New Hope for Retarded Children: By SARA D. STUTZ

Courtesy: Medical Miracles, from Readers Digest 1981. November.

From the frontiers of science and the far horizons of personal courage, these stories of medical triumphs and miracles will reaffirm your faith in the awesome powers of the human spirit. Dramatic victories and human triumphs.

Selected and edited by the editors of Readers Digest

Jordy is mongoloid.  When he was born, the pediatrician suggested that his parents put him in an institution.  Fortunately for Jordy, his parents ignored the doctor’s advice and took him home.  Within a few months they enrolled him in the Infant Development Program of the Exceptional Children’s Foundation in Los Angeles.  At three, he’s functioning so well that he has been accepted in a pre-school for normal children.

Linda, normal at birth, suffered massive brain injury in an auto accident when she was sent to Lanterman State Hospital in Pomona, California, where her parents expected her to be a crib case for the rest of her life.  But now, through special sensory motor training, Linda is learning to walk and talk again.  She’ll never return to normal, but she’ll soon function in a manner her family can manage at home.

At nine months, Christy was hospitalized with malnutrition and other evidences of parental neglect.  She was unresponsive and slow for her age.  Now, enrolled in the developmentally delayed infant education project at the Nisonger center in Columbus, Ohio, she is, at 13 months, feeding herself, crawling, and trying to talk.  It looks as if Christy is going to catch up.

Jordy, Linda and Christy aren’t miracle babies.  They are typical of the youngsters being served by infant intervention programs, a new and highly promising concept in education.  “With early intervention, many developmentally delayed children may be entered in regular classes of helped so that their disabilities require less extensive special services,” said James J. Gallagher, former associate commissioner of education for the handicapped, at HEW.

There are an estimated 2.2 million retarded persons in the United States. Dr. GeorgeTharjan, professor of physiology at ULCA, testifying before President’s Committee on Mental Retardation, estimated that as many as 50 percent might have been classes as “normal,” had they had the benefit of early training.  Not only could they be leading more satisfying lives, but also society could be spared the expense of their lifetime institutional care.  The cost of such care for a person from age six can be $300,000 to $1.5 million.

Babies learn from experience.  If they can take in what’s happening around them, and if their surroundings contain an average amount of stimulation, they develop to their full potential.  But, if their ability to absorb their environment is limited, they don’t get the experiences they need for mental development.

“Any infant suffers is his original capacity to inquire, to seek, to explore, is stifled.  Sterility of the early childhood environment, especially the absence of daily conversational exchange with the mother and others in contact with the infant, seems to impose a permanent limitation on intelligence,” noted John W. Kidd, former president of the Council of Exceptional Children.

When a profoundly retarded infant is put in a crib and given only the necessary custodial care, as was common practice until recently, he merely lies there, explains Clara Lee Edgar, the physiologist who developed a training program a lanterman State Hospital.  He has no way of making anything happens.  He cannot learn anything.

But if that same child is taken out of the crib and strapped t a scooter board on wheels with his toes hanging down on the floor, he can, with the slightest amount of wiggling, make the board move.  He seems to say to himself, “Hey, I can go somewhere.”  In subsequent periods on the board he learns to scoot across the room.  Eventually, he begins to hold his head up while doing it and even use his arms and hands to guide him.  He’s having experiences that will increase his intelligence.

Now, with the new intervention programs, which have sprung up in the past 15 years, babies with developmental delays, are being helped to have the experiences they need to make mental and physical progress.  Most programs are open to any developmentally delayed baby—a preemie, the baby having difficulty relating to people, the child of overanxious parents, the slow walker—not just children with known physical of mental impairment.

Babies enter programs through a verity of channels.  Some, usually low-birth-weight preemies or babies who have experienced unusual difficulties at birth, become part of a program while in the newborn nursery.  Many are referred to programs by their pediatricians or public-health nurses because of obvious medical conditions such as Down’s syndrome [mongolism], hydrocephaly [enlargement of the brain because of an abnormal drainage of cerebral fluid], microcephaly [abnormally small skull] of spina bifida [open spine].

Babies who have developmental problems evident at brith may cry all the time or they may be very ‘good.’  They might not cry or fuss for attention for a verity of reasons.  Without being neglectful, a mother would leave such a child in the crib all day except for feeding and changing him.  Yet this is the baby who most needs an environment that provides a maximum of social and sensory experience.

Directors of infant programs usually request mothers to bring their babies once a week to a center where special equipment is available, and where trained personnel can show them how to teach their babies.  Group activities are offered when babies are old enough to work on the self-help and language skills necessary for entry into pre-school.

At the Early Childhood Intervention Center in Dayton, Ohio, I followed a group of seven Mongoloid youngsters, one and-a-half to three years old, through a morning’s activities that would be almost unbelievable to the person conditioned the think of Down’s Syndrome as a totally incapacitation handicap.  After a period of free play with specially chosen toys to improve coordination, the children sang songs that helped them to identify their own names.  Then they divided up, one group going to draw with crayons and play simple ball games while the other had a lesson in identifying colors and matching shapes.  At snack time, all the children fed themselves.  In half-hour discussion periods, the mothers were told what the children would be learning next and how to reinforce it at home.

Rural areas, as well as cities, can have such special services.  In 1969, the Office of Special Education and Rehabilitation, part of the Department of Education, provided fund to develop a model rural program in Portave, Wisconsin.  “We expected the first to build a special school and bring in children for classes,” said David Shearer, director of the project.  “But we soon rejected that.  The area we’re responsible forcovers 3600 square miles of farms and villages.  Since youngsters with prblems may live 100 miles apart, we use ‘home trainers’ instead.”

The home trainers—women who either have had instruction in special education or are paraprofessionals—come once a week for an hour-and-a-half lesson.  They show parents how to conduct similar lessons the other days of the week, and leave any equipment that is needed.  Results?  The average child in the Portage project gained 13 months in an eight-month period.

Lanterman State Hospital at Pomona, California, is showing that there is no level at which children are ‘hopeless.’  Severely retarded youngsters—ones who are often crib cases for life—are trained so well that they can often return to their families.

Therapists are talking severely retarded children through the developmental stages that the normal child experiences.  For a verity of reasons, the retarded youngster cannot effectively use his body to deal with the world around him.  Research has shown that by improving his balance and other sensory motor skills the child can be helped toward more normal behavior.  I watched the most advanced group go to the dining room for lunch, where one bright-eyed little girl carefully set the table and served the rolls to her classmates.  It was hard to imagine that she had been a crib case.

Will the community be ready to accept these children?  The teachers and parents I talked with said yes, if the public is given adequate information about developmental problems.  I heartily agree.

My youngest child, Eric, is afflicted with Down’s syndrome.  He has been a much-loved member of the family ever since he was born.  Friends and acquaintances with which we have openly discussed his condition are interested in his development and are rooting for him in a truly heartwarming way.

Several years ago, when Eric was hot quite three, I took him on one of our routine trips to the supermarket.  I held his hands as he walked into the store for the first time.  As we passed through the turnstile, we were startled by the sound of loud applause.  The checkers were clapping for him and his small chest swelled with pride.

At that moment thought of what might have been crossed my mind.  Even with early stimulation and training, Eric is slower than the ‘average’ mongoloid child.   He could easily be a hopeless, unreasoning hospital patient instead of a lively happy little boy embarking now on a program of special public education.  Where he was born and the kind of advice we were given have made that much difference in his life.