Journey With Jeff; Inspiration for Caregivers of People with Special Needs

Your Garden is Doing Fine, Jeff

2011-10-08T12:56:00.000-04:00

Purple -- Jeff's favorite color!! The purple mums in our garden, and the purple bouquets on the altar Sunday morning joyfully celebrate Jeff's life among all of us. I've just finished reading, "The Garden Is Doing Fine," by Carol Farley, in which a young teen is fighting to let her dying father go. It's late fall and her dad wants to know how his garden is doing. She wants to be honest and tell him there is no garden any more now. When two painfully honest neighbors tell her that her father will be remembered for his caring long after he has died, she realizes that she is his garden, and the seeds he has planted in her will go on season after season. At the end, she can say, "Your garden is doing fine, Dad."~~~Jeff's garden is doing fine. He has planted his love, and the love of God in many hearts along the way. Jeff's life, and his going to be with Jesus in the beautiful month of October, will be celebrated with an awesome, thankful purple hue!!

Camp Joy and Beyond

2011-09-29T10:50:00.000-04:00

Sometimes a book will wait for a reader for many months, or, beckon one back. It will wait for it's own time. I'm thinking of the woman at the "Celebrating 30 Years of Camp Joy" Banquet this weekend. After the dinner was over, she came up to me to say she had just finished "Journey With Jeff; Inspiration for Caregivers of People with Special Needs ," and liked it very much. Her husband had brought it back to her from a synod-wide Lutheran meeting a couple of Junes ago. (I thought he looked familiar!)~~~Today a note came from a pastor friend who, a few years ago, had helped me decide the title of Jeff's book. He said, "I have been re-reading 'Journey With Jeff.' I was just thinking that if I was teaching pastoral counseling or clinical pastoral eduction it would be required reading. It's a wonderful book." ~~~Having this book be required reading in a college course would be ideal!!!~~~And, back at the Camp Joy Banquet, a woman read her poem about Camp Joy being a pool and the staff the ripples on the pool. Afterward, I mentioned to her that I was planning on sharing how Jeff's life had a ripple effect on the people in the pools around him. She asked where to find "Journey With Jeff" so she could read it for herself. (see Liftbridge Book Store in Brockport, NY, or Amazon.com.) The photo is Jeff enjoying his tube at Camp Joy.

Advocates for Jeff and Friends

2011-09-28T10:59:00.000-04:00

Today I'm wearing a tee-shirt with the words, "Celebrating 30 Years of Camp Joy" emblazoned on the left shoulder. In 1981, Joan Van De Wall and I wrote a grant for a week of Faith-based Camp for people with special needs like Jeff who had aged out of other summer camps. How he loved Camp Joy!! At the Banquet Celebration of these 30 years of growth, and struggles, and blessings, Joan asked the 2011 Camp Joy Staff to share some of their stories of healing and blessings they'd experienced this year. The staff shared story after story of how they'd gained more from the campers than they'd given. Joan ended her thank-yous to all those who had served on the Camp Joy staff over the years by asking me to speak about Jeff's last days with Leukemia at the hospital. Since she had been there, too, she recalled that Jeff had been adamant about going back to his group house, even with a possibility of hospice care. Finally, "Yes, Mom!! Go back to Group Home!!" melded into, "Yes, Mom, I'm ready to go and see Jesus now." ~~~ Jeff has been gone 23 years in Ocotober. I haven't cried in a long time, but I cried at that Banquet. Thank You, Lord, for the people who cared so much for Jeff, and helped him be ready to go to see You!!

2011-09-27T15:10:00.000-04:00

Surprise Advocates!

2011-09-17T19:50:00.002-04:00

"Please bring a copy of Journey With Jeff to the gathering for me to purchase for my daughter," wrote a far-away friend in an e-mail. Claudia and her daughter, who was visiting from North Carolina, gathered with the state-wide Lutheran Women at the Notre Dame Retreat Center in Canandaigua last weekend. When I handed her a copy of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs," her daughter said a friend of hers also might want a copy. As Claudia purchased a second book she said, "I keep my copy on my coffee table in the living room, where people pick it up and ask about it." Here was another illustration of my friend Lynne's exclamation that "Journey With Jeff" has a life of its very own!" How wonderful to find Surprise Advocates!!

The Power of Words

2011-08-18T11:18:00.000-04:00

Jeff's Aunt Lois had been matriarch of the Reisch family for many years. Her husband, Jeff's Uncle Dutch, called her the "perfect pastor's wife." They made a good team. Last Easter Aunt Lois went to be with the Lord - and with Jeff - and Uncle Dutch felt utterly lost. He wrote, "I read, 'Journey With Jeff' again - what a blessing!! Those last chapters saved my life....I could have become a hermit! But, I'm involved now in my retirement community, and there's so much going on I can hardly get lonely. I preach almost every Sunday. I sing in the Communtiy Chorus and in the Barbershop Quartet." There's not much Jeff's Uncle Dutch isn't involved in at his retirement community in Zelienople, PA.~~~Dutch's reponse alone is a good reason to have written the book!

Inspiration for Advocates

2011-08-14T18:09:00.000-04:00

"Hello Sybil, You probably don't remember me, but I felt compelled to reach out to you." Thus began a letter from a gal who identified herself as someone who had worked at the South Avenue group home for Lifetime Assistance while Jeff lived there. "Jeff left an indelible mark on my heart and I have always thought of him with great joy. He could teach the world a lot about loving life! I was trying to find Marge, one of the staff I worked with, so I typed in LAI, and found a Newsletter with an article about Jeff on the front page. I knew instantly who Jeff Reisch was and began to cry with happy memories. I remember how Jeff used to call Marge "Mudge," and how he used to talk about 'Mitch Miller!' and play his air instruments. I loved Jeff and missed him after I moved back home. It was a difficult time in my life. In Hindsight, I realize now that those days at South Ave. were an instrumental part of my growth. Thank you for sharing Jeff with us. He was an inspiration and a treasured gift from God. God bless you and your family."~~~ How I relish these notes filled with memories of Jeff!

Inspiration from Journey With Jeff

2011-08-13T11:00:00.000-04:00

"This is for you," Alan said one Sunday morning. He handed me a long stem of beautiful blooms of sweet-smelling lillies. "I finished reading 'Journey With Jeff,'" he said, "and thought you ought to have this." He added that he wasn't sure if this was appropriate, but I quickly replied, "How could it be any more appropriate!?" Alan told me a friend of his in Hawaii had a 53 year-old daughter with Down syndrome, and this friend had heard of 'Journey With Jeff.' "YOU HAVE TO READ IT!" Alan told him emphatically. I love receiving endorsements like this!!!
~~ Alan has been with our church family about a year now, finding small ways to be of help and encouragement, from shoveling snow to singing in the choir. He has begun attending our Friday morning 'Seriously Funny Bible Study,' where our discussions are punctuated by stories of God's grace. The short stories in 'Journey With Jeff' often have become illustrations, such as my refusal to accept the doctor's diagnosis of Jeff's retardation when he was a year and a half old. When I stopped demanding, "Why us, Lord?" and began asking, "Where do we go from here?" then we began to see God's grace working in the people God sent to help us. (God's grace also can be found in an extraordinarily beautiful stem of blooming lillies!)

A Caregiver Revitalized and Reinvigorated

2010-09-29T20:16:00.000-04:00

It was just the right medicine this caregiver needed! The Fire Captain manning the serving table for a community dinner of barbecued chicken asked me how my book was doing. I wondered how he knew about Journey With Jeff. "The action has slowed down a bit," I replied. "That happens," he sympathized. I pondered the connection we may have had as my husband, Bob and I enjoyed the deliciousness of the meal. When we left, I asked him how he was aware of Jeff's story. "I took your picture at the Barnes & Noble Author's Event last year. Remember the fireman I was phographing all evening, and then he gave you the copy of his poem, "Snowflake"? I asked you that evening how your husband was doing." Yes, I remembered. I had been twice-blessed!!

Caregivers, Take Note!

2010-08-22T18:47:00.000-04:00

All Caregivers~~~plus many who have learned that the baby they are expecting may have special needs~~~please take a look at these words: "My face may be different, but my feelings the same. I laugh and I cry and take pride in my gains. I was sent here among you to teach and to love, as God in the heavens looks down from above. To Him I'm no different, His love knows no bounds; It's those here among you, in cities and towns that judge me by standards that man has imported, but this family I've chosen will help me get started. For I'm one of the children, so special and few, that came here to learn the same lessons as you. That love is acceptance, it must come from the heart. We all have the same purpose, though not the same start. The Lord gave me life to live and embrace, and I'll do it as you do, but at my own pace.-- Unknown author.~~~There are many e-mails, articles and blogs filled with the question about what it's like to have a child with Down syndrome. Comments and responses have spoken of the joy of being loved by one of these children, and of the help from new research and resources. I am deeply thankful that so much is going on these days with children who have special needs!

"Journey With Jeff" under Caregiver's Arm

2010-08-14T13:57:00.000-04:00

"I'm bringing my copy of "Journey With Jeff; Inspiration for Caregivers of People With Special Needs" with me for our stay at Strong Memorial," a caregiver friend told me. She and her husband will be spending a couple of months at this University of Rochester hospital for cancer treatment for her spouse. Yes, caregiving for a child like Jeff may be different from caregiving for a spouse, but my friend believes she'll have the same feelings I wrote about dealing with Jeff being in the hospital. She pointed out the inspiration of the scripture quotes chosen for each of our God-stories. She liked the prayers following, which ranged from utter dismay at downturns in Jeff's health, to thanks for sending the right person at the right time, to exuberant praise when I sensed the holy in the ordinary.~~~My friend and I have not talked for almost five years as one thing after another has challenged her while being caregiver for her spouse. Now, I expect we may have some time together, with me as a "been there" listener and encourager. Perhaps she'll write an "Abba Father" letter or two to God, just as I did at low and high points.~~~O Healer God, put Your arms around this couple. Bless her as a caregiver, and heal her spouse quickly and thoroughly. Grant their doctors and caregivers at Strong much wisdom. Thank You! Amen.

2010-08-05T10:19:00.000-04:00

Jeff and Mitch Miller

2010-08-05T10:15:00.000-04:00

Earlier this week the world learned that Mitch Miller, a caring, charismatic, always smiling musician died at 99 years of age. Jeff enjoyed looking at his record album covers while listening to the "Sing Along With Mitch," popular songs, which came out in the early 1960's. A couple of long-time Lifetime Assistance, Inc. friends (who are sisters) wrote on their Facebook pages, "I bid a sad farewell to Mr. Mitch Miller followed by wonderful memories of an inspirational young man. Thanks, Mitch Miller for letting me think about him today." I replied, "Just a guess that you're thinking about Jeffrey Reisch and his great love of Mitch Miller? Jeff met him at Eastman School of Music in July 1988, when Mitch was here to conduct the Rochester Philharmonic Orchestra. Were you one of the staff who arranged that?" She quickly replied, "No, I was not one of the ones that arranged that meeting. I just remember hearing 'Mitch Miller!' so many times from Jeffrey. Anyone who knew and loved Jeffrey was well aware of his love for Mitch Miller. When I learned he had passed away my first thought was that Jeffrey would be so upset." Dennis Brown, one of the LAI managers who has been with LAI more than 30 years wrote, "Jeff was probably there to welcome him when he crossed over. What I wouldn't give to see that!" Yes, Dennis, that's exactly what I was thinking!!!~~~Another great outcome of these Facebook messages, is that I learned Marla Chefalo was the one who arranged Jeff's meeting with Mitch Miller. She said, "It was so much fun! They were both such good guys! I thought of that when I heard." My thanks to you for good memories because of your special efforts, Marla! The second sister concluded, "It's nice to have such happy memories returned to us. Jeff will forever be remembered with a song in my heart. Thank you for sharing him with the world." YES!!

More Alike Than Different

2010-07-31T12:55:00.005-04:00

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?"

Parents as Advocates

2010-06-26T14:07:00.000-04:00

These three women and I joined together in the mid-sixties to create an Association for Retarded Children. (In later years it became the Association for Retarded Citzens.) Each of us had a child with special needs, and we became aggressive advocates in order to learn everything we could to help them become all they were capable of being. In Massachusetts at this time, Eunice Kennedy Schriver and her husband had begun a Day Camp in their backyard for their daughter Rosemary and other children with special needs. This evolved into Special Olympics, which has grown into International Special Olympics today. When we moved to the Rochester area in 1976, ARC was already here. BOCES (Board of Cooperational Educational Services) continued to help Jeff with his learning. By the time Jeff was ready to move on, LAI (Lifetime Assistance, Inc.) had programs and residences ready to help. For the nine or ten years that Jeff was blessed by these services, I served on the LAI Board, whose programs and residences have extended to a total of 40. Several other Associations are also in the area. Now that professionals begin working with children with Down syndrome much earlier than we'd been able to when we began ARC in Port Jervis, NY., these students are graduating from school and even taking college courses! We've come a long way, Baby! YES!!

Keeping A Sense of Humor

2010-06-13T19:14:00.002-04:00

When Jeff was little he created this hat for his daddy out of the innards of a box he found. He made us laugh heartedly -- as he made something out of nothing! Part of bringing up a child who lived with Down Syndrome demanded that we keep a sense of humor. (That has helped a great deal these past weeks as I attempt to get my computor working again after the chirps and clicks in the tower indicated the end of my hard drive.)~~~Meanwhile, "Journey With Jeff"continues to make ripples in the lives of readers of Jeff's story. One of the women in our Lutheran congregation is a nurse who's going back to school to advance her degree. Her family of teens and pre-teens with all their activities create an awesome schedule! She says, "Journey With Jeff"has great short chapters that I could read, and put down, then pick up again without forgetting what I'd read. I really enjoyed that book!"~~~A fellow-writer at a new group I've started attending followed up a meeting with a message to me on Facebook. She wrote: "I just finished reading the book about your son and very much enjoyed it. I like that you didn't glorify what happened -- you were very honest about your feelings and experiences, good and bad. Thank you for writing about your son." And,I thank you for YOUR encouraging words!

Community Caregivers

2010-05-16T19:20:00.003-04:00

There's a house on the other side of our back fence, where several people with special needs live. It reminds me of the Residences Jeff lived in for the nine years after he "Moved On" from home, at age 18. A woman is sweeping the porch. A man is enjoying the backyard swing. Yesterday several people were painting their side of our fence. There is always something going on! A family of residents and the Lifetime Assistance Inc. staff are enjoying the sunshine together, as well as dealing with someone who vies for attention by roaring like a lion. (Which sounds like something Jeff might have done, too!!!) I'd like to wiggle my nose and create a Gate I could walk through, and remind them again of Jeff and friends who used to gather for the Seeds group at a local church.~~~Maybe it's a Time-Gate I'm looking for as I remember the great times which we also enjoyed with Jeff's old friends?! (Photo is a view of the house from my backyard, at dusk on a cold night.)

Smiles for Caregiving Memories

2010-05-08T21:41:00.000-04:00

"Jessica?" At her grandfather's funeral today years tumbled over one another as the young woman and the golden-haired toddler she was carrying traded places and Jessica was again the baby in the story, "Jeff's Sense of Humor," in Journey With Jeff.Jeff was a teenager then, just shy of a year since moving from home to live in a Residence for people with special needs. "There's a baby next door," I told Jeff during his four-day Easter vistit at home. "Want to go and meet Jessica?" "Baby, Mom?" he asked. "Next door?" "Yes, Sue B. invited us over to see her granddaughter. Can you say, Jessica?" After a few attempts, we decided to shorten it to 'Jess.' Sue introduced Jeff to four-month-old Jessica, who was alert and smiling at everyone, including him. "Cute!" he said to Sue, pointing at the baby. In a few minutes he left the stool beside Jessica to have the cup of hot chocolate Sue offered him. The baby began to fuss so her mother gave her a pacifier. Jeff grinned! "Look Mom, a mute!" A mute? Then I burst out laughing and had to explain. "You know how Jeff loves all the instruments, and how a mute goes into a trumpet or trombone to soften the music? This, then, is a baby's mute!" Everyone laughed at Jeff's joke, so he repeated it over again and again with a very wide grin, "Yeah, Mom, a mute!"~~~I hadn't seen Jessica for about five years. We hugged, and she mentioned the comparison between today and years ago. Sue B., her grandmother, has the CD "Journey With Jeff," but not the book. So, as I left the family's home later that afternoon the people were looking thru the pages to find the story about Jessica. Thank You, Lord, for good memories and warm reunions!

Brenda and John~~Caregivers

2010-05-02T17:46:00.002-04:00

When I found Brenda on my Facebook page, I was delighted because she and her husband, John have long been important caregivers in our family's lives. They took particularly good care of Jeff when he was part of the Lifetime Assistance world for nine years, at his residence and in his work program. Then,(captured in the above photo) when Jeff was in the hospital for the last three weeks of his life, they often visited, listened to the joy of his music with him, and made him laugh. Brenda and John still pop up every so often in our lives. I asked Brenda what she remembered about Jeff. She wrote these details: "Mitch Miller, drums, walks; his love for everyone; so many special memories. He had a smile that lit up the night. He is thought of often, and always with a smile. Thank you for sharing him with the rest of the world." We were blessed by so many people!

Caregivers for Special Needs People

2010-04-28T12:27:00.001-04:00

Before Jeff was born, caregiving was going on for children with Down syndrome in this upstate NY home. I visited with my friend, Joan when we were studying to be teachers at OSUNY near-by. Because Joan was familiar with Downs children, she knew Jeff had Down syndrome long before the E.N.T. doctor suggested it to Bob and me. Now, more than 50 years later, this home has become a Village -- of NINE homes. Lois Ennis has been a caregiver here for 21 years. After reading "Journey With Jeff; Inspiration for Caregivers for People with Special Needs," Lois writes: "In reading this book, I learned that Jeffrey was a very loving person. He brought joy and laughter to everyone he came in contact with, and they all loved him. Yes, there were very difficult times, but God pulled everybody through it." She continues, "I take care of children and adults, ages 10 - 69, with Down syndrome. I always remember that they depend on me and I need patience during a tough situation, but at the end of the day, the joys outweigh everything else. I'm so glad Jeffrey had his family, friends and music throughout his life, and so many programs to help him. This book was amazing, and a learning experience for anyone who will be connected somehow with special needs people. God bless Sybil and her family."~~~God truly HAS blessed our family with the stories of widening circles from the pebble of Jeff's life. Thank You, Lord!

Inspiration For and From Readers

2010-04-25T21:24:00.004-04:00

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!!

Family Support from "Journey With Jeff"

2010-04-18T21:51:00.000-04:00

Most responses to "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"are from those who are caregivers of children with special needs. But, tonight I was surprised by a phone conversation with a member of our family, Dutch, who just lost his wife (my husband's sister)about three weeks ago. In his Pensylvania retirement community, Dutch was invited to be in a play called, "It's Laughter We're After." It will be presented on May 16th, the day before their wedding anniversary, and Dutch said, "Oh no, I don't think I can do that." He didn't feel much like laughing. Dutch has been re-reading "Journey With Jeff," and found himself at the last chapter titled, "And the Beat Goes On." As he put down the book he said, "Well, if Robert and Sybil can continue on, then I can too. Life does go on. And, so will I!" Dutch has a part in the comedy, and also will sing a happy little ditty he sang to Lois on anniversaries that made her laugh. Yes, Jeff's unconditional love and influence continue on! God is full of surprises!

The Joy of Life by Kids with Down Syndrome

2010-04-14T22:00:00.000-04:00

Can you see and hear, and touch the joy in this photo of Jeff who is being treated to a ride on one of his very favorite things?!? Love of Life is his "shout-out" for the rest of the world to find the holy in the ordinary!~~~About a month ago, Susane Ashline wrote in her Democrat and Chronicle, "Mom's World" column about being at a Disney show at a resort. The staff was rounding up kids who would briefly go on stage later that night. While waiting for her own 5 year-old son's turn to practice, Susan became "wrapped up watching a little girl with a sandy blonde mop of hair and baby fat cheeks. She had Down syndrome. More than a dozen kids were practicing bit parts, but she was doing her own thing. When staffers talked to her, she talked to someone else. When the others were walking in line, she was jumping off steps. I wondered how this would play out on stage later. I worried for her. After several scene changes, to the tune of 'Under the Sea,' the girl with Down Syndrome entered stage left with a dozen other resort children; but she blew on like a tiny cyclone. She grabbed onto the adult actor playing Sebastian the Crab. I tensed. The other girls walked in a circle around the Little Mermaid, but the girl with Down syndrome jumped on the prop carrying the mermaid, and the actress' expression turned anxious. Just as quickly, the girl jumped off and went twirling around the mermaid, not in circles, but in her own designs, flapping arms and kicking legs. She spun around the floor, landing with her toes dangling precariously off the edge of the stage, teetered for one breathless moment, and then was off to a fast-rhythm, pounding beat, spinning and fluttering, twirling and floating; hypnotic, oblivious, carefree. She brought down the house -- 600 hands together in thunderous applause, and shouting and whistling. She wasn't the most graceful little girl on stage, but she was the most beautiful -- uninhibited, blissful. And the music rang out:'We got the spirit; you got to hear it, under the sea.'" Susan Ashline caught that utter joy so many people with Down syndrome display. I thank her for writing this column so others can see that beauty!

Family Support and Encouragement

2010-04-06T21:45:00.000-04:00

This past weekend bitter mixed with sweet as we celebrated my husband's sister Lois' "Giving Tree" life of 88 years, and as we realized the deep, empty hole now in our close family.~~~Jeff has always been welcomed in this huge family. The pebble of his 27 years on this earth, tossed into this family, has caused ripples in people's lives resulting in careers in special education for at least three or four members, and in several volunteer's hours. Caitlyn is in her Junior year in college, ready to do her Student Teaching in classes of students with special needs. Her nine year-old sister has Down syndrome and has been integrated into a third grade class. We're so pleased...amazed at her progress!~~~Our nephew, Mark has been working with people with developmental disabilities for many years. There are more and more discoveries of things the members of our family are doing with people with special needs. The folks in the photo above are only about half of the family who gathered for Lois' funeral. More are scattered around the country, with a number of them involved as caregivers of people with special needs. We're so proud of them!!

Caregivers in Batavia, NY

2010-04-01T14:21:00.004-04:00

There were several caregivers in the audience when I made my presentation of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"at the GO ARTS! evening program. Some had heard the broadcast on WBTA the previous Thursday with Joe Langen and me inviting everyone to come.~~~Some of the caregivers were both mothers and special education teachers. I was moved by their tears of empathy as I told the story of going from "Why us, Lord?!" when we discovered Jeff had Down syndrome, to "Where do we go from here?" then examples of all the people God sent to help during the years Jeff was growing up.~~~There were great comments and questions, such as, "How did your husband respond to Jeff's special needs?" (He believed his job was to be breadwinner, and that my mother's wisdom would get us through -- that was the way families operated in the 60's and 70's -- although he was very supportive in helping whenever I asked.) "How did your daughter, Jennifer handle the teasing, and the extra time spent with Jeff's special needs?" (She told them, "He's my brother!" because that's just the way it was, and she became very independent.) We talked about GUILT, and I read an excerpt titled, "Movin' On," a letter I'd written to other parents who were considering a Residence for their son. This covered guilt pretty well. Joe Langen suggested that I ask Jennifer how I could spend more time with her NOW. YES! That's a great idea, Joe!~~~By evening's end, a number of listeners had bought copies of "Journey With Jeff," plus the CDs of Jeff's story. One man told me he bought the CD so he could hear it again. "I have learning disabilities," he said, "but if I can hear things again I can absorb it, and once I have it, I don't lose it." I'm so glad Jeff and I could touch his life, plus some other lives. It was a wonderful evening with wonderful caregivers!!

Community Support at WBTA--Batavia,NY

2010-03-24T12:14:00.004-04:00

Wanda Frank, WBTA Host, was a great encourager as I spoke about "Journey With Jeff; Inspiration for Caregivers of People With Special Needs," this morning. My writer buddy, Joe Langen was there too, to present this as a springboard for the GO ARTS program across the street next Tuesday evening. Wanda asked me about what Jeff was like as he grew (happy, busy, loving music, loving people;)what I said to people who stared or were negative ("Hi, this is Jeff. What's your name?" - he's a regular person;) what helped me as Jeff grew up(patient friends, teachers, and doctors, and reading as much as I could get my hands on;) when I decided to write this book (when a doctor told me "These children never learn to read. They never go to school. They never This. They never That;" and how I wrote the book (by bringing together Jeff's Progress Report I kept in the back of his photo album, and my Journaling when I felt challenged, or full of joy.) In the one minute left to sum up, I said, "I wrote this book to encourage caregivers of people with special needs, including the Sandwich Generation who care for aging parents as well as children. I wrote it so they will never feel as if they are all alone." I hope the people who heard the program on WBTA will want to hear more at the GO ART presentation in Batavia on Tuesday evening!!

Adopted Children with Down Syndrome

2010-03-19T20:36:00.005-04:00

"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

2010-03-17T20:32:00.003-04:00

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.")

Respect for an Inherent Dignity

2010-03-10T20:57:00.003-05:00

At a Lutheran Book Club discussion of "Journey With Jeff," one of the members experienced an "aHa Moment." She wrote, "Your book has made me more accepting of everyone just as God made them!" A new respect for the inborn dignity of all God's children was born! What an accomplishment, AND what a blessing this will be for everyone! She also said she "liked my format and found it easy to read -- each chapter a lesson in itself." She thanked me for putting my feelings "out there where hopefully we can all learn from them."~~~The presiding pastor added, "The discussion went really well. We talked about the style of writing, which we appreciated, especially the letters to God. We could picture Jeff, his struggles, the seizures and surprises, and talked at length about the time period that Jeff was alive. It was a great conversation that flowed well, and I encouraged everyone to send you an e-mail, or a letter, or to friend you on Face Book."~~~YES!~~~What a joy to know that eight Lutheran Book Club members joined together to read and discuss the story of our joys and challenges, and how God has blessed us and so many people through Jeff!

US Representatives Help Kids With Special Needs

2010-03-08T19:55:00.002-05:00

The National Down Syndrome Congress reports that on March 3,2010, the Keeping All Students Safe Act (S.2860) passed the House of Representatives on a 262-153 vote! U.S. Representative Cathy McMorris-Rogers, mother of 3 year old Cole who has Down syndrome stated: "I am genuinely pleased by the House's bipartisan support for the Keeping All Students Safe in Schools Act. This critical piece of legislation confronts the unimaginable situation in schools across the country whereby some of our nation's most vulnerable children are treated in an inhumane and degrading manner. The thousands of incidents reported by the Government Accountability Office and others together with the piecemeal approach taken by the states demonstrates the need for federal guidance. I've been proud to work with many organizations and this is a victory for them. I thank Chairman Miller for his leadership and my colleagues for their support. Together, we work to ensure this bill is passed by the Senate." The focus now turns to the Senate and the intense effort that will be needed to pass the bill. Keep tuned, folks, we need to be aware of how to support, and be effective advocates for our children with special needs. Thank you!

Singing to Grandbabies

2010-02-28T23:14:00.000-05:00

From the moment the tenor grandfather could finally hold his granddaughter, born prematurely at 24 weeks, he sang to her! She struggled with lung, heart and brain issues, and his singing calmed her. Our congregation, and many other people held this baby with special needs in prayer. She lived for 162 days, affecting the lives of many. At her Memorial Service this weekend, her grandfather sang, acappella, "Here I am, Lord." Cheeks were wet. Sniffles were audible. Music is such a special way to communicate!!~~~When my children were small, my mother used her beautiful voice to sing to Jeff and his sister, Jennifer. (See photo.) When Jeff had trouble with his seizures, and said with panicked eyes, "My head moved, Mom!" I remember singing nursery rhymes with him until he quieted down.~~~ When Jennifer's children were born they lived 1000 miles away, and I feared that our grandkids would not know who we were. I read stories on tape for them to listen to in the car as they traveled, singing the rhymes to them, wrapping them in a long-distance hug each time. Singing to grandbabies is a special way to communicate.

Review #11 on Amazon.com From Long-time Friend

2010-02-24T22:00:00.006-05:00

Two differently abled boys grew up together,...one with scoliosis and one with Down syndrome. Jeff's friend wrote about "Journey With Jeff" in the Amazon.com review: "This is an inspirational story about a family that I knew when I was growing up in New York state. Jeff was a friend of mine and was full of love and joy. He was one of the most happy people I have ever met even though he was born with severe challenges. This book chronicles my friend's life, his parents' struggles and joys, and the family's incredibly strong faith as they journeyed with Jeff through his special life. The book is written specifically for inspiration for caregivers of people with special needs, but the story is inspirational for all people. This is one of those books that you keep after you've finished reading and turn to it when life throws you a curve."~~~I was delighted to discover this eleventh review on the Amazon.com page! I invite everyone who has read "Journey With Jeff" to write a review to help others know this encouragement. Thank you!!

Hospital Days With caregivers

2010-02-22T21:43:00.000-05:00

When Jeff was in the hospital his last three weeks with leukemia, many caregivers walked in and out of his room. These included his pastor, the Lifetime Assistance Inc. staff, as well as family, friends and the nurses on his floor. We were deeply blessed with all the people God sent to care for him.~~~Since September 2009, a micro-preemie from our congregation has been surrounded by caregivers at Strong Hospital, with her family sticking very close. She has struggled with heart trouble, bleeding on the brain, difficulty breathing, even some pneumonia. For these past 162 days her mother has kept a daily journal and photo log on a Caring Bridge website, writing from the baby's point of view. (When Jeff was young I wrote his thank you notes and kept Jeff's Progress Record using his voice.)The support of family and friends, and even strangers has added up to about 22,000 hits on her Caring Brige website, with 126 responses to her story. Sunday morning our congregation learned that this precious baby we'd carried in our prayers for five months had gone Home to be with Jesus the night before. Pastor Mike had baptized her while she slept in her mother's arms and then her mom and dad were able to hold her and each other. We are sad that this little girl was on earth for so short a time, but we rejoice that her mom and dad and their family believe she'll be welcomed by her great grandparents waiting for her in Heaven.~~~Seeing Jeff again is our great hope, as well!! (Photo is of Pastor Don Miller visiting Jeff in the hospital, Oct.1988)

"Journey With Jeff" for Caregivers

2010-02-16T18:40:00.004-05:00

My book,"Journey With Jeff; Inspiration for Caregivers of People with Special Needs"has been on the Rochester, NY, communities' Wegman's Store shelves since the middle of November. Four copies were in each of five Wegman's stores, where I checked a couple of times, and was pleased to see only one or two left on their shelves! This week only three books were returned to me, which means 17 are now out in the community, telling caregivers they are not alone! I hope they'll accept the invitation on the last page of "Journey With Jeff," to send their responses to me at my e-mail or snail-mail address. Those responses are such an encouragement to me!!~~~Jeff's special needs were spelled out by Down Syndrome. His friend, Brian, who wrote the response to "Journey" in the previous blog, "A Tribute to My Special Friend," was inspired by Jeff when he had to face experimental treatments and finally spinal fusion surgery for scoliosis as an 11 year old. I asked Brian how he'd learned about the book and he pointed to this blog and/or Amazon.com. "It's one of those books I'll keep," he said, "and, refer back to when I need inspiration."~~~The first lines of a poem by James W. Foley titled, "Drop a Pebble in the Water," suggest how Jeff's story has spread to -- who knows where? "Drop a pebble in the water: just a splash, and it is gone; But there's half-a-hundred ripples circling on and on and on. Spreading, spreading from the center, flowing on out to the sea. And there's no way of telling where the end is going to be." All praise to You, O Lord!!!

One Special Friend's Tribute To Another

2010-02-07T21:11:00.001-05:00

Brian's tribute to his special friend: "When I was young, I had a special friend that I saw almost every Sunday in church. My friend was special in many ways and helped me learn many things that a little boy might only learn from having such a friend. I can't remember when we first met, but I do remember that he was such a regular part of our worship that I could not recall attending church without him being there and missed him when I no longer saw him. He sang the songs, loudly, and just a little bit longer than everyone else. He prayed loudly, and added his 'A-Men' just a little later than everyone else. He was not shy and he was not embarrassed, he was proud to sing and worship and perhaps he made the entire congregation feel loud and proud as well, because that church could sing!~~~We would usually meet after the service and I remember at first feeling awkward when he hugged me, as a young boy sometimes does, but eventually I learned what an amazing greeting and gift these hugs were. His Mom would help him explain his latest accomplishments and helped me understand some of the challenges my friend faced~~~Of course, the friend that I am remembering so fondly is Jeffrey Reisch and what I remember so clearly was how much he loved people and the church. I can't recall most interactions with Jeff, it was about 30 years ago, but I can convey how much of an impact he made on my life. He was so enthusiastic with everything that he did, he was so very proud of his accomplishments, and he genuinely cared for other people.~~~Facing a physical challenge when I was young, I could look to Jeffrey as an example of how to be brave in difficult times and to keep my chin up. Jeffrey's positive outlook and cheerfulness were an inspiration to me as I faced experimental treatments and finally spinal fusion surgery for scoliosis as an 11 year old boy.~~~Although Jeffrey was a part of my early life, his entire story eluded me until I saw that Mrs. Reisch had written "Journey With Jeff."Although I am not a parent of a special needs child, I was compelled to set aside all other reading material to read Jeff's story. The book not only enlightened me to all of the joy and difficulties the Reisch family faced, but gave me inspiration as a parent of two young children. Mrs. Reisch's amazing perspective and faith are an inspiration to parents struggling with raising children and facing any sort of adversity.~~~Jeff truly was an amazing individual and anyone that met him was truly blessed by his spirit. Reading the book brought back memories of the wonderful spirit that Jeff had, and reminded me how lucky I am to have known him. Someday, I hope to be welcomed into the kingdom of heaven where my friend Jeff will greet me with one of his great big hugs!" Me, too, Brian!!! I can hear Jeff now, saying, "Brian's my friend, Mom!!"

Caregivers! Don't Give Up!

2010-02-03T18:46:00.003-05:00

A long-ago friend surprised me with a note about her own care-giving years with her little girl, born in the mid-sixties. "We almost lost her from birth," she wrote. "She couldn't assimilate her food, and would fall asleep as soon as she began nursing. She cried incessantly! Only a goat's milk formula saved the day. She was born with a mal-formed hip, with her little foot smack up against the front of her leg. The pediatrician put her in a brace when she was about toddler-age for night-time use." My friend almost didn't make it through the baby's birth herself, and now she and her husband had to handle this challenge. "I cried my eyes out!" she said. "I had postpartum depression big time! I didn't want my baby! That changed, and I still adore her, and admire her for coming through her own family difficulties."~~~Her conclusion: "So you see we can readily empathize with the trials you write about in 'Journey With Jeff.' There was a time I shut God out. It was a long, lonely time. It is no longer so. I have grown in grace." This is the reason 'Journey With Jeff' was written, so that other caregivers also may have hope and faith, and grace. (Photo is of Jeff at six months.)

Community Inspiration and Encouragement

2010-01-30T17:40:00.002-05:00

Community inspiration and encouragement came early in Jeff's life, interlaced with those who tried to point out that Jeff might have special needs. I did not see it, and I did not want to hear it.~~~Helene and I were young together in our congregation, and she says she remembered me sitting in the back of the church with baby Jeff, and hearing his breathing, and being afraid he would choke. She admired the way I dealt with it, with seemingly calm courage. Actually, for about two years I was in deep denial.~~~Helene's husband, Ed, was a professional photographer. He took photos of Jeff, beginning at three months, through his fourth birthday. What a legacy! His photo of Jeff at four years made the cover of "Journey With Jeff: Inspiration for Caregivers of People With Special Needs."~~~This past Christmas Helene requested a copy of "Journey With Jeff." She wrote: "When I received your book I decided that from now on nothing gets done until I have finished!" Her conclusion: "Journey with Jeff is a heart-warming, heart-rending book. It portrays the devotion, frustration and courage demonstrated by parents and caregivers of special needs children. It also teaches parents of children who have other either mental/physical disabilities how to cope -- with the Lord's help. Even in the 60's the term mongoloid was a cruel definition. A professional never should have used that term. Retarded isn't any better. God bless you both for nurturing Jeff's heart and soul with love for his Lord. Bless you for keeping the faith in times of trial, and loving each other so much, so Jeff could thrive in that atmosphere. Bless you for letting us all know that Jesus is our Best Friend as well as our God who we can talk to just as we speak to our earthly friends. The format of "Journey With Jeff" is special. Appropriate quotes at chapter beginnings, and the prayers at the end. Jeff gives to all who read his story his love and caring through his dedicated parents who helped him achieve his full potential." Helene's words are an example of the kind of community support and inspiration the Lord sent to encourage us, to show us we were not alone.

Hope For Challenges of Children with Special Needs

2010-01-28T21:10:00.004-05:00

Sharon Gibson has written, "The Seven Habits of Highly Effective Parents Raising Children with Special Needs." modified from Stephen Covey's, "Seven Habits of Highly Effective People." We strongly supported these Habits as parents of Jeff and Jennifer. They are intertwined within stories in "Journey With Jeff: Inspiration for Caregivers of People with Special Needs," written to encourage other parents, families and friends, so they'll not feel alone! Gibson writes about them on "About.com: Special Needs Children."~~~In short, these Seven Habits are: (1) Be proactive. Educate yourself. (2) Begin with the end in mind -- the next 10 minutes, the end of the day, 20 years down the road. (3) Put first things first. Your life doesn't need to be completely defined by your child's disorder. You are still a family. Don't forget other family members. (4) Think WIN/WIN. Help others understand how helping your child will help them. (5) Seek first to understand, then to be understood. You may need to educate, educate, educate. (6) Synergize -- Connect with other parents and families. You are not alone. (7) Sharpen the saw. Take care of yourself -- spiritually, mentally, physically and socially. Yes! YES! YES!!! Check these out in full on www.abaresources.com/familycorner/

A Caregiver with a Tail

2010-01-25T19:21:00.002-05:00

A caregiver with a tail has been coming to our church services and activities for about four months now! KODA is an eight-month old sheepadoodle dog who is being trained to sniff out life-threatening allergies for his teen-age master, Tyler. The family has named him KODA, which is an anachronism for Kids Overcoming Deadly Allergies. Right now they are teaching Koda to "Search!", so that he can later find the foods that will harm Tyler. He will learn to react to each allergy with a different response. Koda loves playing ball with Tyler and his sister Becca, and this ball will be his reward when he finds the threatening foods for Tyler.~~~The important job of all parents is to prepare a child with special needs to be able to live on his own in the future. These days, when there is a party, his parents will make it a special point to put the foods Tyler can eat in a bowl especially for him. In this way, others helping themselves to the main bowls (ie. potato chips, cheese curls, taco chips, etc.) will not contaminate the bowls with dangerous food on their hands. He has his own food at school and at church. As Koda completes his training, he will help Tyler go through his high school years by sniffing out allergies, and if Tyler does have an attack Koda will pull his medication from his backpack and bring it to him. Therefore, Tyler can live a life at school, at college, at work without the constant worry about foods making him sick. How amazing new developments for children with special needs have become! (Photo is of Tyler and his dad putting Koda's working vest on him at church.)

Caregiver Finds "Welcome To Holland (Part 2)"

2010-01-07T21:22:00.003-05:00

A parent of a child with special needs was searching for a story she had heard about landing in a country much different than where she had been heading. Someone sent her to a website quoting, "Welcome to Holland," by Emily Peri Kingsley, which I had used with her permission in "Journey With Jeff."~~~On the same website was Part2 of "Welcome to Holland," by Anonymous. I found this so profound, I'd like to share it with my readers.~~~"I have been to Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.~I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger - the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.~I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.~Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.~I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?~Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways, too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.~I have come to love Holland and call it Home.~I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.~Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!" Thank you, Anonymous -- dear caregiver of special needs children -- for your enthusiasm and encouragement!!

Caregiver Newsletter AND Book Study

2010-01-05T20:23:00.000-05:00

Sent "Journey With Jeff: Inspiration for Caregivers of People with Special Needs" off to Illinois this morning. It was sent in response to a request from a man for a review copy in order to include a few excerpts in their Parent Support newsletter. Now, THIS is the reason my book was written! Parent Support! I have no idea where this man learned about "Journey With Jeff," but this blog has been included on my Face Book page, plus I often respond to other blogs about children with special needs. So,...it's out there!!!~~~Another pastor friend has asked about acquiring copies of "Journey With Jeff" for their Book Study group to use in February. I am delighted that the story of our joys and challenges of living with a child with Down syndrome is finding its way to so many! The responses from my readers are extra special, and I look forward to every one!

A Good Gift for Caregivers

2009-12-16T19:55:00.003-05:00

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

2009-12-15T19:36:00.003-05:00

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!!

Family Support

2009-12-04T21:00:00.000-05:00

Family support came today in the shape of Janette, a step-cousin whose life touched mine after Jeff was here and gone. Her mother was my uncle's second wife. She was also a quiet caregiver to my father who lived nearby. Janette's encouragement for me has been a note every so often. Today she sent a story about a young woman who walked into a floral shop looking for a holiday arrangement after she had lost a baby, and her husband's job was threatened, and her sister couldn't come for the holidays. She burst into tears when the florist asked what kind of arrangement she wanted, then blurted out some of her pain. "I have just the perfect arrangement for you," said the florist, excusing herself to go back to her small workroom. She quickly reappeared, carrying an arrangement of greenery, bows, and what appeared to be long-stemmed thorny roses. Except the ends of the rose stems were neatly snipped: there were no flowers! Was this a joke? Who would want rose stems with no flowers? The florist explained, "Three years ago I lost my husband. For the first time in my life I had to spend the holidays alone. I had no children, no husband, no family nearby, and too much debt to allow any travel." The woman asked, "So, what did you do?" Quietly the clerk said, "I learned to be thankful for thorns. I've always thanked God for the good things in my life and I NEVER questioned Him why those GOOD things happened to me. But when the bad stuff hit, I cried out, "WHY? WHY Me?!" It took time for me to learn that the dark times are important to our faith! I have always enjoyed the 'flowers' of my life, but it took the thorns to show me the beauty of God's comfort! The Bible says that God comforts us when we're afflicted, and from His consolation we learn to comfort others." Praise Him for the roses; thank Him for the thorns.~~~Today Janette wrote, "Journey With Jeffwas very well written....almost like I was right there with you,...crying right along with you. Some things are a blessing in disguise. We are just not able to see them, or to see it as a blessing. You have great courage and strength." Thank you, Janette, for your support and encouragement!!

Family Support

2009-11-21T22:09:00.000-05:00

An excerpt from Journey With Jeff: Inspiration for Caregivers of People With special Needs ~~~ Jonas Salk said, "Good parents give their children roots and wings. Roots to know where home is, wings to fly away and exercise what's been taught them." Grandma Reisch asked twenty-two-year old Jeff at her supper table, "How do you like it where you live, Jeff? Do they give you all you want to eat? He can have all he wants to drink here. Give him another glass of milk!" "If he has too much to drink he may wet the bed," I cautioned. "If he gains too much weight, the dietician puts him on a diet." Jeff responded at once, "No diet, Mom. Don't want!" Grandma asked, "Do you do the dishes at your house, Jeff?" I added details to his affirmative answer -- he did the dishes and his own laundry. Jeff vacuumed and helped get the meals. "He really helps with the meals?" Grandma asked, and I explained that this was one of the goals in his residence program last year -- to get peas out of the freezer into a pot, cook them, and serve them for supper. Grandpa Reisch thrust his fist up into the air and down again in a victory gesture. "I don't care what anybody says! He's all right!" My prayer -- Abba Father, thank you for the work Grandpa Reisch has been doing with the Association of Retarded Citizens for many years since Jeff's birth! Thanks for this grandparent's support! Amen. (Photo is of Jeff with his family, including grandparents.)

Wegmans Stores Welcome Jeff

2009-11-13T16:40:00.000-05:00

Good news for Caregivers! Journey With Jeff; Inspiration for Caregivers of People With Special Needs is in 5 -- FIVE -- of the Rochester area WEGMAN stores! Been waiting for three weeks while the store installed it in its computers, and sent it to the Brockport, Irondequoit, Latta Road, Pittsford, and Penfield stores. I saw it in the Brockport display today! If I'd have had the agility, I would have clicked my heels in the air! Had a hard time not squealing with excitement the way they do on "Ellen" and "Oprah"! strong>~~~ It seems to me that even more people will see it in a display in a supermarket than in a bookstore. And, more of the people with lower incomes can buy it at a discount. I'm still praying that "Journey With Jeff" will get to all the people who need it. So far, I've sold or gifted 525 copies, and still feel there's more to go, to give caregivers encouragement with their challenges. (And, I hear of more and more people passing it on!) My friend, Kim, is my best PR person -- she was the one who made this connection! Thanks, Kim! We'll keep on keepin' on!!!

Even Churches Have Special Needs

2009-11-10T22:35:00.000-05:00

Our Bishop, Marie Jerge has blessed me with stories of the ways she has used Journey With Jeff in her ministry within the whole, church-wide ELCA. This weekend she shared this story: A church was closing its doors forever, and Bishop Marie wanted to help them in their grief, and encourage them to continue trusting God. She chose a letter I wrote to God near the end of Jeff's life to illustrate: "O God! My heart is broken with the suffering of Jeff. I ask you to have much mercy. He's ready to go and see Jesus, to take Jesus' hand...he's so weak. After I asked yesterday that no tube be put down his stomach for food, I thought of the enormity of that decision, but medication for seizures didn't stop the one he went through for an hour and a half the night before! O Lord, have mercy! Signed, Your Sybil~~~~ My Sybil, my dear, dear Sybil. My Bob and my Jennifer and several of Jeff's friends whose hearts he has captured are hurting, too. I hear your prayers. My Son died, too. My parent's heart hears yours. Trust me, My child, please. Trust into My care Jeff Reisch. I know how hard it is to wait for me to take him Home with Me. The hugs you're getting and giving are My hugs, My presence. Wait for the Lord; be strong, and let your heart take courage; yea, wait for the Lord! I love you. I hear you! Trust Me. I will not leave you comfortless. You saw a huge rainbow through the hospital window, a sure sign of My presence with you through it all! Praise me, and remember...lean hard! Signed, Immanuel -- God with us!" Bishop Marie was a caregiver to people at a church struggling with special needs, and as she quotes "Journey With Jeff" she continues to bless me!

Inspiration For A Supervisor of Special Education

2009-11-07T16:03:00.003-05:00

Lee, a young teacher of students with special needs, loaned, "Journey With Jeff; Inspiration for Caregivers of People With Special Needs," to the Supervisor of Special Education at school. Lee says, "The woman praised your book as the most caring she has read. She has made it recommended reading." This school district has had Down syndrome children in their classes for the past six years.~~~ This is great, affirming news! A welcome recommendation from a professional in school administration. Thank you, Lee, for passing on her compliment and recommendation! (Photo of Jeff in his school in Dunkirk, NY)

Caregivers of People With Special Needs

2009-11-03T19:13:00.003-05:00

Met Rosalie at her presentation of "Sage-ism, Not Age-ism," about helping elders be all they can be. Since my aim for Jeff was for him to become all he was created to be, I offered "Journey With Jeff; Inspiration for Caregivers of People With Special Needs" to her to examine. She said she knew someone who might really appreciate it, and took it home to read. Today she wrote to me: "I have finished reading 'Journey With Jeff', and it is truly an amazing book. I fell in love with Jeff early in the book. I felt his pain as the seizures came and went. I was overwhelmed by the love you and Bob have expressed. I had empathy with Jen.~~~I found your style of writing short chapters very, very effective. For me, it was "just enough" to learn what was going on in Jeff's life. If the chapters went on and on, it would have been overwhelming emotionally for me. ~~~I would read one, maybe two or three chapters and stop to reflect on your experiences, the scriptures that you chose. I loved the use of words from songs as well.~~~In my experience, there is only One Story...it is the story of God's love for all of life. So, for me your story tells me that Sybil and Bob are reflecting that One Story. My life is blessed even more because I have met you and Bob, and read "Journey With Jeff." You gave me such a beautiful gift, Sybil, when you asked me to help you share this story. The Spirit of the Living God wanted it to happen, and I pray you find more ways to share your story."~~~This is the way the story of God's love in our life is spread -- by those who share "Journey With Jeff" with others in their world. Thank you so much!!!

Caring and Me

2009-10-30T18:32:00.000-04:00

Presenting a Workshop to Lutheran Women about caregiving, Journey With Jeff: Inspiration for Caregivers of People With Special Needs, naturally came into play. The person writing the review of my Workshop reported: "Sybil explained how her experience as a caregiver of a developmentally disabled son has shown her the importance of support for caregivers. She also shared with us several stories from "Chicken Soup for the Caregiver's Soul." Points she made that can help the caregiver included: 1. Laughter can change things - look for the silver lining; 2. Respect the dignity of the person - treat an adult as an adult, not a child; 3. Comfort for caregivers can be found in 2 Corinthians l:3 and 4; 4. Ask for help - others may want to help, but don't know what you need; 5. Find a friend who is willing to listen to you, or join a support group where you can receive encouragemnet from others; 6. Take care of yourself - you are very important to the person you care for. Since many people attending this workshop were, or had been caregivers, there was a lot of discussion and sharing of caregiving experiences based on the above points. Sybil suggested several resources caregivers might find helpful. They included "Chicken Soup for the Caregiver's Soul," and "Chicken Soup for Children with Special Needs." These books can be found in most bookstores. Sybil's book, "Journey With Jeff," is available on Amazon.com, or, along with a 5CD copy, can be ordered from her e-mail address, rsreisch@frontiernet.net." (Photo is of Lutheran Women convention table.)

Movin' On (Conclusion)

2009-10-27T21:19:00.002-04:00

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.)

Movin' On (Continued)

2009-10-26T21:17:00.000-04:00

We were proud, too, eighteen months after beginnng these respite weekends when Jeff received an award at BOCES for gaining three years of social growth...in one! Teachers and social workers, advocates and stff worked hard to understand Jeff's needs and to meet them. Our communication was open, honest, and often. Although he balked at going to the residence, once there, he didn't want to leave. I felt guilty when we made him go...But I knew Jeff would become much more independent if he didn't have his mother to make his sandwiches for him! When Jeff's seizures grew worse and more often, the uneasy staff indicated that Monroe Developmental Center was a better set-up to handle Jeff's situation. I had difficulty even saying "institution." Such a repulsive, jarring word. "Center" tasted better...gave more hope, more courage. Bob said we'd really done all we could for our eighteen-year-old. Jeff came back from his MDC respite weekend a happy person, asking to go back again right after school the next day. On the Sunday bfore Jeff moved into the Center, his sister baked a cake to share with our congregation. "Movin' On" was emblazoned across the top. I couldn't believe how joyfully Jeff went to live at MDC! Bob held out his hand and shook Jeff's hand. "Well, son," he said, "Goodbye. We'll be seeing you." A week later Bob confided that when it was time to leave Jeff...for good...he wondered if he'd lose control. Such an adult exchange of good-byes hid the depth of pain. A dozen professionals came for Jeff's 30-day-evaluation at MDC. We felt overwhelmed and excited with this supportive team...all these people were working for Jeff! Bob and I surprised Jeff after the 30-day-evaluation at the Center. He was playing his records, reluctant to come out for a hug. But he did. Then he said, "You and Dad...Back home!" Rejected! This visit seemed to complete the break from home. We both laughed, but I started to cry as the door shut behind us. No tears from Jeff...tears all week from me. I felt cheated, because I was no longer in control. Feelings! They're neither good nor bad, right? They just...are. (To be concluded.)

Movin' On

2009-10-21T21:27:00.000-04:00

An excerpt from Journey With Jeff; Inspiration for Caregivers of People with Special Needs; originally written to a family whose son was waiting to enter a community residence.~~~My beautiful fellow-parents, your son is ready, too, as mine was a little while ago, to leave home and live in a residence. A natural thing for a young man to do, right? Sure, if he isn't developmentally disabled! But wait a minute....No matter what goes on between the ears of our kids, they have the same needs and feelings of every person...to be loved, to be needed, to be all they're capable of being! I remember, and I relive the trauma with you...All the questions whirling around inside your head...What if he gets sick at the residence, or angry, or worried? So many of the staff are so young! How will they handle him? Will they understand him? Will he adjust quickly? No one can care for him like his own parents! Inside, you know this is for his greatest good! You know this is for your geatest good! His independence...Your independence. Thank God it's a process which takes time! I don't think I could have let him go if Jeff had left in one fell-swoop! We had to feel need first - the difficulty of handling him, the difficulty of finding babysitters, my fear of burning out from sheer exhaustion. A workshop at MDC offered us respite weekends -- shared care! It was tough driving away, leaving him at the Culver Road Residence. I left a huge chunk of myself there too. Time and time again I hollered for help from the Lord! And the help God sent was in the form of people...many, many people. People such as Joan Van de Wall, who came to the residence to pick up Jeff for church and Sunday school...and, eventually, the Seed Group, and then a confirmation class. One Pentecost we celebrated something we never dreamed could happen...Ecstatic tears ran down our faces as Jeff plus three other developmentally disabled young men were confirmed! We were proud, too, eighteen months after beginning these respite weekends when Jeff received an award at BOCES for gaining three years of social growth...in one! (To be continued...)

Be Encouraged!!

2009-10-10T20:59:00.003-04:00

The grin on Jeff's four-year-old face encourages everyone who picks up "Journey With Jeff; Inspiration for Caregivers of People with Special Needs." Some read the book in one day. Some use it in their daily quiet time with God. In April, one of the women I met at a Lutheran Women's Retreat near New York City bought a copy. Recently, she sent me this note: "On September 8th when I presented your book to a group of ten Lutheran ladies, I told them how this book held my interest. I wanted to share this with them, not only for Jeff, but for the love of two devoted parents. Your struggle of day to day caring, your deep faith in Jesus Christ, and your unconditional love for him gave them a better insight into the book. Also, our church has a Reading Group that meets once a month. They may consider reading this book as a joint venture.~~~ At our Upstate NY Lutheran Women's convention this past weekend a friend of mine who lives in Oswego, NY -- Snow Country! -- said she was planning to present "Journey With Jeff" to her women's group this year. As I have presented the book to women's groups, it is amazing to find how many of them grew up knowing someone, or who know someone now who has a child with special needs. This book was written to encourage caregivers,...so they know they are not alone.

The Value of Family Love

2009-10-07T11:10:00.002-04:00

Emphasis on parenting for children with special needs came from another direction today. This author received a comment on my blog post, "Special Needs Children/Music" from a young lady who wrote: "Family love, to me, is the most valuable thing you have in your life. If you didn't have your family, you wouldn't go anywhere. When you were down, they were there for you. When you needed something they tried to make that happen. When you think you don't have a family, you do. All you need to do is just give them a little call and they will be there for you. I got kicked out of the house when I was 18 and I had nowhere to go. I was around a wrong crowd and got into drugs. My addiction to meth was so bad, I nearly died. I realized that my life wasn't going anywhere and I needed help. The first people I called and the only people I called was my mom and dad. They were very happy to help me and got me into a drug rehab program. I am currently on the program and I can already tell that things are getting back to normal. I'm getting my life back, and most important I'm getting my family back." What a turn-around this young woman has made! She is thankful for her family's support and encouragement. May she Keep on Keepin' On, as she becomes all that God has created her to be!!

Special Needs Children / Music

2009-09-30T21:41:00.000-04:00

"I think I would have liked Jeff alot," writes a former neighbor after reading Journey With Jeff while on a trip to Texas. "There were so many things that he and I shared! His love of music. I studied the trumpet at Eastman School for a few years and often thought that I would make music my career, but that didn't work out. When I read about how much Jeff liked 'The Wizard of Oz,' it brought back some wonderful memories. I used to watch that movie every year without fail, alonside my mother when she was alive. When I was a child 'Somewhere Over the Rainbow' was one of the first songs I learned to sing. Sadly enough, even the date of Jeff's passing (October 12th) is the same as my mother's.~~~ The book is quite the inspiration and I am sure that many will learn and benefit from your insight, strength, and the example of your willingness and dedication to leave matters in God's hands. I can only hope that someday I can be as obedient to God as both you and Bob were during those most trying times. A relationship with God is something that we really have been trying to get our kids to take part in. Our teen-age daughter is starting on the right path, but her brother still needs some prodding ~~~ and prayer.~~~ When we were in Texas we went to Sea World. They were having a special event for kids with disabilities. One of the kids and her parents sat next to me in the stands and I nearly offered the book to the mother. I had read only about 2/3 of the book and I really wanted to finish it. From what I had already read, I wondered if the book would have been an inspiration to them. I'm sure it would have been, and I feel a little guilty about not offering it, but I am glad that I had the opportunity to read -- and finish -- it.I'm sure there will be others that I can offer the book to that will also benefit from it. Thank you so much for the book. I sincerely enjoyed it!" More than 500 copies of Journey With Jeff are Out There now!! Many have been shared by families and friends. We are so blessed when people tell us of the inspiration and encouragement they have found from reading this book. Thanks, Craig!

Exceptional Children Award Presented to Ablevision

2009-09-24T20:44:00.003-04:00

Ablevisionis an award-winning show produced entirely by people with special needs. They have a crew of 45 that meets twice a week to write, shoot, and produce a half-hour monthly show which is broadcast throughout the Boston area, and beyond. Through this program they seek to educate and entertain the community-at-large about a variety of topics through their unique prospective. On their youtube.com/user/Ablevision website they say, "We want everyone to know we can do anything! Not only do we want to portray people with disabilities in a positive light, but also offer a unique program that allows people with disabilities creative control and direction." They have interviewed Kevin James who starred in "Mall Cop"; people at Special Olympics events, like Michael Finlay, the top-ranked male figure skater; the director of Windrush Farm - a therapeutic horseback riding farm; and people at a community park clean-up in Hyde Park who were making it more handicapped accessible. The joy and enthusiasm, the hope with the challenges of this crew of 45 is very impressive. Keep on keepin' on!! (Photo is my interview on WARM 101.3)

A few Caregiver Connections

2009-09-23T11:46:00.002-04:00

Almost didn't go to the "Sage-ism; Not Age-ism" meeting. Didn't know whether or where I could plug in "Journey With Jeff; Inspiration for Caregivers of People with Special Needs." Rosalie Mushal-Reinhardt was the Sage-ing Leader, and was impressed enough with the copy I had brought with me to call it a beautiful book, an incredible story. The next day she wrote to me: "What a joy to meet you! I was thinking this morning in my quiet time about the 'What If's' of Life. What if you had not come to the meeting yesterday? What if you were shy and not said anything to me? What if....What if...What if... I am making a few connections with a family I know, and with an Alzheimer's Association, and will get back to you when I have them. Until then, may you and Bob know how truly you are the 'face of the Holy One.' Amen. Blessing galore, Rosalie." What an encouragement and inspiration to have someone see Christ in us!! Wait until she reads "Journey With Jeff," and sees the love of God reflected in Jeff Reisch!!

Inspiration & Encouragement For a Seventh Grader

2009-09-12T21:28:00.000-04:00

"Journey With Jeff was a book a close family friend, named Sybil wrote," Alex, my seventh grade friend, said in her report. "I loved and hated the book, it was a sad yet joyous book. The way Sybil wrote about Jeff was inspiring." (Her mother had e-mailed me, "I want you to know Alex really enjoyed and was very touched by your book -- she was so touched by it that she chose to do her first book review assignment on it.") Alex continues, "I loved it because Sybil talked about how Jeff's love filled a room, and he was always smiling at everyone. Another reason I liked the book was because every chapter began with a couple lines of text from something that was not hers and ended with a prayer that was hers. I hated the book because when one thing would get better another would get worse, but since it is a true story about Sybil and her son with Down's syndrome, she couldn't really help that, but it still is a minor drawback. Journey With Jeff was an amazing book and I recommend it to most people. I really felt like the book helped me grow as a person and changed my perspective on life and many other things. If I could describe it in one sentence it would be this one: This book was about a very special boy who did very special things. If you do end up reading it I hope it will touch your heart the way it touched mine."~~~High praise and encouragement from a very special young friend! Thank you, Alex!

Inspiration and Encouragement

2009-09-04T21:01:00.000-04:00

My Native American (Chippewa) friend, Jennie Lightfoot, is inspired and encouraged by her young nephew who lives with Down syndrome. She says, "He is the sweetest, most loving and kind man. I learn so much from him whenever we are together. He is so affectionate, and gives great hugs! Whenever I think of Jeremy, I thing of your Jeff. You are making a difference in God's world; you write so well. You were writing little personal stories a long time ago when we were roommates at a Multicultural Gathering, remember?" I remember her joy and congratulations last summer when she could finally buy the book ~~ Journey With Jeff ~~ that she had been encouraging me to complete. The joy of making a difference in God's world is indescribable! Thank You, Lord!

"Journey With Jeff" Showcased at Barnes & Noble

2009-08-29T21:26:00.000-04:00

"Did you write this book about caregivers?" another author at our Barnes & Noble Author Showcase asked me as we were packing up to go home. "Yes, Jeff lived with Down Syndrome for 27 years," I replied. "He was our son." Handing me the beautiful display print of his poem, "Snowflake," written in caligraphy, he said, "Then this is for you." The poem was poignant, and reminded me of Emily Peri Kingsley's metaphor of a journey titled, "Welcome To Holland," (Pp. 17-18 in Journey With Jeff.) I share here, C. W. Matthews' gift of "Snowflake" for me:~~~"I watched in silent awe, as it fell towards the earth....Dancing to and fro, in a silent sort of mirth. It's singular crystalline shape, was the only one of its kind....To fall earthward from the sky, since the origin of time. As the crystal began to melt, and slowly disappeared from sight....I came to understand the gift, He gave me on that crisp snowy night. You see....like that little snowflake....I am truly one of a kind....Singularly unique....in body, soul and mind."~~~Yes, Jeff was one of a kind. Singularly unique. God's gift to us, and, to the world! Praise God!

Service Dog Caregivers

2009-08-26T20:19:00.002-04:00

Jeff began having seizures when he was 14 years old. If Seizure Alert Service Dogs had been trained back in the 70's, perhaps Jeff would have had one, and not needed a helmet to protect him from falls when he seized.~~~It amazes me how many ways now, in this century, dogs can be trained to help!! There are dogs for autistic children. There were none when I was working with an autistic student in the 90's. "Google" alerted me to a story of a Bouvier dog which helps relieve an Illinois autistic 5 year-old boy's fear and anxiety, his tantrums and incessant handflapping, and helps him get back into focus to do what he should be doing. He spoke his first words, commanding his dog to "wait," and "hold." A wonderful miracle for that family!~~~A young teenager in our congregation who has struggled with food allergies all his life, able to eat hardly anything, is now working toward getting an Allergy Alert Service Dog which will sniff out allergies in napkin-covered food. The $7000 puppy is in Colorado, and his new owner needs traveling funds and training funds to cover a period of two years. Our communities are helping raise those funds.~~~Blind and deaf people and others with special needs can have dogs to help them be more independent in our world. There is more and more to be thankful for! (Photo is of the young Author with her dog, Fluffy, not a service dog caregiver.)

A Different Point of View

2009-08-19T21:34:00.002-04:00

My friend, Bobbie, surprised me by saying "Journey With Jeff"had changed her life! She and I belonged to a Writer's Group where I read an excerpt from this book for them to critique a while ago. Bobbie said, "You made me see a different point of view. Usually I avoid people with special needs so I don't look as if I am pitying them." She continued, "Driving through town recently, I saw a person leaning on arm crutches crossing the street -- very, very slowly. It made me wonder what it must be like when crossing a street requires every bit of one's energy." Was Bobbie putting herself in that person's shoes, and sensing her determination, courage, and perseverance, rather than looking the other way?!? It makes me very happy to make a difference in someone's life!

"Big Bird's" Music

2009-08-15T14:26:00.000-04:00

Each time I run into Lance, an LAI caregiver, alias "Big Bird," it is a wonderful surprise, and Lance seems to think so, too. When I took my 87 year-old friend, Dorothea, for a doctor's appointment, Lance also was there. Dorothea had been saying how she found something new in Journey With Jeff each time she read it. She was delighted to meet "Big Bird" (his story, "Big Bird's Car," is on pp.259 -261,)who continued with other stories about how he and Jeff had bonded over their love of music. He remembered having MTV on in the morning at Jeff's residence, when Jeff always had to say goodbye to each of the instruments before he left. "Goodbye, Trumpet. Goodbye, Drums. Goodbye, Sax."~~~ We talked about the fun at the LAI parties celebrating their 5th and 10th Anniversaries. Jeff's best friend, Foch, loved to take the mike and try to remember the words to the songs the band played. Jeff danced up a storm, then was eager to have his turn with the drums during intermission. I love the stories -- the memories -- I hear when Lance and I meet.~~~ (Photo is of the Christmas gift Jeff's sister, Jennifer made for him.)

Journey With Jeff; Inspiration for Caregivers of People with Special Needs: Special Needs Children

2009-08-13T21:01:00.000-04:00

Journey With Jeff; Inspiration for Caregivers of People with Special Needs: Special Needs Children

Special Needs Children

2009-08-13T20:50:00.000-04:00

Karen, the child between Jeff and his friend, Robbie in the photo, was born prematurely and spent several weeks in a hospital incubator. Karen and Jeff spent their first few years together. Her story is in Journey With Jeff. Today she works in a Nursing Home as a C.N.A. and we keep in touch by notes, and by Face Book. Karen writes: "Yes I did read Jeffery's story, and I remembered the fact that God made great people like Jeffery. I still remember when we played together. Do you remember when you ran over a snake when we all were going to visit your mother and father? I will always miss Jeffery as well as you and Uncle Bob. Love, Karen Marie." Her mother, a close friend of mine, was a big influence in my life. Her advice is also included in Journey With Jeff. Karen said a number of people had asked where they could buy a copy of the book so I told her they could order it from Amazon.com, or from me at my e-mail address: rsreisch@frontiernet.net. Who do you know that could use a copy of Journey With Jeff; Inspiration for Caregivers of People with Special Needs"? Order it today for someone who needs to know they are not alone in their caregiving.

Inspiration and Encouragement

2009-08-07T20:50:00.003-04:00

Jeff loved Camp Joy! He loved Joan Van de Wall, Camp Joy Director! Joan was there at the end of Jeff's earthly life, when he told her he was ready to go to see Jesus. For a while I couldn't go back to Camp Joy, but I wrote about it in the script of "Journey With Jeff," first produced in a 5-CD package. When Joan listened to these she wrote, "Your tape is an absolute spiritual piece of hard and struggling work! It is an inspiration to all who listen. I can feel your hurts, struggles and at times discouragement. I could also feel Jeff's emotions, which brought back many memories. I could feel Bob's struggles, too, and his faith. Yes, Jennifer, too --her patience at times and her love for her family, and Jeff. This work of Discipleship is great for anybody who is struggling with their problems -- the same 'God, hear my cry;' and 'God, help me to listen and trust;' and 'God, I love you, help my unbelief!' Jeff's faith just shines through like the light in a dark room. He sure is a precious gift to all he encountered."~~~Joan bought a couple dozen copies of "Journey With Jeff" to give away to her Camp Joy staff. Memories were stirred. People became aware of what parents of people with special needs go through. Some said it was amazing what Jeff could do, and what he could understand. Camp Joy's staff is incredible, too. They have been loving caregivers for more than 25 years! I can hear Jeff's affirming, "Yeah, Mom!!" now.

Family Support

2009-08-03T11:40:00.000-04:00

To my brother, "retarded" means that a soul has come to this earth to rest and to teach. Jeffrey surely was our teacher! A number of our family have responded with careers of working with people with special needs. Friends, too! I am more than thankful!~~~ I wasn't very thankful when my brother, John spoke to me early on that Jeff was not responding as a "normal" child. He says my hackels shot up! It took me a whole two years to hear that message, then to ask, "Where do we go from here?" When Jeff was 5 or 6, John remembers Jeff visiting his home. He had a German Shepherd, "Horse," that Jeff was thrilled to hug and chase. He says, "After about an hour of running, Horse decided it was time to rest, and he put his shoulder against Jeff, and pinned him to the wall. After the commotion this created (Jeff screaming) the two of them went into the bedroom and laid down together for a rest. Even Horse knew that 'Special' did not mean anything other than to learn to communicate differently." John remembers only a handful of meetings with Jeff, always with a house full of people, where John recalls Jeff always fit in. Since my brother and I have not been on the same road traveled, these memories of his are pure gold. Thank you, John!

Caregiver's Reviews

2009-07-22T17:59:00.000-04:00

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

2009-07-18T21:37:00.000-04:00

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

2009-07-11T18:26:00.006-04:00

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

2009-07-08T17:51:00.003-04:00

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!

2009-07-03T18:41:00.003-04:00

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

2009-07-01T11:09:00.003-04:00

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

2009-06-30T12:47:00.003-04:00

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

2009-06-25T10:03:00.006-04:00

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

2009-06-15T19:19:00.003-04:00

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!

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

2009-06-13T19:10:00.000-04:00

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

2009-06-10T22:25:00.003-04:00

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

2009-06-06T17:47:00.003-04:00

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

2009-05-30T20:01:00.000-04:00

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

2009-05-25T23:00:00.000-04:00

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!"

2009-05-20T18:18:00.005-04:00

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

2009-05-16T20:23:00.002-04:00

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!

Caregivers at Retirement Community

2009-05-15T17:41:00.005-04:00

We did it! One of the women at the Passavant Lutheran Retirement Community bought the 500th copy of "Journey With Jeff." She was very surprised when I told her she had won the prize -- my 5CD package of "Journey With Jeff." So, she can read the book or listen to the CDs in her car or in her home, or pass it on. She was pleased, and so was I! ~~~ Other great moments for me were the women who came forward to where half a dozen posters hung of Jeff's life -- from his 3 month-old photo with his big wide-open eyes, to the photo of him sitting in his favorite innertube the last summer he went to Camp Joy. One person shared with me how she worked with children at a Lutheran Institution for Children with Special Needs for 25 years, another shared the years she lived with a son who didn't speak until he was a teenager, and a mother of a Down Syndrome girl shared her joys and challenges. These are the things I treasure! It was an awarding trip!

"Journey With Jeff" IS Out There

2009-05-10T18:38:00.004-04:00

Oh, my ears and whiskers! Have you ever entered your own name for a Google search?!? When I did that I found 42 entries of my name as author of "Journey With Jeff." This included a website for the United Kingdom~~~ Amazon.co.uk! Jeff is in England! Some websites were in another language, German, I think. Do you suppose Jeff's over there?!?" Journey With Jeff" is listed in a Pennsylvania County Down Syndrome Interest Groups website, and on the National Accessability website. I was especially touched by the book being mentioned on Dads4SpecialKids.com ~~ that was a serendipitous find! Every couple of months I receive royalties from BookSurge/Amazon.com for books, and I have no idea who has ordered "Journey With Jeff." However, now I am aware of the wide width of possibilities!!

Support From Family and Beyond

2009-05-07T19:28:00.000-04:00

Never would almost 500 copies of "Journey With Jeff" be broadcast from sea to sea without the help and support of my husband Bob, Jeff's sister Jennifer, and her husband Jim. Their encouragement, and technical and financial expertise have been inestimable! Before the book was published, Jim's mother, Jeanne, helped make a collage of Jeff's photos and a Table of Contents to fit into the 5CD package of "Journey With Jeff," which I read from the original script. There are approximately 100 copies of the CD 'Out There!' ~~~ This week Bob and I will travel to Zelienople, PA, to visit his sister and her husband who live in a Lutheran Retirement Community. I'll take CDs and copies of the book to accompany my presentation for the Women of the ELCA. Perhaps I'll make the last few sales for the total of 500 copies of the book!? Hope springs eternal!

Differently Abled

2009-04-24T19:22:00.004-04:00

Jeff loved to be busy, to be helping people. And, the people around him found jobs for him to do, enjoying the wide smiles he gave so generously. I was very thankful for the wisdom, support, and encouragement of those wonderful persons! Today I learned of another
mother whose 43 year-old differently abled daughter is living in an LAI Assisted Living apartment, going to a work program, and eager to help plan lots of activities for her group. This mother says, "I enjoyed reading Journey With Jeff. It reminded me of the difficult times I went through with my daughter, and made me feel successful for having met those challenges! The book gave me some ideas of what's available. It inspired me." I am inspired by remarks such as this mother's, as I watch the ripple effect of Jeff's story.

Easter Hope!

2009-04-13T11:52:00.000-04:00

Jeff loved the drums...all drums! He was fascinated by the tympani that one of our students played at the end of the Good Friday service, imitating the sound of a huge rock being rolled across Christ's tomb. It often made him sob when he heard it. We don't use fragile tympanies anymore, but Bob and I always think of Jeff's reaction at the end of that service. So, Friday came again this year, then quiet Saturday, and, finally, the joyous Easter morning we're hoping for! Our church was Easter-full, and visitors stayed to visit over coffee. I'm always glad when one family living out-of-town comes, because she and I can talk about our love of writing. She has just finished reading Journey With Jeff, and told me she had no idea of all that our family had gone through. "I liked your honesty," she said. "You told it like it was!" I'm hoping she will write a review for Amazon.com. There are 9 reviews on that website so far, and I'm always seeking for more. If you, my reader, would consider writing the few words you might tell me directly, into an Amazon.com review, I'll appreciate it immensely!! Thank you!!

Inspirational Community Support

2009-04-04T23:34:00.000-04:00

Tonight at a Fire Department banquet Bob and I renewed our appreciation of the inspirational community support of the Hamlin Fire Department. Bob was active for many years, and still is invited often to give the invocation and bendiction at banquets. A woman I had never met before said her mother had given her Journey With Jeff to read because she has a 32 year old daughter who lives with Down syndrome. Jeff sure gets around! Beyond any distance I can imagine! (So far there are about 500 books out there!! That is absolutely wonderful!!) One of our best long-time friends remembered she had bought a CD package of Jeff's story when that was produced in 2005. She said she'd listen to it again on the way to and from her work with children with special needs at school. I asked another long-time friend if he would write a review on Amazon.com of Journey With Jeff. He replied that his answer was too personal because now he understood why Bob was who he was. Wow! Profound! But I think his wife might persuade him to tell her what he wants to say on the readied website page. The community inspires me when I hear how Jeff's story has blessed others! (Photo is Jeff and his dad at the Hamlin Fire Department Carnival.)

Family and Community

2009-03-29T20:59:00.001-04:00

Our church has very much become our family and our community! Since children and grands live too far away to make it to our Lutheran service in Kendall, NY, each Sunday, most of our activities center around Concordia. The people cheer me on, and ask how Journey With Jeff is doing. I tell them the book has gone from Rochester, NY to Jacksonville, FL - from Lubbock, TX to Wasilla, AK - from Doylestown, CT to Oaks, OK. Not only does Journey speak to families with differently-abled people, but it has also been an encouragement for other people living a difficult life. One Concordia elder wrote: "I have just finished reading your book. You did such a nice job relating your days, living with Jeff. I know it strenghened your faith and helped you in those trying days. Your book also helped me with my outlook on troubling times in my life. I have always believed we can cope with all things with the love of the Lord. You have set a great example for us all of how you did such a wonderful job with Jeff. God will continue to bless you, and so will I." Wow! Such a beloved family and community!

Caregiving For Caregivers

2009-03-28T17:00:00.004-04:00

My neighbor is a Social Worker, a caregiver for many people. Last summer she bought a copy of Journey With Jeff: Inspiration for Caregivers of People with Special Needs.Today I asked if she had been able to plug in Jeff's story with any of her work. She said the book opened her eyes so she could help parents deal with difficulties. She was enthusiastic as she spoke of sharing it with co-workers who had people living with Down syndrome in their care, and with others in her office. Parents to whom she loaned her copy told her it was worthwhile reading. Caregivers need caregiving, and I'm so glad to see my neighbor pass it on!

Encouragement On The First Day of Spring

2009-03-24T13:11:00.001-04:00

It pleased me very much last Friday when the Wellness Center elder seniors responded with laughter, questions, and their stories at my presentation for Journey With Jeff! We encouraged each other with such comments as, "All the children with Down syndrome I've ever met are very loving." Of course, I was happy to agree with this! One mother has a son who is differently abled whom she knows she will lose soon. I'm glad she could share that grief. Caregivers need caregiving,too. A woman said there were twins in her family years ago, both of whom had special needs. Many resources were not available then as they are today. One of the boys grew up to live a fairly normal life, while the other was shut away from the public eye. An Asian grandmother asked me if I agreed with her about not allowing the teacher of her granddaughter, who is an adopted child from China, to put her back in the previous grade now, instead of in September. My encouragement was to agree that she tell her children this. Before my presentation began, a woman bought Journey With Jeff, but her husband said he had no time to read such books. As everyone was leaving, he said, "I think you've convinced me that I should read your book, too." Yea! Now that was encouragement for me!

Encouragement

2009-03-09T10:44:00.003-04:00

We all need encouragement! This week at our Lenten mid-week service our Pastor encouraged our sharing with someone else the Good News of God's love and care, by giving each of us a $5 or $10 bill to match and to pass on. There was a Benefit Show for Caitlyn, a 10 month old girl with Neuroblastoma this weekend to help off-set the costs of her treatment. To encourage Caitlyn's caregivers, Bob and I tucked the bills into four of my favorite chapters of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs" and signed the book, "From one caregiver to another." We deeply hope God's love and care come shining through! (Photo is of Jeff at one year.)

Jeff as the "Cowardly Lion"

2009-03-02T20:38:00.003-05:00

With March coming in "Like A Roaring Lion" here in upstate NY, I think of Jeff's imitation of the Cowardly Lion in "Wizard of Oz." Jeff had a mighty roar!!~~~Here is an excerpt from "Journey With Jeff" called "Jeff's Roar." The quote, "Be strong and courageous" is from Joshua 1:7a -- "Sheila Matthews, on the staff at Jeff's residence says, 'One of the fondest memories I have of Jeff is the morning wake-up routine. I thought and thought about the difficulty of waking Jeff up because he was such a sound sleeper. One day I remembered how much he liked The Wizard of Oz, especially the Cowardly Lion. So I talked to him about the Cowardly Lion as I was calling his name to wake him. Once Jeff realized what I was saying, he would awake with a roar, then go into the different scenes from the movie. I'd try to do scenes along with him but he said, 'No Sheila, not that way. I do it.' No one could do the Cowardly Lion like Jeff, which is why he was cast in the role for the LAI play.' Sheila continues, 'The other memory I have of Jeff is how he tried to scare staff members. Jeff was not very steady on his feet so you could hear him coming. But almost everyday Jeff would try to scare some staff person and I do believe a few times he actually got some of us. Doing direct care with Jeff and many of the other South Avenue gang were some of the greatest times I had in this agency. When Jeff said he loved you, you knew it came from the heart. He is missed but not forgotten. The closing prayer: Lord God, we give special thanks for the staff on night shift, responsible for getting the residents on their way in the AM. It's so easy to forget about those we never met. Bless them good, Lord!! Amen." (The photo is from the LAI production of Wizard of Oz with Jeff as the Cowardly Lion, and Claudia as Dorothy.)

"Journey With Jeff" Goes Home with Caregivers

2009-02-26T15:37:00.004-05:00

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!!

Spreading The Good Word

2009-02-22T21:17:00.000-05:00

Some very precious people have been reading "Journey With Jeff; Inspiration for Caregivers of People with Special Needs," and then passing the book on to others to read. Selma is one of those people. She has loaned it to three Special Education teachers, and to a grandmother with a hyperactive 12 year old grandson. This grandmother says the book has helped her to be more patient. It gave her hope, and she is looking forward to a second book around those people who have responded to "Journey" with their own stories. One of the teachers commented, "The family is blessed to have had such a wonderful young man in their lives." (Amen!) The teachers found the book very interesting and inspiring, and Selma said they all loved it. I am so blessed to have the book find its way into so many lives. (Photo is of Jeff in his Dunkirk classroom.)

Big Bird says "Hey there!"

2009-02-15T15:33:00.001-05:00

"You know," said Lance, aka "Big Bird", "I still get people coming up to me and saying, "I just read that story again about Jeff washing your car, and I am still laughing!" We met in the vestibule of a funeral home because Don Lawry, the founder of LIfetime Assistance, Inc. has died. His wife Donna still serves on the LAI board, and their son with Down syndrome, now 51, works in the agency's sheltered workshops. Many people were gathered around her, and I pray that support will continue for a long time.~~~ I encouraged "Big Bird" to refer those readers back to me so that I can include their thoughts in a sequel to "Journey With Jeff", picking up on the title of the last chapter, "And The Beat Goes On." How do people deal with the death of a beloved one? How do they create a new life? What do people do who have no faith? This, too, should be a book about caring for caregivers.

Old Photos Discovered

2009-02-10T17:06:00.000-05:00

It was absolutely amazing how well Jeff behaved each time we went out to dinner ~beginning with the time my
husband, Bob took me out to dinner because I was upset with a doctor telling me children with Down syndrome
never do this and never do that!! Jeff was extra good that evening! (See "God is Running With Us" in Journey With Jeff .) He seemed to know this was a special time! When Jeff's dad was interviewing for a job in Dunkirk, the Council president and his wife took us out to dinner. We were all surprised at how well Jeff handled a spagetti dinner while we were there, AND, his manners were perfect! We've discovered some old pictures of family get-togethers for birthday celebrations. These photos, taken at Jeff's 13th birthday dinner, are of Grandma and Grandpa Youmans and Jeff's sister, Jennifer, plus aunts and uncles. Jeff seemed always happiest around lots of people.

"Mother Warriors" by Jenny McCarthy

2009-02-06T20:20:00.000-05:00

I loved Jim Carrey before I met his wife, Jenny McCarthy, and her son, Evan, but now he's my Hero! He courted and married a woman with a small child with autism. Evan's autism made him scream through nights and days, misbehave in public, and caused the rejection of a number of friends and family. Jim told Jenny she had to feel the anger and frustration instead of putting on a smiley face. "If you feel it," he said, "you can heal it!" When she accepted Evan's diagnosis, and surrendered to it she said the healing began. (Compare my chapter in "Journey With Jeff" called, "Nitty Gritty Wisdom"!) "I needed to get on with life," Jenny said, "Life is fun! Evan is here for us to learn. He is such a light!! He made me who I am today." ~~ I, another caregiver of special children, learned that, because of all the sights and sounds accosting an autistic child, he needs to move his eyes away from you in order to listen to you! Diet has made a huge difference in Evan's life. So has focusing on all his accomplishments. Jenny emphasizes that there is power in knowledge, and power in community, as well as in a mother's instinct. She encourages mothers who feel alone to be more vocal and to ask for assistance, because thoughts and prayers also help. When Jenny asked her mother what she should do, her mother said, "Everything responds to love." YES!! The full title of Jenny McCarthy's book is, "Mother Warrior: A Nation of Parents Healing Autism Against All Odds." Sounds like a breakthrough to me! (Both of our books are available at Amazon.com. Enjoy!)