New
Hope for Retarded Children
By
SARA D. STUTZ
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.
