Publication Date: Wednesday, December 21, 2005|
Out on their own
Out on their own
(December 21, 2005) Developmentally disabled learn to make their way in society
by Sue Dremann
Like many developmentally disabled people, Martel Moore has often been judged by what he can't do. A large tattoo on his left forearm eloquently states his response: "No limit."
"I had a dream about it -- a dream that there's no limit to what I can do," he said.
Since September, Moore has confronted one of the greatest challenges in his life; he is living independently.
Moore is part of a quiet revolution. Beginning in the 1970s, a shift in sensibilities -- and the law -- created an atmosphere of inclusion for the developmentally disabled. Less than four decades ago, they were marginalized or even shut away in institutions. But the promotion of independent living skills have transformed the dark age of alienation into one where developmentally disabled people have become participatory, taxpaying citizens.
A year ago, Moore lived in his parents' East Palo Alto home. He spent his free time watching action films and wrestling DVDs in his bedroom, only venturing out to attend his job at Sears, where he moves refrigerators and loads customer merchandise. He weighed an unhealthy 350 pounds.
But Moore is a decisive man. One day he vowed to lose weight and over the course of a year he dropped more than 100 pounds. "When he decides to do something, he just does it," said Andrea Throndson, Moore's living skills coach.
Last spring, he made another decision; he moved out of his parents' home. "I just wanted to see how it feels to live on my own," he said.
His mother, Wanda initially had doubts. "I was really uncomfortable about his moving out. He was never away for more than a day," she said. He had trouble reading; he didn't interact socially. He couldn't follow a string of instructions or perform tasks sequentially. But Moore proved such fears groundless. "He is handling his own business; he pays his own bills. He's becoming more social," she said.
Moore is a large man, 6-feet 2-inches tall, who weighs 280 pounds. His muscular arms are decorated with tattoos: the Chinese horoscope, his initials and the symbolism of his dreams. He is inclined toward silence and carries a serious demeanor. Throndson teases him light-heartedly about girls who sneak glances at him. Moore smiles sheepishly. Smiles don't come often, but when he brightens, his face softens and reveals a handsome shyness.
He doesn't have a girlfriend, but has his eye on actress Pamela Anderson. "He always goes for the blondes," Throndson laughs.
Moore received special education throughout his schooling and vocational training, but it didn't prepare him for life on his own. After high school, he became eligible for the Living Skills Program at C.A.R. -- the Community Association for Rehabilitation -- a Palo Alto nonprofit for the developmentally disabled.
With Throndson's help, he works on such issues as paying bills, building job skills, reading, shopping, preparing food and socialization. Moore takes the bus or rides his bicycle from his Midtown home to work on San Antonio Road, often an arduous journey in the pre-daylight hours or in the cold and rain. Someday, he hopes to drive. Throndson is helping Moore study for his written driver's test.
Moore doesn't cook, per se; he eats mostly hot dogs and lunch meats. But he doesn't eat sugar and now he shops for nutritional supplements at the GNC store.
Moore has a passion for weight-lifting, encouraged by his father. Throndson has used that interest to expose Moore to situations where he has to talk. At the Ross Road YMCA, he volunteers by helping other clients with body-building. He shows them how to use the machines, and helps with heavy weights.
"It felt weird at first, but I wanted to try something different," he said.
The work has greatly improved his social skills. "Four months ago, he couldn't talk to people without Andrea standing there," said Severin Marthe, a Ross Road YMCA fitness trainer. "He is a very gentle, good young man. ... I'm trying to teach him the subtleties of training."
Throndson hopes the effort will turn into a full-time profession, which would provide a better income for Moore. Jobs for the independent developmentally disabled are frequently menial, which means low pay. It took Moore and Throndson five months to locate a room he could afford on his wages from Sears.
Moore shares a clean, orderly home with two Stanford students and relatives of his landlord. He is a model tenant, Throndson said, even paying his rent a week early. To reduce the rent, Moore mows the lawn and rakes leaves.
A set of weights resides on the back patio, protected from the rain under a blue tarp. It is one of his few possessions. Inside, his austere room is immaculate. A powder-blue bedspread covers his neatly made bed and a wrestling poster hangs on the wall. He has a small desk, where he logs his daily activities in a ledger; a dresser, television and DVD player. Moore doesn't interact much with his housemates; his room remains his refuge, a place where DVDs are his greatest companions.
"Living on your own isn't easy," Moore said. "It's a challenge to be away from my family's home." But he likes it, he added.
Loneliness is one of the greatest challenges for independent-living developmentally disabled people, C.A.R. Executive Director Lynda Steele said. "They can have real difficulty making friends. There's a sense of isolation. It's one thing to be living in the community and another to be accepted. ... Without parental support, there is a period of adjustment."
The transition is often difficult because loving parents often compensate for their children, Steele added. But having a job helps build self-esteem. "The day they get that first pay check, you can see they feel they've made it."
Tracey Jarrett has lived independently in Palo Alto for three years, but it is not her first time alone. For seven years, she lived in Taft, a small oil town in the San Joaquin Valley west of Bakersfield.
Attending Taft College -- a higher-education center for independent living skills -- Jarrett learned safety, cooking, life skills, personal friendship, shopping, money management and job experience classes.
"We had a horrific beginning," said her mother Laurie, a C.A.R board member. When Jarrett -- who has Down syndrome -- was born, doctors said she should be institutionalized. They said she would never progress beyond eating soft foods, would never read and would always have a protruding tongue. (Down syndrome patients have a normal-sized tongue in a smaller head, causing protrusion.) Jarrett didn't even have the skills to grasp a penny between her fingers.
But Jarrett's parents refused to give up. They increased her spatial awareness through exercises and constant physical contact; exposing her to different textures of foods, flavors and smells. Laurie Jarrett rubbed the area around her tiny daughter's lips in circular motions to increase nerve stimulation and taught Tracey how to keep in her tongue.
"It was years of stimulation. ... It's slow. You learn over the years, there are peaks and valleys," she said.
The Jarretts moved to Palo Alto in Tracey's first few months of life. Tracey's father, an executive at Intel, was transferred to the Bay Area. C.A.R. became a life-saver for the family, Laurie said.
Laurie said the C.A.R. executive director at the time, Ralph Scheer, told her, "Let's label jars, not people."
Tracey learned to tie her shoes. She cooks simple foods in the microwave. She reads and writes out her own shopping list in a neat handwriting. Laurie Jarrett remains her conservator, making all legal decisions on her daughter's behalf, but Tracey does her own money management.
She learned to live independently so well, her parents moved to China for four years when Intel again transferred Tracey's father. Tracey stayed behind, lived in an apartment complex, took classes at Taft and worked in a cafeteria.
Ensconced in her first apartment, Tracey told her protective mother, "Mom, I make my own decisions now."
"Tracey is part of the first generation where citizens with Down syndrome are included," Laurie said.
Mainstreaming -- now called inclusion -- began in 1975 when then-President Gerald Ford signed the Individuals with Disabilities Education Act, which guarantees the disabled the right to a free and appropriate education from age 3 to 21, Laurie said.
"Another reason inclusion is so successful is that the Lanterman Act, (passed in 1969), mandates tax money in California through the Regional Center System to provide programs and services for the developmentally disabled," she said. Regional centers provide each client with a case manager to put together an individual program plan.
Tracey Jarrett has become an advocate for the independently living developmentally disabled. She has spoken before the National Down Syndrome Congress, lobbies for new transition-to-independent-living programs on college campuses and served as a representative to the president's Commission on Mental Retardation.
An avid swimmer trained at C.A.R., she has participated in the Special Olympics and has been the top fundraiser in the C.A.R. Aquathon. On her 33rd birthday, she received a San Andreas Regional Center Service Above Self Award for her contributions to the disabled community.
Tracey Jarrett's success is no surprise to Steele. "Who am I to say what's possible in the future? I wouldn't have thought (many things) were possible for some of them when they were younger. But I have seen that in our professional arrogance, we can be proven wrong over the years," she said.
Small and outgoing, Tracey Jarrett exudes instant warmth and humor upon first greeting. Jarrett works with C.A.R. coach Regina Grijalva, cooking together on Thursdays, and shopping at the Midtown Safeway. She enjoys music -- especially Madonna and Simple Minds -- reading, writing, watching comedies and family movies. She maintains an active social life, partaking in social activities at C.A.R., her church, and with her weekend buddy, Alice.
Part of her success lies in creating an ever-widening circle of friends who offer support, Laurie Jarrett said.
Two days each week, Tracey works part-time in the concession area at Century 16 Theatres in Mountain View with other developmentally disabled adults under Grijalva's supervision. "My favorite job is making the hot dogs and passing out soft drinks," she said.
On Veteran's Day, Jarrett stood behind the concession counter, amid the bags of popcorn, cotton candy and soft drinks. A distracting cacophony of video games blared in the background, but Jarrett remained unflappable, filling orders for soft drinks.
"When she first started the job, she needed a lot of prompting. A set routine really works for her," Grijalva said.
For Grijalva, patience is the key to success with her clients. Sometimes, it takes a while. Grijalva has been working with C.A.R. clients for seven years. She knows well the peaks and valleys of working with her clients, of the frustrations and hardship her clients face as they struggle to be independent.
But her eyes sparkle when she thinks about their successes. "It's all about being patient. You can tell you are making a difference in their lives."
Staff Writer Sue Dremann can be reached at firstname.lastname@example.org.
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