Then & Now

The LAI clients were enjoying the upbeat music at the 30th Anniversary, and Ernie and Wendy, Bob and I were enjoying their enjoyment. I said to Wendy, "Boy, Jeff would sure love being out there on the dance floor!" "O yes," she said, "He'd be in heaven!" We laughed when I said, "He is in heaven!" We remember how much fun he had at other LAI celebrations!~~~ The first paragraph of the chapter titled, "Ernie and Wendy" in "Journey With Jeff " explains that "Ernie Haywood was part of the administrative staff at LAI, and his wife, Wendy, was on Jeff's residence staff on South Avenue in Brockport. They were such good friends of Jeff's that they asked him to be their special guest at their wedding. Ernie complains good-naturedly to this day, "Jeffrey got the first dance with my wife.!"~~~ Ernie and Wendy have given so much of themselves to LAI residents. There is more in the book about being "Surprised at Wendy's Farm," where the residents went one hot July 4th to visit the new baby horse. Wendy's dad gave Jeff a gift that he couldn't quite believe he had in his hand. Read about it in "Journey With Jeff: Inspiration for Caregivers of People with Special Needs," on page 291.

The New "R" Word

In spite of the media spin saying the new movie, "Tropic Thunder" is a movie-within-a-movie making fun of self-absorbed actors, it begins with "Once upon a time there was a retard..." The actor who has played, "Simple Jack - a dim-witted farmer" in a movie is criticized by another action hero for playing him with every typical understanding (misunderstanding) of people with developmental disabilities. "You never go full retard!" he shouts. The National Down Syndrome Congress is concerned that this new movie will result in bullying of children with special needs. One of the most unfortunate consequences of the movies is the distribution of merchandise displaying offensive lines like, "Never go full retarded" on clothing and other items. Tim Shriver, chairman of the Special Olympics said, "I'd like people not to see it. I'd like kids with special needs going back to school in the fall to not have to deal with other kids saying, "Are you a full retard?" Those who use the label to describe someone do not know the power of their words, or the level of their own ignorance. ~~~It's all about Respect -- an "R" word I can live with.

Travel Challenges with Kids with Special Needs

 
There were three young adults with special needs that I noticed in the airport on my way to and from Tulsa, OK, in July. Two were sitting quietly on the floor, or in a special chair. The young man on my flight was sitting with his mom, grandma, and two siblings in front of the huge tarmac window. "No!" he'd shout out now and again. Every so often his mom would say, "You need to stop that," and he did for a while. "I'm sorry you don't feel well," she said -- he refused any food she offered him. His family appeared to ignore him most of the time. When we boarded the plane, he and his mom sat across the isle from us. He continued to moan, and make nervous noises and gestures. One of the teenagers in front of me made a remark that prompted his seat-mate to say, "Stop it!" After the plane finally took off, he leaned his head on his mother's shoulder and arm, and went to sleep until we were back on the ground. When we were waiting to deplane, I said to him, "You did a good job!" and he grinned. "Yes, didn't he!" said his mom, "Thank you!" ~~~This experience reminded me of the time 12-year-old Jeff and his sister, Jennifer (7) and I flew to Colorado to visit a friend. Jeff was very nervous, and was nauseous when we landed. Jen made no indication she was having a hard time, too. Being the sibling of someone with special needs carries a special challenge of its own. (Photo of Reisch family visiting)

Chemotherapy and "Journey With Jeff"

Donna writes from Kentucky: "A short while ago, I received a phone call from the man who is the chaplain at the hospital. Remember, I told you I had loaned him your book? He was amazed at the honesty and emotion of the book. Not just the stories in there, but that you were able to convey them with such a fine balance of professionalism, personal expression, humility and intestinal fortitude. Seasoned authors often are unable to pull that off. Your faith shone through the pages. The chaplain's name is Kerry, and he needs prayer. He has been diagnosed with and is being treated for colon cancer. That's when he finally was able to read your book --during chemotherapy! This precious child of God enjoys the interaction involved in what he was chosen to do. He still "tends his sheep" about five days a week, and whenever he can be there when he's needed. Kerry requires one day a week for recovery from the chemo sessions. He knows that whatever happens will be part of God's plan and to His glory. He gratefully and humbly accepts the love shown by any and all prayers offered on his behalf, knowing that prayer changes things. If you can get this kind man on a prayer chain, please do so. God bless you and yours."

Mom shares success stories from her son's journey, by Mark Hare

"Jeff Reisch was 18 months old when an ear, nose and throat specialist asked his parents, 'Did it ever occur to you that he might be retarded?' That was 1962, and Down syndrome was not widely recognized. John F. Kennedy was in his second year in the White House. It would be six years before the president's sister, Eunice Shriver, would found the Special Olympics. 'We didn't know anything about it,' says Sybil Reisch, Jeff's mom. 'He had a rough start,' she says. He was not able to assimilate food--he couldn't convert food to tissue. That question from the doctor opened their eyes, and changed their lives, and sent Sybil back to school to take courses that would help her care for Jeff. She completed a master's degree in special education and worked 23 years as a special education teacher in Greece before retiring in 2000. Caring for Jeff in their Hamlin home (they've since moved to Brockport) was a big job. But Sybil, her husband Bob, and Jeff's younger sister Jennifer always had great support and help from doctors, from friends, from members of their church--Concordia Lutheran in Kendall, Orleans County, from BOCES and from Lifetime Assistance, an agency that provides housing and programs for persons with special needs. Two things helped them be successful; Their religious faith and their eagerness to focus on the positive. Sybil remembers hearing often the list of things Jeff would never be able to do. 'I decided to write down all the things he can do.' She kept a journal for nearly 30 years, and last year published a book--Journey with Jeff--filled with accounts of those special moments, of the times when he did things well. 'It's for the caregivers,' she says. 'I really feel for people who have a child who may not be able to get out into the world. How long with he live? What will they do?' Journey is a collection of one-or two-page vignettes, little bite-sized tales of tiny breakthroughs that mean so much. When Jeff got a job assembling booklets at Lifetime Assistance, Sybil recalls, 'there was a group there that he could always calm down. It made me feel good to see how he impacted them.' Sybil loves the story called 'Big Bird's Car,' about the time Jeff decided to help Lance, a counselor at the South Avenue Lifetime Assistance home where Jeff lived as a young adult. An hour or so after Lance came to work, Jeff found him and proudly proclaimed, 'Big Bird, I helped you!' Jeff had washed Lance's turquoise Datsun--the outside and the inside. When they opened the doors, water flowed out as if a dam had broken.' It was a mess. But Lance didn't yell; he used it as a 'teaching moment,' Sybil says, to explain that we clean the interior of a car with a vacuum, not a hose. 'I was so grateful to Lance for that,' she says. There were many joyful moments; the day Jeff walked after being hospitalized 22 months with a hip problem. The ABC books he loved to read over and over. The day he learned to ride a bike. The bittersweet moemories of the day Jeff left his parents for the independence of a group home. Those are the times Sybil Reisch likes to focus on. 'My faith started to bloom when I stopped saying, 'Why us Lord? When the scholar is ready, the teacher will come.' Jeff's journey ended in 1988, when he died at 27. But his story lives, as a bright candle in a dark night of uncertainty and worrry for families like the Reisches." The book costs $14.99, plus $1.20 in tax, as well as shipping and handling.