Caregivers at Retirement Community

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

Differently Abled

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

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.)

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!

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."

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.

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.

Travel Challenges with Kids with Special Needs

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

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

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