By Scott Brinton
As time passed, Natalie started to worry about Robert's development. At two pounds, he had at birth already fallen behind other children physically. His mother, though, could not be sure of his cognitive growth. She could only wait and watch and hope.
Robert's twin, Richard, met each developmental milestone on time, but Robert did not. Robert was later diagnosed with mental retardation with autistic-like tendencies and cerebral palsy, which causes stiffness and weakness of the arms and legs.
Over the years, Richard took part in the activities that most young people do. "He went to school and had girlfriends," says his mother. Robert, however, could never lead such a life.
Still, Richard and Robert grew close, and Richard became highly protective of his brother, including him in his circle of friends. Unable to go it alone, Robert would "grab onto [Richard's] shoulders and walk behind him," says their mother.
Now, Richard and Robert are 26 years old, and Richard is pursuing a master's degree in occupational therapy. Natalie Zbythiewski is 59 and, in recent years, she has faced the difficult question that many parents of people with disabilities must address -- how do you care for your adult children as you yourself age?
Fortunately for her and Robert, she found PLUS (Programs for Living, Understanding and Services for Autistic and Autistic-like Adults), a non-profit, social-service agency providing group homes for adults with autism.
The agency started in 1986 with one home in Uniondale and has expanded to include homes in East Meadow, Levittown, North Merrick and Seaford, as well as a central office in Wantagh. PLUS homes draw people from throughout Nassau and Suffolk counties. Robert Zbythiewski, originally of Huntington, now lives in the Seaford home, where he is thriving, says Natalie Zbythiewski.
PLUS runs with a $4.5-million annual budget, which is funded largely through Medicaid. It boasts a total staff of 115 employees, including a team of psychologists, social workers and nurses.
Zbythiewski says PLUS offers more than shelter for residents, who are known in the group-home field as "consumers." It provides compassionate care and continuous mentoring for them.
Zbythiewski should know. She is not only the parent of a consumer. Eight years ago, she also became supervising nurse for the five PLUS group homes.
Above all, people with autism "need understanding," says Zbythiewski, who is the mother of six.
The Herald recently visited the North Merrick PLUS home, a one-story, ruddy-red ranch that sits in a quiet, residential section. It is like most any other home, with a living room, dining room, kitchen and bedrooms for consumers.
Subhead: What is autism?
Estimates are that 500,000 people in the United States, or 1 in 600, suffer from autism. It is a neurological disorder whose cause remains unknown. Recent autopsies suggest that it results from irregular clumping of cells in areas of the brain that control speech and social skills, says Terri Cancilla, PLUS executive director and a registered nurse.
People with autism often do not speak. If they can, they often do so in staccato clips. Think Dustin Hoffman in "Rain Man." His character had autism.
When asked what he likes to do at PLUS, resident Eddie Bonds, 36, says, "I like to go to show. Sometime, I like to sing. I like to dance, Rudolph the red-nosed reindeer." Then, he reminds himself, "Eddie, you behave yourself."
He quickly returns to his list of favorite activities, stopping at times to eat his dinner of meatloaf, rice and salad. "Special Olympics. I get a medal, and then we had pancakes, and then we had coffee," says Bonds.
Resident Stuart Maher, 33, also speaks about what he likes to do. "I like to play with toys. Tinker toys. I like to sing."
He is asked what he likes to eat. "Apple pie."
"What do you buy at the supermarket [where he helps shop for the home]?"
"Food."
Then, Maher adds, "I like to build a radio tower."
Many people with autism deal poorly with change, such as Hoffman's character. At PLUS, says Cancilla, some residents are thrown off if the bus that picks them up for programs is a different color.
People with the disorder can be mentally retarded, such as PLUS residents. They, however, can display high intelligence. Such people are known as autistic savants.
Hoffman's character was a mathematics genius. Like most people with autism, though, he lacked social skills and displayed the disorder's "ritualistic" behaviors, such as rocking and hand clasping. People with autism might also be obsessive-compulsive, continually checking to make sure that a door is locked or that a stove is turned off. Still other people with the disorder might show only mild symptoms and fit into society unnoticed.
"No two cases are alike," says Cancilla.
Suhbead: Meeting consumers' needs
At the North Merrick home, two residents share one bedroom, but that is about to change. PLUS recently received a $230,000 grant from the county Department of Housing and Urban Development to build an extension onto the house, which will give each of the home's 10 consumers his or her own bedroom.
During summer, residents can swim in the in-ground pool out back. Year-round, they can also take part in field trips to supermarkets, bowling alleys or restaurants. Five days a week, they attend "daily-living classes" run by organizations such as the Association for Children with Learning Disabilities.
"We provide a living environment that is normalized in a community," says Cancilla. "They [the residents] live as a family. We try to meet their needs in terms of what they like."
Indeed, the PLUS home is a world away from the lifeless institutions in which people with autism were housed as late as the 1960s and '70s. There, they were given food and powerful neuroleptic and psychotropic drugs that essentially tranquilized them. Many times, they lived in squalor, such as at the infamous Willowbrook institution.
At the time, people with autism were also treated as insane. Children with the disorder were often diagnosed as schizophrenic. In recent years, autism rates have climbed. Cancilla believes that is because far fewer people with the disorder are being diagnosed as mentally disturbed.
Many PLUS residents who came from institutions during the 1980s knew nothing, not even how to open a door, says Cancilla. But with time and love, they learned. One woman needed two years to grasp how to open a door.
PLUS counselors began by simply allowing her to touch the door handle, then reinforcing the behavior positively. She liked having her nails done, so that became her reward for touching the door.
"At some point, the reinforcer became I can open this door, and I will go into the other room," said Cancilla.
Karin Myers is an occupational therapist who works closely with PLUS consumers to teach them daily-living skills, such as opening a door, dressing or brushing their teeth. When residents learn a new skill, Myers says, "You feel very good. You feel like it's worth your work. It's very rewarding."
People with autism often appear aloof from their surroundings and other people. They, however, feel emotions such as joy, sadness and frustration like anyone else, says Cancilla.
They simply cannot express their feelings with speech. So, they must resort to other means. Some use sign language. Others point to pictures in a book. And some, incapable of any communication, might use a whole-body approach to expression. For example, if their ears ache, they might bang their heads against a wall out of pure frustration.
Patience, notes Cancilla, is key to understanding residents' wants and needs, which at first might appear incomprehensible.
Art and music therapy play an important role in consumers' treatment, as they provide alternative forms of expression. And some residents become outstanding artists, creating exquisite papier-m‰ch
