7 minute read
Lynn Roberts Chapman
August Lindsey
At two years old, Lynn Chapman’s life changed forever and a life-long lesson on how to love unconditionally began. On a September morning in 1959, her brother – Scott Alan Roberts – was born at Syracuse General Hospital. The otherwise healthy baby suffered a tragic brain injury at birth, the umbilical cord wrapped around his neck, cutting off critical oxygen during the birthing process. With today’s standard diagnostic equipment, the tragedy would have been averted with Scott delivered by C-section.
From that day on, the lives of the family he was born into – a 31-yearold dad, 29-year-old mother, six- and four-year-old brothers and toddler Lynn - the only girl - were never the same.
Throughout the 1960s and into the 70s, our culture gave little thought nor consideration to people born with disabilities. In fact, the word “disability” was not even used – instead “crippled,” “spastic,” “retarded” “impaired,” and “handicapped” were the labels given on the rare occasions such discussions occurred at all. Those afflicted were primarily institutionalized, a recommendation given to Scott’s parents after the infant received an official diagnosis of cerebral palsy due to his extensive brain damage.
Lynn’s mom and dad chose not to send Scott away – he remained at home until February 14, 1969, leaving when he was nine years old. It is no exaggeration to say that Lynn never remembers a time up until her 11th year when the focus of the family household was not almost entirely on caring for Scott, who never developmentally progressed beyond a six-month old infant.
Looking back, she understands the strain the family was under, although she never knew any other home life. “Scott had to be monitored 24/7/365, bathed, fed, diapers changed, teeth brushed and lulled to sleep. Each year he was growing bigger, progressing from toddler to a small boy, and with puberty only a couple of years away, a host of other challenges lay on the horizon,” Lynn recalls. At that time in the 1960s there were no outside resources available to help care for those in need, it was entirely up to the family. “Today, up to six hours of at-home care is provided by NY State, but not then,” she remembers. “It was all hands-on deck, but the main responsibility for Scott’s care fell on my mom, who stayed at home while my dad worked and we went to school.”
“My brothers and I all had our assigned tasks daily caring for Scott, and that increased during school vacations over the holidays and summer. Occasionally sympathetic neighbors or family friends would volunteer to relieve family members,” Lynn recalls. “I’d go to visit girlfriends from school, hang out in their room or go for walks – it was a totally different experience than I was used to, and I found it tremendously exciting to have all that freedom, even for a few hours.”
“On the flip side, though, when I returned to home and checked in with Scott, seeing him stare back at me with his piercing blue eyes when I said hello and held his hand, I knew our connection was real – ‘he’ was in that broken body and you couldn’t help pouring out love for him because his presence was so pure, so open. But there is no question his care was a constant family commitment every minute, every hour of every day,” recalls Lynn.
During the final four years that Scott remained at home, a new attempt was made to aid in his development with a series of physical exercises called “patterning” promoted by the Institutes for the Achievement of Human Potential, based in Philadelphia. The theory was that the undamaged portions of Scott’s brain could be programmed to take over the tasks normally performed by the injured areas. This brought an even higher level of time commitment by the family, as the exercises had to be performed five times a day, six days a week by at least three people. “We were taught, especially from my mother, that giving up on Scott was never an option,” Lynn remembers. “She would enlist help from the neighbors, community groups, our church and others to fulfill the task, and, of course, us kids. My dad was gung-ho in the beginning to try this new treatment, but eventually became totally disillusioned when little measurable developmental progress was made. This created a major rift between my parents.”
The rift eventually escalated, and the family fractured, Lynn’s dad filing for divorce and her mom suffering a nervous breakdown as the prospect of being unable to keep Scott at home became a reality. The only solution available was Scott’s admission to the NY State facility for custodial care in Rome, 45 minutes from Scott’s home in Liverpool. Lynn’s mom had to begin work full time out of the house, her dad remarried and moved to Florida with a new family. Ironically, it was not until decades later that Scott’s father saw him again, eventually accompanying Lynn for a visit after being stricken with Parkinson’s Disease and unable to make the trip on his own. Looking back to the day she realized Scott had left, Lynn is still emotional; holding back tears as she recalls the experience: “It was Valentine’s Day, and I came home from school with a card I made for Scott – but his room was empty. As kids, we weren’t told he was going, it just happened. As heartbreaking as it was for us, I think now as an adult how traumatic it must have been for him – not understanding why his environment had changed with everything he had known up to that point different with no familiar faces, voices, routine. I can only imagine how scared he must have been, and alone.”
The process of giving a child to the custodial care of New York State is a delicate balance between the child becoming a ward of the State and the parent, if wishing to stay involved, the legal guardian. Lynn’s mom insisted on that designation and sought to advocate for Scott’s care as best she could from day one. She and her mother – Scott’s grandmother – drove weekly to visit Scott at Rome State School, usually accompanied by one of the children. The conditions at that time were not the best, residents were kept stationary either in beds or wheelchairs for much of the day, sometimes sedated more than necessary to aid in behavior compliance. “My mom asked tough questions about Scott’s care with each weekly visit, monitoring everything from personal hygiene to prescribed drug doses, her legal guardianship granting her direct influence, which she passionately invoked. She was a great role model for me, as I would eventually share legal guardianship for Scott with her starting in 1984, and then take over completely when she passed in 2012,” Lynn states.
The Roberts siblings clockwise from top; Lynn, Eric, Scott and Mark circa 1967. Scott and his mother, Louise, in 2011; her last Mother's Day with him. The Roberts siblings clockwise from left; Lynn, Eric, Mark and Scott in 2021.
After graduating from Liverpool High School in 1975, Lynn went to Mohawk Valley Community College and received an associate degree in Human Services. “The actual degree included a ‘concentration in mental retardation’ – wording that is totally taboo today, but that’s what it was then,” Lynn muses. “While at MVCC, I interned at Rome Developmental Center, which had evolved from Rome State School, although I wasn’t allowed on Scott’s ward.” Lynn went on to earn her RN license from St. Joseph’s School of Nursing and recently retired as School Nurse at Liverpool High School.
Scott’s mom successfully petitioned the State in 1977 to move Scott to Syracuse Developmental Center so he could be closer to family.
In the meantime, New York State was gradually changing its approach to caring for challenged individuals. “The push was to leave the institutional setting behind in favor of an environment favoring resident ‘normalization’ – this eventually led to Scott leaving Syracuse Developmental Center in 1994 for a NYS group home on a residential street in North Syracuse, equipped with facilities and personnel to care for up to five individuals. It was here that Scott first met his roommate for the next two and a half decades – Danny Bracy, who is approximately the same age and shares the same developmental issues as Scott. “Over the years they have developed their own way of communicating and enjoying each other’s company,” states Lynn. “It’s so great!”
While there have been health scares over the years, Scott is still healthy at 62 years old and beloved by the staff at the residential home. Scott’s family has expanded to nephews and nieces and great nephews and nieces, all of whom visit regularly.
“Scott is a reminder to all of us in the family that giving up is not an option, everyone deserves a good life... and he gives so much back. It really is unconditional two-way love... and what can be better than that?” Lynn asks. SWM
