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!