Tuesday, November 1, 2005

She Gets the Worm

Original: http://www.ascentschool.org/SHE_GETS_THE_WORMstory.pdf

She Gets the Worm
By Terri Manzione


I tiptoed downstairs, turned on the stove top burner and switched on my computer. The small numbers on the bottom right announced it was 5:02 am. My fingers rested on the keyboard until I found the strength to type.

"Nancy –

Last night Stuey asked for cookies. He ate too much at a Valentine party, so I said he’d have to wait until tomorrow. As I walked away I heard a thud, and then another. When I turned, I saw Stuey banging his head on the kitchen table…"

I ran to the kettle before the explosion of steam woke the house. My cold hands hugged the oversized tea mug as I returned to my computer.

"….I need your help. When is a good time to call?"

Nancy stirred Splenda into her coffee as her computer chimed, announcing my email. The screen’s glass reflected dark half moons beneath her eyes, badges of love for her children. Dr. Nancy Shamow is the director of Ascent, a school that educates twenty-four children with autism.

"What did you do when you saw him banging his head?" she replied at 5:16.

"I ran to him, held him until he stopped." Tears fell onto the keyboard.

"Can you and Stu meet me at my office today at 3pm?"

Nancy, Stu and I surrounded a small coffee table and discussed Stuey’s new behavior.

"There are two things you must do. The first is very difficult, but crucial. When Stuey engages in self-injurious behavior, you cannot react. Don’t touch him, don’t say anything. Your reaction will reinforce the behavior and it will worsen. If you ignore it, it will increase at first, but then it will stop."

"How can we ignore it? I can’t watch him hurt himself."

"He’s not going to hurt himself. When he hit his head on the table last night, did it leave a mark?"
"No."

"Stuey’s never been aggressive. He doesn’t want to hurt himself, he’s just acting on frustration. He didn’t understand when you told him to wait until tomorrow," Nancy explained.

"I wish there was a way we could teach Stuey the meaning of ‘wait.’" He’s never understood the concept," Stu interjected.


"There is a way. The second thing you’re going to do is set up a picture schedule at home. We’ll create pictures of everything in his day, and his week, so he can see what’s coming next. If he can’t have cookies at bedtime, he’ll see on the schedule he can have cookies with lunch tomorrow."

With endless meetings and midnight emails we created picture boards of everything in Stuey’s world. Nancy coached us through preparing, presenting and explaining the picture system to Stuey.

As I cooked dinner I heard the thud. Stuey was hitting his head on the kitchen table, unwilling to wait for the chicken roasting in the oven. I lunged toward him. I wanted to grab him, kiss him, beg him not to hurt himself, but Nancy’s words resounded. I spun around, pulling in my hands to cover my face, praying for the end of this daymare.

I waited until he stopped and placed his picture board on the table, pointing to a puzzle and to a picture of chicken dinner, explaining what he had to do. He walked to the basement. I heard the puzzle pieces scatter across his desk.

I sat on his warm seat at the kitchen table, leaned forward, and hit my head three times on the yellow oak, careful to use the same force as my son. Nancy was right. It stung, but left no mark.
After dinner I checked my emails.

"Didn’t hear from you today. How is Stuey?"

I responded and related Stuey’s behavior, but not mine.

"Good work. I know this is hard, but it will get better. I want you to write me every day until the behavior is extinguished."

I woke to the sound of birds frolicking in the rising April sun. I tiptoed downstairs, turned on the burner and the computer.

"Nancy –

Today marks three weeks since Stuey engaged in self-injurious behavior…"

"Terri – Wonderful. No longer a need to write every day. I’m here if you need me. Let me know right away if the behavior returns."

The bottom right corner of the computer blinked 6:15 am.

November, 2005

Sunday, January 25, 1998

Disabled, He Helps Others Beat Handicaps

Disabled, He Helps Others Beat Handicaps

By Marcelle S. Fischler


(Reprinted Courtesy of the New York Times:) 1/25/98

THE real issue for people with disabilities is their abilities. In an ideal world, people with disabilities will live simply as people, with the same opportunities as everyone else.

Making their abilities, not their disabilities, count, has been a lifelong mission for 85-year-old Henry Viscardi Jr. Born without legs, he spent the first six years of his life as a charity patient in a hospital ward for crippled children. An adviser to presidents, author of eight books and holder of 23 honorary doctorates, this Long Island legend founded the internationally recognized National Center for Disability Services, a multi-faceted, state-of-the art-educational training and research institution in Albertson.

The center is the fruition of Abilities Inc., a venture Dr. Viscardi started 45 years ago out of a West Hempstead garage with eight handicapped adults -- legless, armless, blind and paralyzed -- who were considered unemployable by traditional standards. Ten years later, Abilities, a competitive not-for-profit enterprise, had 475 employees building electronic components.

''It survived 30 years, but as the economy on Long Island changed we began to see we had new and greater responsibilities in our school, adult training program and research,'' Dr. Viscardi said. ''The opposition didn't really change.''

In 1962, he founded the Human Resources School, which was renamed in his honor six years ago, educating severely disabled children who otherwise would have to study at home or from a hospital bed. The Henry Viscardi School has 220 pupils in pre-kindergarten through high school, 40 percent of whom come from New York City. Others commute from Westchester and Rockland Counties.

While Dr. Viscardi retired as chief executive officer in 1981, it was his vision that enabled the center to be a model program. New technologies, long-distance learning capabilities and a website are allowing the trendsetting work there to be shared with the disabled all over the globe.

Educating and training thousands of people with disabilities, and inspiring them to lead active, fulfilling lives, Dr. Viscardi's work continues to have an impact on the lives of Long Islanders and their families. Last year, almost 300 people with disabilities were placed into employment on Long Island and an additional 327 found employment elsewhere with the center's help.

Last November, the center received $6.6 million in Federal grants for programs that will train and find jobs for more than 5,200 people with disabilities in eight states, including New York, over the next five years. The school is mostly financed by the state.

''Continuing to serve this cause as long as I can is the fulfillment of what I consider to be my destiny,'' said Dr. Viscardi, who was fitted with artificial limbs at age 27. ''We changed thousands of lives.I think it's a better world now than when it began. Far more disabled people are given the opportunity to be educated and to work.''

Dr. Viscardi and his wife, Lucile, have lived their married life of 52 years in a converted garage overlooking the Sound in Kings Point. The Viscardis have four daughters, nine grandchildren and became great-grandparents of twins last week.

During World War II, as part of the Red Cross, he worked with amputees at Walter Reed Hospital in Washington. He helped pay part of his way through college by refereeing basketball games on his stumps, standing three feet, eight inches high in orthopedic boots. He attended law school and worked as a tax auditor, in broadcasting and as personnel director of a large corporation before taking on JOB, Just One Break, a project finding jobs for rehabilitated men and women.

Dr. Viscardi, an avid sailor whose office at the seven-acre complex on Searingtown Road is a museum of photographs, mementos and diplomas chronicling his life's work, still swims with the children at the school's specially-equipped indoor pool every day. The campus includes an independent learning house for senior high school students to practice living on their own and preparing their own meals before graduation.

''We keep saying to these kids, ''There's a place for you out in that world. It's not going to come easy. You have to sacrifice and work hard. Prepare yourselves. Be prepared for rejection,' '' said Dr. Viscardi, who continues to give lectures and presentations.

Videoconferencing capabilities, a fully accessible television studio and conference area in the adjacent 7,560-square-foot Smeal Learning Center, which opened in September, allows the center to share its research and training techniques with universities and other institutions. The learning center, built on Abilities' former site, was conceptualized by Dr. Viscardi in 1952. The campus also includes St. Charles Hospital at the Dolan Rehabilitation Center, which provides medical rehabilitation services including physical, occupational and speech therapies, neuropsychological evaluations and counseling services.

''The center originally started as a place that was attempting to help people with disabilities get out of situations in which they were either isolated at home, or children who should have been in school were being kept at home because the education system wasn't working for them,'' said Edmund L. Cortez, president and chief executive officer of the national center. ''People who should have had jobs weren't working and were staying at home because employment opportunities didn't exist for them. The center created a kind of isolated haven for these individuals to go to school and get training to go to work with the eventual goal that these individuals would would become integrated within the community.''

Dr. Viscardi's program was created to prove that people with disabilities could work like everybody else at a time when institutions and separate schools were being built to isolate the handicapped.

''It was Hank Viscardi who said, 'But I can demonstrate that these people can work, can compete, can be part of the mainstream,' '' Mr. Cortez said. ''Throughout our history we have been committed to that original idea, that people with disabilities are simply people like everybody else. They have the same ambitions, the same dreams, the same feelings as everybody else. And on top of that they are people that we know personally. People with disabilities are our parents and our children and our friends. If a person, because they're getting older and can't walk as well as they used to, or hear as well as they used to or can't hold things as well as they used to because of arthritis, those are disabilities.''

In most ways, the Viscardi school is an educational institution like any other. Children chatter noisily in the cafeteria at lunchtime. Down the hall in a second-grade classroom, youngsters are studying the forests and working on their writing skills. Kindergartners play at the sand table in their classroom. The children have art, music, gym and computer. There is a black rabbit named Cocoa in the preschool classroom.

But there are standers stacked in the hallways, wooden boards for children who need the opportunity to be in upright positions during the day, a large red buggy to transport six nonambulatory preschoolers through the hallways and a wheelchair accessible playground outside the kindergarten door.

In the $600,000 technology suite, which was built with private donor funds and opened in October, 24 computer stations adapt to individual needs. Desk tops and monitors adjust to accommodate different-sized wheelchairs at the input of a special code, specialty keyboards come split in sections, tilt in any direction for a youngster with very short arms and come in smaller sizes to accommodate students without a large range of motion. There are trackballs instead of mice, pressure-sensitive keyboards and one designed for a student who manipulates it with his feet.

''In a lot of ways we are like every other school,'' said Dr. Ellen Bergman, superintendent of the school. ''Same types of books, same types of posters. We run readings, participation events.'' It is technology, she said, that has made a tremendous difference.

''Technology enables them to compete in the world on a level playing field,'' she said. ''Thanks to assistive technology, equipment that makes access to computers available to almost all of us and the actual use of technology, which allows you to travel the world without ever leaving your actual environment, our students for the first time are able to adapt to the demands of society and compensate for their disabilities on a very even playing field. They can use their intelligence, their talents, their creativity and it is quite remarkable, all thanks to technology.''

Children in the Viscardi school primarily have physical or medically related disabilities, such as cerebral palsy that leaves them little control over their muscles. Many have been in car accidents or broken their necks jumping into swimming pools. Six children at the center must use ventilators because of spinal cord injuries and have no control of anything below their necks, yet attend class and learn with their ventilator systems strapped to their wheelchairs. Many of the children with degenerative diseases need regular medical care through the day.

Eight-year-old Brandon Wolfbiss of Syosset, who has severe cerebral palsy, takes second-grade spelling and math tests with his eyes, using special visual boards, and practices navigating a power wheelchair operated with a chin switch down the school's long corridors.

Alan Muir, a vice president at Chase Bank's Long Island headquarters in Melville, graduated from the school as valedictorian in 1978. A dwarf who has some difficulty walking because of congenital hip and back deformities, he played hockey, baseball and football and was team manager at the then Human Resources School, none of which would have been possible in a public high school.

''The overall atmosphere gave you a better sense of yourself and self confidence,'' said Mr. Muir. He followed the Regents curriculum and went on to Adelphi University. ''Dr. Viscardi is probably one of the most genuinely compassionate and passionate people that I have ever met,'' Mr. Muir said. ''He is very determined, very upfront about a lot of situations. He tells you exactly what the situation is. He doesn't sugarcoat anything.''

Adults in the vocational rehabilitation program, most of whom come from Nassau and Suffolk Counties, have disabilities that interfere with their ability to work.

''We will have people with developmental delays, emotional disabilities, an inability to cope with stress, depression, those kinds of issues to the extent where it keeps the person from keeping a job,'' Mr. Cortez said. ''We train them to cope with some of those issues and at the same time to work despite those disabilities.''

The center's National Business and Disability Council program is designed to provide support to employers so they understand what they need to do to hire and effectively employ people with disabilities. The employment program offers training for laboratory assistants and in basic accounting skills, word processing, filing and retail skills.

''We try to pave the way for them so that they can hire that person,'' Mr. Cortez said. ''Once that person is hired, we try to help them make reasonable accommodations in a cost-effective manner. Very often, the employer thinks he has to spend thousands of dollars to accommodate this environment. Often the answer is you don't have to spend very much money at all. There are some very easy solutions if you just understand how to approach the problem.''

Despite the lowest unemployment rate in 28 years, Mr. Cortez said that close to 70 percent of people with disabilities of working age who wanted to work and had the capability of working did not have jobs. Eighty-five percent of the people who go to the center's training program get jobs, he said.

''That's an extraordinary record,'' Mr. Cortez said. ''It's unique. If you go to most training programs, you won't find statistics like that. What we're talking about is isolated to Long Island and to the places where we have programs. There are 49 million people with disabilities in this country. We're just touching not even the tip of the iceberg. Employers are hiring unqualified people to fill jobs because they can't find qualified people. Yet there's this pool of millions of people with disabilities who are looking for work who can't get jobs. What we need to do is figure out how to put the two together. They're looking for each other. They just can't find each other.''.

Despite the center's technological savvy, Dr. Viscardi is personally glad the computer age has passed him by. He doesn't even have a telephone answering machine at home.

''The computer age is pushing the horizons of total helplessness further and further back,'' Dr. Viscardi said. ''With the computer, you have so much potential to close the gap between the capacities of the individual and the demands of the job to be done. We're physically disabled because the doctors can define that. When it comes to occupational disability, as long as our physical capacities can meet the demands of the job to be done, we are not occupationally disabled. Both can be changed. I'm one thing without my artificial limbs. I'm quite another with them.''