The Hills Are Alive with the Sound of Music

This week "Sound of Music" played on TV. Jeff would have loved it! The following is an excerpt from Journey With Jeff; Inspiration for Caregivers of People with Special Needs, titled, "Following My Vision," with a quote from Habakkuk 2:2,3 -- "Write the vision; make it plain upon tablets... For still the vision awaits its time...If it seems slow, wait for it; it will surely come, it will not delay." ~~~ The overture to The Sound of Music from the TV filled our living room. Jeff and Jennifer had settled down to watch the movie following a full day with company after church. Despite the seizure Jeff had had at midnight last night it had been a good day! We were keeping watch to see how these attacks might be afftecting his whole body's system. He seemed to recover more quickly than his dad and I! ~~ All was done in the kitchen, and I joined them in the living room just as the sisters began their "Hallelujahs" in the abbey. Even Jen sang along. ~~ When it was time for the Mother Superior to tell a bewildered Maria, "You have to live the life you were born to live," I could taste the tears the next song would bring. The words struck a chord in my heart as she sang: A dream that will need all the love you can give, every day of your life for as long as you live! ~~ My dream was that Jeff would be as normal as possible - a whole personality through whom God's love would shine! That dream would need a refreshing and revitalizing every day of my life! ~~~ Lord God, I give everything up to You. You are in charge! Bring good out of these seizures, Lord, as only You can! Thank You! Amen."

A Walk In My Shoes by C. Waeltermann

Twas the Night Before Christmas ~~ Autism Style
And all through the house the creatures were stirring, yes even the mouse.
We tried melatonin and gave a hot bath but the holiday jitters they always distract.
The children were finally all nestled in bed
when nightmares of terror ran through my own head.
Did I get the right gift, the right color and style,
Would there be a tantrum or even, maybe, a smile?
Our relatives come but they don't understand
the pleasure he gets from just flapping his hands.
"He needs discipline," they say, "Just a well-needed smack,
You must learn to parent.." and on goes the attack.
We smile and nod because we know deep inside
The argument is moot..let them all take a side.
We know what it's like to live with the spectrum
The struggles and triumphs, achievements, regressions....
But what they don't know and what they don't see
Is the joy that we feel over simplicity.
He said, "Hello." He ate something green! He told his first lie! He did not cause a scene!
He peed on the potty, who cares if he's ten, He stopped saying the same thing again and again!
Others don't realize just how we can cope, how we bravely hang on at the end of our rope.
But what they don't see is the joy we can't hide
when our children with autism make the tiniest stride.
We may look at others without the problems we face with jealousy, hatred or even distaste.
But what they don't know, nor sometimes do we is that children with autism bring simplicity.
We don't get excited over expensive things. We jump for joy with the progress work brings.
Children with autism try hard every day - that they make us proud more than words can say.
They work even harder than you or I to achieve something small, to reach a star in the sky.
So to those who don't get it or can't get a clue take a walk in my shoes and I'll assure you...
That even 10 minutes into the walk you'll look at me with respect, even shock.
You will realize what it is I go through and the next time you judge I can assure you
That you won't say a thing, you'll be quiet and learn,
like the years that I did when the tables were turned. (www.autisticliving.com~~Photo-Jeff's sister's Christmas gift for him.)

Merry Christmas to My Readers!!

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

Hello From the Past!

Thirty-plus years ago a teenage gal in Dunkirk named Diane babysat with Jeff for us. Today she wrote an e-mail introducing herself again. She said: "I have a funny story I remember about Jeff -- I was babysitting one time and he proceeded to move some of his bedroom furniture out to the front yard -- do you remember that? I didn't know what to do about it, but let him carry on because it made him happy!" No, I did not remember that! Wish I knew what he was thinking as he wrestled it down the stairway!! ~~~Diane had received a Christmas card from Bishop Marie and Pastor Jim Jerge (who had married her and her husband) so she decided to explore the Upstate NY ELCA Synod website. She came across Marie's review of "Journey With Jeff," and said I still had that warm, kind face she remembered as a little girl, then asked to purchase a copy of "Journey." We wrote back and forth for an hour and a half -- What a bonus!! (Photo is of Jeff at 14, when we still lived in Dunkirk.)

Local Authors' Extravaganza at Liftbridge

This was the third Local Author's Extravaganza I've attended, and the largest one yet! It's great to bask in the energy of writers, known and unknown, and to meet new ones. There were refreshments, and a chance to talk with others about their books, and 5 - 10 minutes for each author to read excerpts from his or her book ~~ some good, and some just not my style. I chose to read "Welcome to Holland," by Emily Peri Kingsley (permission to include it in "Journey" granted by the author,) and "Jeff's Delight" about his love of music. Then I added the response I received from a mother in GA, who said, "In short, what I want to say is that "Journey With Jeff" has helped me to work through the last of my 'mourning' over the loss of the child I'd hoped for and welcome with open arms the trip to Holland instead." I am saving all these responses with the hope to include them in a sequel about how Jeff has blessed so many with his story. ~~~ One of the people attending this event was a legally blind, little person who is studying Social Work at Brockport SUNY. Very interesting to talk with, he bought "Journey With Jeff" in book form and as a CD, asking me to sign them both. Perhaps he'll be a key to having a professor use this book as a text for his or her class?!?!? That will certainly get "Journey" out there!!!!

Life at Jeff's Fullest Potential

Brenda is one of the Lifetime Assistance Inc. workers at Main Street, Brockport who bought a copy of "Journey With Jeff" earlier this year. Brenda recommends: "Journey With Jeff deserves a 5 Star Rating. This book has a message for all. Sybil's story about Jeff showed me his life, through her 'eyes and heart.' I saw and felt her challenges and pain. I wondered how she found the courage to keep going. Her determination to keep going even at times when she questioned the 'why of it all' is inspiring. She could have adopted that 'pity me attitude.' She did not. She took each day and found the true meaning of the little things that make up the life of a child. In Jeff's story, there is a message for all. The message is of Jeff's determination to live his life to his fullest potential and his Mother's courage to make sure that was possible. Sybil is an inspiration."~~~Thank you, Brenda!!

A Review of "Journey With Jeff"

One of the people who works with adults with Developmental Disabilities at Lifetime Assistance, Inc., wrote the following about Journey With Jeff: "I loved this book!! I read it a few months ago...and I learned so much. I work with adults that have Developmental Disabilities...and I learned more from this book than conferences I have attended. Sybil writes from the heart...and I learned such wisdom from her book, not just about Developmental Disabilities...yet about life, and positive and realistic perspectives. Hearing from a mother/parent perspective was so helpful in the field I am in...I feel this needs to be a training tool for anyone going into the field of helping people with Developmental Disabilities. Thank you Sybil for sharing your experiences, family, and good wisdom!

Grant Me the Serenity to Accept the Things I Cannot Change

Today I was surprised by the turn of a conversation with a colleague at our Lifetime Assistance Inc. December meeting. Discussing writing and my present marketing of "Journey With Jeff" I mentioned I'm thinking about a second book which would include the responses of people who had read "Journey," especially the mother who wrote that she could finally work through the last of her "mourning" over the loss of the child she'd hoped for, and was now ready to accept her son just as he is. ~~~"That's why I appreciate your book about Jeff," my friend said today. "My husband has brain injuries from an auto-motorcycle accident six years ago, and I also have had to get to the point of saying, 'Yes, this is who he is now - not the same man that I married." She shared how she and her family have dealt with this 'mourning,' this dose of reality, this grounding of expectations for who he is now. Not only is she a caregiver with LAI, but one at home as well. I offer her my deep respect! (Photo-Garden Step imprinted with Serenity Prayer.)

Greetings From Gov. Sarah Palin's Office!

My husband waved the envelope postmarked, "Wasilla" around in the air. "You'll never get mail from a governor from out of state like this again!" The welcome note was written by Sarah Palin's dad, Chuck Heath, who says, "Thanks so much for your book for Sarah. As soon as I read "Journey With Jeff" I'll give it to her. I'm helping her out with her mail as she is receiving literally hundreds of pieces weekly." ~~~ I am so pleased to know that "Journey With Jeff: Inspiration for Caregivers of People with Special Needs"has been received into the right hands!! (Sarah Palin's youngest child, Trig, is living with Down syndrome.) Trig's grandfather is a caregiver as well, and I pray he, too, will be able to absorb the encouragement I've written into the book. ~~~ I am so very glad I sent Sarah Palin a copy of "Journey!"

Happy Thanksgiving!

Although this photo was taken years ago while spending Thanksgiving with family in Pennsylvania, the company today serving Thanksgiving dinner at the Loaf and Ladle at an Episcopal Church was equally inspiring. A number of people (5) talked to me about "Journey With Jeff." One man had put the newspaper announcement of my appearance at the August Barnes & Noble book signing up on the church bulletin board. A woman I've known many years because of her involvement with Jeff at LAI reminded me that quite a few lives have been affected because Jeff has left this living legacy. A couple of people wondered where they could get the book. (If only I'd remembered I had a couple of copies out in the car!)~~~A year ago I wrote in my Journal, "Where is MY book about Jeff? Advent means waiting. O Lord, help me wait without complaining!" The next day the proof was in my hands! About a week later I held the first real copy of "Journey" in my hands, asking the Lord to help me get that book where those 120 copies needed to go! After spending $5500 on publishing this inspirational memoir, I have recouped the initial expense, praise God.!! Now I am working on catching up with costs of book purchases, envelopes and postage. Having sold about 425 books, I'm stretching toward 500! I still envision having at least 1000 copies out there making a difference in caregiver's lives! Lord, may it be so!!!

Bouquets From Anna, a Long-ago College Pal

Dear Sybil, When our mutual friend, Lynne told me about your book I wanted one also -- mostly because I remember you from OSTC, but also because my daughter who lives in Michigan is bringing up a handicapped son. He has been diagnosed as autistic.
I visited her when he was about two and he seemed perfectly normal to me, but soon after he had his DPT shots he seemed to change. I have heard autism is hard to find and doesn't show up much before they are two. She has special people working with him and an assistant teacher helping him in school. He is on medication and a very special diet which eliminates sugar, gluten, milk and milk products. He does well academically, but socialization and safety rules are a problem. He's 11 now and as tall as I am, but can't be trusted to look before crossing a street or a parking lot. ~~~I am convinced that the Lord sends special children to special people and you are definitely one of those. Being a caregiver all those years required tremendous stamina. We may not always understand why the Lord works the way He does, but we must never doubt Him. Anna ends this kind letter with a poem by D. De Haan:"Lord may we see in those we meet the imprint of Your image fair, and may their special dignity grow stronger from our love and care."

Australia: No Residency for Boy with Down Syndrome

A friend sent this Associated Press news article in the mail: ~~~"Sydney, Australia -- Thirteen- year-old
Lukas Moeller has Down syndrome. His father is a doctor who came to Australia from Germany to help fill a
shortage of physicians in rural communities. But now Australia has rejected Dr. Bernhard Moeller's application for residency, saying Lukas does not meet the 'health requirement' and would pose a burden on taxpayers for his medical care, education and other services. The case has provoked an out-cry in the rural region of south-eastern Victoria state, where Moeller is the only internal medicine specialist for a community of 54,000 people. Moeller vowed to fight the immagration department ruling. 'We like to live here, we have settled in well, we are welcomed by the community here and we don't want to give up just because the federal government doesn't welcome my son,' he told reporters. The doctor has powerful supporters. Victoria Premier John Brumby has pledged to support the family's appeal, and federal Health Minister Nicola Roxon said Friday she would speak to the immigration minister about the case. Moeller moved to Australia two years ago with his wife, Isabella, their daughter, Sarah, 21, and sons Lukas, and Felix, 17, to help fill a critical need for doctors in rural areas. They settled in Horsham, a town of 20,000 about 100 miles northwest of Melbourne. Moeller's temporary work visa is valid until 2010, but his application for permanent residence was rejected this week. In its decision, the Department of Immigration and Citizenship cited Lukas' 'existing medical condition,' saying it was 'likely to result in a significant and on-going cost to the Australian community," according to a statement on Thursday." My opinion is that these people in the Department of Immigration and Citizenship need an education!!! (Photo --Picture a traveling doctor...)

Amazing Events!

Jeff loved going to the Special Olympics events, and came home with ribbons each time. (See Photo.) When it
began, in the early 70's, everyone who participated received a ribbon, even if it was simply for taking part. Now, there are events all around the state, weekend after weekend. Amazing!! ~~~ Did you watch the 2008 Paralympics in Bejing on TV this past weekend? When the Olympics torch is lit I always cheer - and cry - at the same time. At the Paralympics a man in a wheelchair pulled himself up, hand over hand, finally to arrive at the ceiling of the Olympic "Bird's Nest" to light the torch! Whooooeeee! Amazing! One day this summer, my new friend, Randy, invited me into his house to see all his Special Olympic awards. On a long bulletin board in his bedroom there hung so many I lost count! My greatest disappointment was calling to volunteer to help at the Spring Event, and being told they already had enough volunteers. But I will keep on trying. It's great fun to be a "hugger" when the athlete completes his or her turn!! Amazing rewards - for all involved!!

A Book Review In The Works

When "Journey With Jeff" was newly published I asked an associate professor at a Center on Developmental
Disabilities if it would be a good resource for their Medical school. He told me that a mom who works at their
national headquarters had been asked to review it. Last week he wrote that the Review's not here yet, but this is what she said,: "Bill, I have read the book, and was deeply touched by it. The context for raising a child into young adulthood has changed some since she wrote the book...but then again, some things are the same. People still age out of the system when they leave public school, and we still have not figured out how to invest as a community in the supports they need to be employed and contributing as they could. So I will let those kinds of thoughts settle out before offering a review."~~~I am hoping that that mom sees the value of the thoughts and feelings and hope expressed in "Journey With Jeff," and the important message that caregivers of people with special needs do NOT need to feel ALONE! Gracious God, direct and bless her settling thoughts. Thank You!

Moving Into a Residence

"When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll
catch you when you fall, or He'll teach you to fly." I forwarded this beautiful message to a number of my e-mail
friends, including the mother of a boy in NC whom I met this summer. She replied: "This couldn't have come at a better time. I have really been having a tough time with my son. He has been acting out again. I don't know why he feels like he can attack his grandmother but he does. (In March my blog was about the dignity of risk for this child with special needs going out into the scary world to work a job. The grandmother wanted to do everything for him and protect him .) We have started Respite and about to begin developmental therapy with him. I truly do not want to place him in a group home. I have discussed this with him and he just says, "Mom, please don't put me in a group home." It just breaks my heart. I have been doing alot of praying and asking that God guide me through this. I tell you being a parent of a handicaped person can be so hard sometimes!! Well, only God knows the future. I just needed to vent this to you." I thanked her for sharing her tough time, and suggested she ask the people who are helping her with Respite and therapy to help her get in touch with parent or two of "our kids" who are already living in a group home. They can tell her first hand about their experiences. I reminded her that Jeff lived in a residence for 9 years, and that we worked together as a team all the way. I pray God will grant the professionals around them much wisdom, and grant her and her son His perfect peace as they work through this. I pray she'll take her time, and know that she is not alone. (Photo is Jeff on front steps of his Residence in Brockport.)

Grace and Peace from My Beloved Bishop

Upstate NY's Bishop Marie Jerge has shared a book recommendation in our Synod's e-mail Newsletter which goes to every congregation in upstate NY, as well as speaking of "Journey With Jeff" in a special occasion sermon last Sunday, AND in a sermon at Pacific Lutheran Seminary!!!
This is what she wrote about recommending Journey With Jeff: "There are many things about this book which I love-- but two stand out. Almost every chapter begins with a verse of Scripture. It isn't just the Scripture texts themselves, but the way they are used make it obvious that the Bible is central in the author's life. The Word of God somehow measures the rhythm of her days and weeks and months and years. It is part of her. Words of faith flow easily and naturally -- because they are so familiar not in a rigid, beat you over the head way -- but as her life blood -- sustaining and nourishing her -- flowing through her. It is also a wonderful book of prayer. The prayers tend to be short and simple. They touch the heart. And I was amazed and awed by her ability to give thanks -- no matter how bad things were. ~~~ Journey With Jeff is written by Sybil Reisch, a member of Concordia, Kendall. She can be reached and the book can be purchased by contacting rsreisch@frontiernet.net.

(Photo is of Bishop Marie Jerge on the right with two of my friends at a Women of Evangelical Lutheran Church in America convention.)

From One Caregiver To Another

Lynda Young from Snellville, GA, wrote: "I came across your book, "Journey With Jeff" and would like to order one from you. I read your blog and have been so touched by your heart and words. I have published a book, "Hope for Families of
Children with Cancer," in the You Are Not Alone book series. I am working on two more for families of children with heart disease, and families of children with chronic conditions. The chronic conditions book will include Down Syndrome also. I'd love to talk to you sometime about your journey (and look forward to reading your book.) My website is www.hopeforfamiliesonline.com On there is a short video of how the cancer book came to be. I haven't walked through those deep waters, but my husband has been in cancer research for over 40 years and I've volunteered at our children's hospital here in Atlanta. May God continue to bless and use you as you touch so many lives for Him." Lynda's website has many facets, and is well worth checking out. Her logo for 'Hope' is special.

October 12,1988--October 12,2008

It is 20 years to the day since Jeff went Home to be with the Lord! Those 20 years have gone quickly! Jeff has left a sweet, loving, happy legacy in "Journey With Jeff," our family's God-story. We are blessed by the people who say that they couldn't put the book down, or that they are using it as a devotional book, or that it has helped them accept the diagnosis of their own child with special needs. As the last line in "Journey" says, "Jeff's unconditional love and influence continue on." (Photo is Jeff fighting leukemia in the hospital, visiting with our Pastor, Don Miller.)

Cherish Our Children

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

A Single Rose & 2.5 # of Coffee

My Bishop and also my friend, Marie Jerge wrote: "Jim and I were both totally blown away by "Journey With Jeff. We both 'read' it as we drove and both of us knew moments when we had to pull to the side of the road because we could not drive safely through the tears. What an incredible and faithful and powerful witness to the wonder and grace of our God! I used a couple excerpts in my sermon this morning and several folks asked where they could get the book. You have done a wonderful thing in sharing your experience and especially your faith in the midst of tough times. Thank you! Thank you! Thank you! Jim will be in touch when he has a chance - but know that this has been a special gift to both of us." ~~~ Soon Jim came to our home, bearing a single rose ('I read your book,' he said) and a 2.5# bag of coffee!! (In the book I said that I think a single rose means more than a whole bouquet; and I wrote of times Bob and I talked seriously over a cup of coffee.) We talked over some tough times, then Jim bought 12 copies of "Journey With Jeff" to share with his prayer group, and for gifts. What wonderful friends!

Jeff's Enthusiasm

John McCarthy was there at LAI's 30th Anniversary celebration, so after trying several times earlier, I was able to get a copy of "Journey With Jeff" into his hands. John was the one to encourage Jeff's love of acting. ~~~ The "Enthusiasm" chapter in the book is their story. ~~~ "John, a recreation therapist at LAI, directed a residence production of The Wizard of Oz with Jeff in the role of the Cowardly Lion. He tells this tale: 'Everyone in the cast was doing a fine job playing their parts. When it was time for Jeff's entrance dressed as the lion, he let out a loud, ferocious, powerful, heart-felt growl! The audience thunderously applauded. Jeff did not merely say his line and play the role--for all practical purposes Jeff became the Lion. Jeff knew the story so well he was able to improvise dialogue with Dorothy, the Scarecrow, and Tin Man. It wasn't a recitation of lines, Jeff lived the part and the audience felt his enthusiasm and believed his convincing portrayal of the Lion. That's typical Jeff. I've never met anyone so enthused about stories and movies than Jeff Reisch!"

Ernie & Wendy ~ Then & Now

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

Lifetime Assistance Inc. Celebrates 30 Years!

What a wonderful party! 700 people were there for dinner, and to hear our host Don Alhardt (Channel 13 TV) introduce the people behind LAI's success, and then ready to Rock and Roll to 50's music. (See photo on the right ~~ Jeff would have been loving this!) ~~~ The highlight of guests was J Mac, the Athena High School athlete with autism who made national news when he scored 20 points in a basketball game, and when he met President and Mrs. Bush. He gave autographs and posed for pictures with several people after dinner. There was a slideshow of people and activities down through the years - and Jeff was up there! But the many clients who attended were anxious to get to the dancing, and the M.C. known as Bowser, played rock 'n roll music and hoola hoop contests, and dance contests, so several people ended up with "Bowser" tee shirts. ~~~ The best part of the evening for me came with the people who said they had read "Journey With Jeff," and thanked me for it. One of the training staff was surprised when I told her she was a Caregiver, too. She had never thought of her job that way -- her "eye-opener" from the book was the way we as parents coped with having a child with special needs. We had a long, warm conversation. My husband and I sat at a table close to the stage, with long-time friends, and new friends. It was an awesome celebration!

How do you read "Journey With Jeff"?

Hello again! My schedule was much too full a couple of weeks ago, and consequently my back stressed into spasms which lasted longer than usual. My doctor found that my asthma was aggravating things, slowing the healing down. I knew my doctor had picked up "Journey With Jeff" when a friend from church took it to a doctor's meeting and he proclaimed that he should have it first because he knew the author best! I asked if he had finished reading it, and he explained he's reading it a little at a time. My pastor is using the book as a devotional, reading it a day at a time. A couple of friends have said they read it through in one day, not wanting to put it down. How are you reading "Journey"? Have you written a review on Amazon.com yet to recommend that others read Jeff's story?~~~ This excerpt follows the previous blog's excerpt. It is titled, "Struck Numb." ~ "My God, my God, why have you forsaken me? Why are you so far from helping me, from the words of my groaning?" Psalm 22:1 ~ Eighteen-month-old Jeff was happy anywhere he went. He loved to smile at people and to give them hugs. I knew he wouldn't mind seeing another doctor, but I was on edge outside the unfamiliar office and impatient to know what this doctor would tell us about the persistently noisy breathing. ~ The nurse opened the door and called our name. Jeff grabbed my fingers and two of Bob's, lifted himself up, and led the way into the office. The nurse smiled, and I returned her smile, hoping it foretold good news. ~ Healthy ivy and spider plants hung from the windows and there was a palm tree in the corner of the room. I wondered, Did I water mine at home? The faint smell of rubbing alcohol, the tall cabinet of instruments, and the examining table in the middle of the room rudely reminded me of where we were. But I liked the Mozart that was playing, glad it wasn't popular or show tunes because when I had something important to do, classical music always helped me concentrate. ~ The tall, slim, forty-ish looking specialist appeared and spoke to Jeff and to us. He was quiet and friendly, and took his time checking Jeff's history, watching him pull himself around the office mostly in a sitting position. "Okay, Cowboy!" he finally said, "Are you ready to get up here and let me check you out?" ~ With a big smile, Jeff allowed himself to be lifted up onto the examination table. While he checked Jeff's active body and I held my breath, the specialist asked unhurried, studied questions about that noisy breathing. I began to relax and to feel optimistic. ~ Then he asked about the age at which Jeff had raised his head, sat up, stood up, and started walking. "Jeff took his first steps along about four weeks ago," I told the doctor with a proud grin. "He loves walking around our house, pulling us by our fingers, trying to race with our bouncing dog." ~ "Seventeen months old when he started to walk..." said the doctor slowly. "Did you ever think, Mr. and Mrs. Reisch...did you ever think that Jeff might be retarded?" ~ Suddenly I couldn't breathe. The room seemed very hot. Retarded? Our baby? Impossible! Slow maybe, but nothing to be worried about. The doctor's voice, describing various signs of retardation, darted in and out of my thoughts, shooting down bright hopes and dreams for Jeff one by one, exploding them out of existance. ~ I wanted to scream at the doctor, "No! You are wrong!" Instead, I gathered our papers and our coats mechanically, cold shivers running down my back. I needed desperately to get away from that office. Bob's arm steered us steadily to the car. Holding Jeff close in my arms all the way home, I rocked him and crooned insensibly, "Bye baby bunting, Daddy's gone a-hunting." ~ My voice cracked, but I kept on crooning. Numbly, staring into space, with tears running down my face, I repeatedly told myself, "When Jeff wakes up he will be our normal child again. Please, God." How do I pray, Lord? How do I pray? (Photo is Jeff at 2 years.)

"Signs of Trouble" -- Excerpt from "Journey With Jeff"

"Trust in the Lord with all your heart...In all your ways acknowledge Him and He will direct your paths." Proverbs 3:5,6
~~~~~"You two need to take that child to a specialist. Just listen to him breathe!" Jeff's visiting grandfather waved his hands impatiently in the air. "You could hear him all over the church this morning!" "But Dad," I protested, "Jeff's pediatrician says he is improving steadily! In his first two years he has had such a slow start, battling staph and pneumonia!" Seeking shelter from this gathering storm, I talked faster. "Some months he couldn't digest enough food to gain more than a few ounces, so Dr. Joni gave him Nilevar and Incremin with iron to help him assimilate that food. She ordered x-rays to rule out cystic fibrosis because she does see Jeff's breathing is becoming noisier and noisier. She calls it a crow. Doesn't that look as if she's on top of things?" "She's a general practitioner! You need to take him to a specialist!" We were at a crossroads, trusting our doctor, yet respecting our parent's insight as well. After some anxious thought and prayer, we asked Dr. Joni to make an appointment for us with a specialist. Graciously, she sent us to another general practitioner with an ear, nose, and throat specialty. Lord God, You have promised! You said that when we acknowledge You, You will direct our paths. So...we are asking...seeking...and knocking. Thank You for your promise! Amen.

Is Lifetime Assistaance Inc. one of the best kept secrets around?~~WARM 101.3 Radio Interview

So many things are going on for so many people at Lifetime Assistance, Inc.!! It all started back in 1978 as a small organization to provide services to a couple of dozen people in Western Monroe County -- where we live. Now, LAI offers services to 1800 people with developmental disabilities in 50 locations in 3 counties. Their seasoned employees work in residences, day programs, and the LAICO organizations which provide volunteer services to more than 50 Rochester agencies. Some of these employees have been with LAI for 25 years -- and counting! Only 17% leave a year, which means a great deal to the clients who have come to trust their advocates . We so appreciated these caring people who expect respect, digity, inclusion and self-advocacy for the clients, that "Journey With Jeff" is dedicated to LAI: "This book is dedicated to the wise, wonderful and winning people at Lifetime Assistance Inc., where Jeff spent his adult life. We cannot say enough good about them." While Jeff was living at his LAI residences I was a member of the Board of Directors. After he died, I volunteered to be Informed Consent Chairperson for the clients at LAI who have no family to advocate for them. On September 26th, LAI will celebrate its 30th Anniversary! I've been with them -- and they with us -- almost all the way! HAPPY ANNIVERSARY, LIFETIME ASSISTANCE, INC.!!

13WHAM News Interview

As a supplement to my last blog post, "Palin's Promise Heard 'Round the World," I guess I have some 'splainin' to do! I was so excited about having the interview with 13WHAM News on ABC, that I struggled right away to copy the 13WHAM.com/news/local/story to this blogspot. It all began late Thursday morning with a phone call from someone at Lifetime Assistance Inc. saying 13WHAM was wondering if there was a family from LAI they could talk to in order to connect to Sarah Palin's V.P. presentation the night before. I said I'd be honored to do an interview, and I had a call from the newsman about noon. He and his photographer arrived around 1:15, and did a 20 minute shoot. It was aired on the 5PM News that evening -- perhaps three minutes of it -- but people said to me at a meeting that evening, and the next day, "I saw you on the news tonight! I said, 'Hey, that's Sybil!'"~~~My vision is to have a video of interviews I've already done which I can send to "Oprah" and reach as many caregivers as possible with "Journey With Jeff"!!

Palin’s Promise Heard 'Round the World - 13WHAM.com

REISCH'S BOOK ABOUT HER STRUGGLES WITH SPECIAL NEEDS CHILD

(St. Paul, Minn. /Rochester, N.Y.) –Sarah Palin promised in her convention speech to help families of children with special needs.

For many parents raising children with special needs, a woman running for vice president, bringing their cause to the political forefront—was a first.

“To have that advocacy for our children would be wonderful,” Sybil Reisch said. Her son had Down syndrome. She said back then in the '60s and '70s, there wasn't much support available.

Last October she published a book about her struggles to help others. She hopes Palin also can show caregivers of children with special needs they are not alone, whether in Alaska or Washington, DC.

“If she did go to Washington we'd know that someone would be there to raise awareness and keep legislation going,”
Reisch said.

But not everyone is convinced of Palin's commitment.

Sherry Battisti has a son with autism. She's also a nurse for special-needs kids and says Palin will have to reach beyond talk--and focus on what's really needed, like meal assistance and equipment. That's pretty easy for most kids to get...it's all the other equipment that's harder for them to get."

In April, Palin gave birth to a boy with Down syndrome. Both Reisch and Battisti say Palin's promise to special needs families probably won't sway their votes, though they acknowledge it might for some others.

Publishing through BookSurge

My apologies to miss renee, and others whose comments and questions have had no e-mail address in order to contact me! Please see the newest addition below my Complete Profile on the left of this column. This missing key opens up the world of communication!!~~~miss renee asked if I would recommend publishing with BookSurge. It was a pleasant experience to work with BookSurge. Allison Brown has been my Publishing Consultant from the beginning, and continues to offer marketing support and BookSurge printing-on-demand offers. I chose three rounds of Editing, a Unique Cover, Marketing and PR Distribution, which added to the "Ala Carte" Cost. E-mail me if you'd like more details. Otherwise, you can contact BookSurge at (866)308-6235.

A Book Signing at Barnes & Noble

 
I looked up from visiting with the author next to me at our long table, and there he was! A seven year old young man with almond eyes, just like Jeff's, was looking me over. "Hello Sweetheart!" I said with surprise. He and his mother were there with two other caring adults. "What's your name?" I asked him. I needed some help to understand it was 'Riley.' His mom asked some questions about "Journey With Jeff" before asking me to sign it. "Write, 'To Riley'" she said. "No!" Riley protested, "Write, 'To Nana'" But 'Riley' won, and the night was made special by their visit!~~~That book signing was a great place to learn about other authors and their creations. One has been an Fireman/EMT for 25 years, and shared some stories of those rescues -- including adopting four children from overseas -- each of whom has a special need! One mother had written a story about her very successful son who is a dwarf. Her story title: "Who Says I'm Small?" A ninety-two-year-young man wrote "Wounded at Gettysburg" from letters his great-uncle had written home. He takes his book to places like Genesee Country Museum where there are re-enactions of Civil War Battles, and sits right in the middle of things where people will find him and buy a book. I came away from this Event feeling much richer!

Libraries! An Exciting Place To Be!

 
So many great things happen at our library! Wednesday afternoon four authors from Bethany House who write historical and contemporary romances had a book signing. I was especially interested in meeting Kim Vogel Sawyer, because she wrote, "Dear John", a story about a young man with Down Syndrome (who goes to her church.) She and I have e-mailed each other about our books, so I was particularly happy to meet her. In "Dear John," the heroine becomes the caregiver of her brother, John, after her parents' death. She agonizes about whether to keep him at home, or let him go out in the world, where cruel people could hurt him, to get a job. It was a great book, and I was delighted to have her sign it...."Sybil~~" she wrote,"He has great plans!" I just pray that I am aware of all the nudges the Lord gives me, so that "Journey With Jeff" can get out to all the people who need to know they are not alone as caregivers!!!

Conditional Love and Encouragement?

 
"You look so familiar!" I said to a woman at our Senior Center; "What's your name?" She told me, and we studied each other for a moment before we both said the other's name at the same time! Big hug! I hadn't seen her for many years, but I remember something I don't think she remembers. 25 -- 30 years ago when we often met for lunch I'd talk about my intense dream of writing Jeff's story for publication. After a while, when this work didn't fall into place, and I STILL longed for it, she impatiently said, "Sybil, I don't want to hear from you again until you've written that book!!!" ~~~ I believe she was challenging me to "Just DO it!"~~~ she believed this goading would motivate me to get it done!!~~~ Catching up a little with each other's lives today, I mentioned that I have written "Journey With Jeff." She responded lightly, "I knew you would."~~~ Maya Angelou has said, "I have learned that people will forget what you said; people will forget what you did, but people will never forget how you made then feel." I pray I will never bury a relationship with treatening words of conditional love.

The Intensity of Raising Jeff and Jennifer

 
I remember reading a book by Annie Dillard about living a life so deeply consecrated that it would be like a moth attracted to a candle. The moth would be so intense about the flame that he would actually fly into it and be consumed. ~~~ As I remember, Annie Dillard wrote that we needed to be so intense about our mission in life that we could be consumed with it. At that point in my life, I was bringing up a son with Down Syndrome and a daughter with high grades in school. Life was intense!! I was trying to learn all I could to help my son develop and become all God had made him to be, as well as our daughter. I saw myself consumed with this challenge!!! And, it felt good to have such a purpose!!~~~ I was also trying to gather all the notes I had written since Jeff was six years old (1967) when I began listing all the things this child COULD do. 30 - no, 40 years later "Journey With Jeff" was ready for the world! Publishers said, "This is lovely, but we can't use it," so I read the 155 stories onto 5 CDs. These also are available, for enjoyment as you drive. Send an e-mail to rsreisch@frontiernet.net. (Photo is Jeff helping his Jennifer learn to walk.)

The New "R" Word

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

RECOGNIZED!!

 
There was a woman standing at the library desk when I went to check out a book, and her face was wreathed in smiles. I greeted her with a "Hi!" and a smile, but had no idea who she was. She kept on smiling and looking at me. "Are you the author of that book?" she asked. "You mean Journey With Jeff? Yes, I am." She continued, "I thought so. My friend has an eleven-year-old son with Down Syndrome and she loaned it to me. I really enjoyed it!" When I asked her her name, I learned she lived about 25 miles away, and drove a school bus for that district. She said she had applied to drive a bus for Lifetime Assistance, Inc., but the schedules didn't mesh. ~~~ A school bus driver!! Now, there's a person I admire! (Photo of "Journey With Jeff" on CDs - first, before the book - in the local library.)

Return to Camp Joy

 
Carnival Night began the week-long evening festivities at Camp Joy on Monday. I helped encourage campers to try their hand at tossing "food" into net pockets to feed the animals on Noah's ark, cheering their efforts. Enjoyed talking to many of the staff I was part of for many years. Joan Van de Wall, Camp Joy Director, has purchased quite a few copies of "Journey With Jeff" from me, and given a number out to her staff. What a joy when some brought the book to me to be autographed! Leaving five more books there, I am so glad to be able to encourage these caregivers with "Journey," and, to say thank you! This is Camp Joy's 27th year, and Jeff was involved for 7 years before the Lord called him Home. The above photo was taken his last summer there. He considered the woman kneeling beside his wheelchair his true love for a very long time. Diane had been on the staff, and the Wednesday night SEEDS program, since the beginning. Last night Howie, the Camp Joy guy who used to pretend he was going to capture Diane, said, "My fondest memory is Jeff in his helmet and his Superman cape ready to protect her from me."