"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.
