A Good Gift for Caregivers

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

Inspiration and Encouragement

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

Family Support

 
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

 
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

 
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

 
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

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

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

 
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)

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)

 
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

 
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!!

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

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

 
"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

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

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

 
"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

 
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

 
"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

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

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

 
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

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

Special Needs Children

 
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

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

 
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

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

Hope With Chanllenges

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

Busting Sterotypes

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

Aha Moments

Talk about inspiration! Mike from Mutual of Omaha, the 'official sponsor of the aha moment,' responded to my July 3rd blog, "Music, Music, Music." He said he really enjoyed this great post. "I have always marveled at the connection kids have with music, and special needs kids are no exception!" he said. "I thought you might enjoy this video in which Jack tells a story about helping a special needs boy sing a song in a talent show. They BOTH got alot out of it: ahamoment.com/pg/moments/view/203." Jack says, "I'll never forget that kid. He changed my life." As a professional musician, Jack had been hired for the summer to play piano in the great parlor of a summer resort. This ten year old boy hung out there listening to him play the piano. One day he asked Jack if he knew 'A Little Help From My Friends" from the Beatles. He played it and the boy sang it perfectly, then asked if he could be in the weekly talent show. They checked it out with his parents, who were very hesitant and afraid for him. Jack told them, "You know, he'll be with me. I think he'll be able to do it." Jack continues, "The night of the talent show, he gets up there and he knocks it out of the park. There wasn't a dry eye in the house." This joyful moment inspired Jack to look into another career. He earned his Master's in psychology and social work, working with kids. Aha moments ~~~ such wonderful serindipity!

Music! Music! Music!

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

Encouragement From Family

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

Journey With Jeff in Hometown Library

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

"Journey With Jeff" on Google Alert

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

Encouragement For Friends

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