A better world for retarded children
One Canadian child in 33 is "retarded"—fated, until recently, to live behind a barrier of ignorance and fear. Now fresh knowledge and new methods are breaking the barrier
Throughout history one of the stumbling blocks to better health has been the reluctance of people to discuss some of the more frightening diseases. Advances against cancer, tuberculosis and venereal infections came only after they were brought into the open. The most recent conquest of ignorance and fear concerns perhaps the most tragic of victims: retarded children.
Some parents still regard this affliction as literally a fate worse than death. “I’d sooner break the news to a mother that her child has fatal leukemia than that he will never be normal,” one doctor on the staff of Toronto's Hospital for Sick Children recently admitted. A Kitchener, Ont., pediatrician went further: “I’d rather have to tell parents, ‘Your child is dead.’ ”
It is all the more dramatic, then, that the plight of "children who will never be right” is being shouted from the housetops by the very people who once kept it a melancholy secret— thousands of parents of retarded children.
This month Canadians will learn how complete has been the change from unhappy silence to open challenge. The parents, banded together as the Canadian Association for Retarded Children—an organization that started with a Toronto grandmother’s refusal to accept in lonely resignation the affliction of her orphaned grandson—will hold Retarded Children's Week to focus public attention on their problem.
The parents' funds are meagre for the enormous job they have set themselves; their best hope for their children falls pitifully short of the spectacular victories over such diseases as polio and diphtheria. But they know from bitter experience that any improvement is a Godsend both to the children and to their beleaguered parents. They know. too. that one of the most important ways in which they can help their children climb one short step toward normality is to help the public understand the facts of retardation. Retarded Children’s Week is the first nationally organized drive by parent-crusaders to sweep away some myths, stifle a number of superstitions and generally inform their neighbors on the subject of retardation.
The most pertinent questions are: What is retardation? What causes it? How many does it affect? Finally, what can be done about it?
Retardation is defined by one authority as “all degrees of mental defect arising from arrested or imperfect mental development as a result of which a person is incapable of competing on equal terms with his normal fellows or managing himself
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WHAT A GOOD HOME CAN DO
WHAT A GOOD SCHOOL CAN DO
A better world for retarded children
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“The list of causes indicates that retardation is something that can happen to anybody1”
or his affairs with normal prudence.”
But the definition must be translated in real life into terms of children living behind a mental barrier that sets them apart. Retardation is a little boy with the slanting eyes and stubby neck of the Mongoloid, sitting alone and bleak because other children won’t play with him. Retardation is a tall, well-built youth painfully enunciating a simple sentence under the patient direction of his teacher. Retardation is a tiny girl with a head so unnaturally swollen that she cannot raise it from the pillow in the crib where she has spent all her short life. It is a ten-year-old boy who is so handsome that you don't notice at first that he has the mannerisms of a threeyear-old. In some ways this is the most tragic form of retardation. In one typical case the child's parents clung so strongly to the unattainable hope that he would suddenly "break through" and become normal that they would not allow him to be photographed. When he “gets well" they do not want pictures to remind him that he was once retarded.
But that attitude is now an exception. So completely have the twelve thousand members of the Canadian Association for Retarded Children rejected the old tendency to hide or "protect" their children that they become annoyed when what they call “retarded newspapers” paint out the features of children in photographs used with articles on the association's activities.
One on every street
Doctors usually divide retardation into three categories. Mildly retarded children are those with an IQ of fifty to sixty-nine and a maximum mental age of ten years. Moderately retarded children have an IQ of twenty to forty-nine and a potential mental age up to eight years. Severely retarded children range in IQ from zero to nineteen, and their mental age will not exceed three years even in adulthood.
What causes retardation? No fewer than seventy factors have been blamed by medical investigators: they include such things as injury during the process of birth; a mother's attack of German measles in early pregnancy. A premature child is more likely to be retarded than a full-term baby. Jaundice, high fever and meningitis during infancy are added dangers. Lack of oxygen, either during birth or through accidents in later life, such as near-drowning, can change a normal individual into a retardate in a few seconds.
Geneticists maintain that both the first child of a very young mother and a child born of a relatively old mother are more than usually likely to be Mongoloid retardates, due to defects in the genes which determine children’s characteristics. Research indicates that forty percent of Mongoloids are born to women over forty years of age. The list of causes indicates that retardation is literally something that can happen to anybody.
How often does it happen? A few years ago an old family doctor, trying to comfort a mother and father to whom he had just broken the news that their child was retarded, remarked: "Don't feel that you're alone in this—there s one on every street.”
That was cold comfort', but it was no figure of speech. Throughout Canada, in any street on which thirty-three children live, the grim law of averages condemns one to retardation. The incidence of retardation—three thousand in one
hundred thousand births—is far greater than any other affliction of childhood, and twice as frequent as the next four disabilities combined. Of one hundred thousand children, seven hundred get rheumatic heart disease, three hundred
and fifty develop cerebral palsy, two hundred become blind and in pre-Salk vaccine days three hundred suffered crippling polio.
As recently as five years ago doctors estimated that one to two children in
a hundred were retarded. The apparent increase to three percent is, ironically, largely due to the formation of the Canadian Association for Retarded Children, “in our early days, whenever we broadcast for help what we got were more parents of retarded children coming forward," explained an association official.
Today it is estimated that there are half a million retarded persons of all ages in Canada. The proportion of children is higher than in the rest of the population for two reasons: the in-
creased postwar birthrate and the devel-
opment of antibiotics and other medical advances that save the life of many a retarded baby who otherwise would die early.
What can be done for retarded children? The first fact that parents must accept is that retardation is a condition, not a disease, and it is unrealistic to talk of a “cure.” On the other hand, specialized, patient training can increase a typical retarded child’s capacity to function. This improvement does not represent an increase in the child's mental equipment; rather it is the attainment of
his true level of intelligence, which may have been submerged by poor environment or lack of expert training.
Training can change many a retarded child from being a crushing mental and physical burden to even the most loving and sympathetic parents, into a reasonably disciplined member of the family. The child himself is, of course, the chief victim of his affliction. But nobody who has not had close contact with a family that includes a retarded child can realize the effect on the parents.
From the moment they receive the
dread news, the parents are on the brink of a private hell of fear, remorse, frustration and guilt. Often they go to great lengths to pretend the misfortune hasn’t really happened. The doctor may be wrong—the doctor must be wrong. The first impulse is to look for another doctor who will agree with them. Sometimes they spend thousands of dollars and agonizing months shopping around for the words they want to hear and never do. They punish themselves with questions. What will our friends think? Why has God done this to us? What will happen to our child when we die? Is there “bad blood” in the family—dare we ever have another child?
The answer to the last question is that countless parents have healthy children after a retarded child, since the majority of retardations are accidental. Even when inherited genes are involved, the odds are great that the defect will not recur. If a genetic expert is consulted he will never order a couple not to have a child. He will explain the degree of danger and let the parents decide.
The physical burden on parents is heavy. Retarded children often are restless and disturbed, unable to concentrate on any activity for more than a few seconds at a time, and require constant attention. Many spend sleepless nights wailing and fretting. The care of a retarded child has led to nervous breakdowns, broken homes, neglect of other children in the family.
It was against such problems that Mrs. Victoria Glover protested in 1948, and helped add impetus to a revolution in the dark world of retarded children and their parents. Mrs. Glover, bringing up an orphaned retarded grandchild, wrote a letter to The Toronto Star, suggesting a meeting with others in the same position as herself.
Thirty parents replied, and seventy turned up at the first meeting, held in the basement of Carlton Street United Church.
"At first we just sat and talked to each other,” one parent recalled. “It was wonderful to be able to talk without having to explain or watch what you were saying. It was helpful, too, to find that there were others in the same position and you were not alone in the world with your tragedy. We talked through a few meetings and then decided to act. We formed an association for retarded children.”
One of the association’s early activities was akin to that of Alcoholics Anonymous. Members frequently got calls from parents wrestling in loneliness with their dilemma. Many new members were enlisted in this way, and providing a sympathetic ear for distressed parents is still one of the informal services of the association.
Once the dam of silence was broken, parents of retarded children came into the open all over the country. In 1955 representatives of provincial associations from coast to coast met in Toronto to form a national body, the Canadian Association for Retarded Children. At the association’s first annual meeting, held, in Calgary this year, one hundred and sixteen branches were represented.
As if to make up for lost time, the organized parents of retarded children have been moving with explosive energy. Before they went into action, there were pitifully few facilities for the constructive care and training of retarded children, and those few were hopelessly overcrowded. One was the residential school of the Ontario Hospital at Orillia, founded in 1876 with the sad name, “Asylum for Idiots.”
Some public schools held auxiliary
"opportunity classes” for mildly retarded children. But children with an IQ of 50 or under were considered "ineducable" and not eligible - for these taxsupported special classes. Thus the parents of perhaps half of Canada’s retarded children, although they paid the same school taxes as more fortunate parents, received no help.
The organized parents have radically changed all that. In tackling their problem they made two interesting discoveries. First, that the attention with which politicians listen to pleas for action depends on the number of people doing the pleading. Second, that once the case for the retarded child is taken to the people, the people respond with warm generosity and understanding. Seldom now do the parents hear of anyone voicing an old attitude toward special efforts to educate the retarded: "Why bother, as long as they're well cared for? They will never be normal anyway.”
Dr. L. A. Kerwood, superintendent of British Columbia’s Woodlands residential school, has this answer for persons in whom lingers a negative attitude toward the retarded: “Any society that fails to care in the best way it can, for even its weakest members, is sick. To fail to do all we can for the handicapped is to make a judgment we have no right to make.”
The extent to which Canadians have proved they care has gratified and even amazed the organized parents. Three years ago a fund-raising campaign in Toronto brought in four hundred thousand dollars. The greatest part of this money has gone into the establishment of recreation programs, day camps and special association-operated schools for under-fifty-IQ children to supplement the public schools' “opportunity classes” which have themselves greately increased in number.
The parents now operate eighty-seven schools across Canada, giving training to two thousand children. The schools range in size from a small classroom organized by Mrs. A. B. Perlin in St. John’s, Nlkl., to the 350-pupil Beverley Street school in Toronto, housed in the mansion that was once the home of Sir George Brown, founder of the Toronto Globe.
Toronto children are taken to and from Beverley Street by a fleet of taxis at a cost of sixty-four thousand dollars a year, which the parents claim is the biggest single taxi contract in the city. The cost comes out of the monthly fees paid by the parents, but Metropolitan Toronto municipal governments and service clubs make grants to help parents who can ill afford the outlay. The taxi drivers have become touchingly attached to their small passengers, and regularly take up a collection of fifty dollars a month among themselves for the association's treasury.
The teachers of retarded children are careful to point out that their pupils differ from normal youngsters only in degree. They know joy and sadness, the frustration of failure and the glow of accomplishment. They delight in games —but must be taught patiently how to play. Hula hoops are as big a hit with them as with other children. Teaching them academic subjects and handicrafts is a meticulous, repetitive and time-consuming process. But the reaction of parents to an utterly heedless child who gradually assumes the characteristics of a "person” is a priceless reward.
"Sometimes retarded children are overprotected at home by parents who
hesitate to discipline them because of their condition," says Mrs. Lucy McCormick. the firm but friendly principal of the Beverley Street school. "We find they accept discipline and are much happier when they learn to get along with others.”
Some retarded children show flashes of brilliance. Mrs. McCormick cited one little boy who is an accomplished mimic. "He repeats conversations I have had with him. taking both voices, with startling realism.”
One patient at Orillia school has an
almost photographic talent for reproducing complex drawings. Once his instructor asked him to copy a drawing in two parts, doing the second half without reference to the first, several days later. The two halves joined to make a perfectly fitting whole.
The education of retarded children is now being underwritten by expanding provincial financing and facilities. "It's true that we urged the authorities into action," said one association official, "but it's also fair to say that once they understood the need they have become more
than willing to help us in our work.” New' hospital schools for residential care of retarded children have been opened at Moose Jaw, Sask., Calgary, and Smiths Falls, Ont. Two more are in prospect for Ontario. Each western province now has a government - financed school. In Quebec. Mount Providence School at Rivière des Prairies was built with provincial-government help especially for French-speaking Roman Catholic children. The only residential school in the Maritimes expressly for retarded children is at Truro. N.S. Most existing
schools are overcrowded, and some areas lack any school. This has put the building and staffing of new schools high on the association’s list of demands to be made by local, provincial and national bodies.
Probably the development that gives greatest satisfaction to the parents of retarded children is the beginning of a program that promises lifelong care and security — and a degree of self-reliance undreamed of a few years ago — for their children. This development is the sheltered workshop for “postgraduate” training. Here, after they leave day school, growing-up retarded children are taught simple routine jobs and some have developed enough skill to take "outside” jobs in industry. Others, although they will never be completely self-supporting, work in the sheltered workshop and earn money according to their output. At the pilot workshop in Toronto Miss Jessie Manson, the director, now supervises thirty trainees folding and packing hairnets for a commercial company on a contract basis.
"We hope to show industry how some of these people can help them.” says Miss Manson, “just as the sponsors of job programs for the crippled and blind have been able to educate employers to hire their handicapped people."
New ideas; new methods
The long-range program of the parents visualizes a number of residence-workshops across Canada where retarded children as they grow up can live happily and occupy themselves usefully and even profitably.
But the parents’ concern is not only with the present, with retarded children already born. Part of the program is to sponsor and inspire medical research aimed at preventing retardation before it happens. In view of the wide variety of eaüses of retardation, this is an enormous job on an extremely wide front. Yet one example shows that it can be done. The presence of an inherited RH factor in a baby’s blood has been identified as a cause of retardation. A modern technique of replacing the blood by massive transfusions of normal blood has saved many an infant from retardation and bestowed normal physical and mental health.
In the United States, research into prenatal nutrition as a factor in retardation is being pursued, as well as investigation of a dozen other aspects of the affliction. In Canada a start in full-time research is soon to be made. The Ontario Junior Red Cross has given the Ontario Association for Retarded Children sixty thousand dollars to establish the first research professorship in mental retardation. The professor and the university in which he will work are to be announced soon.
The balance sheet of the organized parents of retarded children, which had its first small entry just ten years ago, now adds up to a better life for thousands of handicapped children in a world made friendlier to them because it understands their problem. And, in a new column, a fresh entry promises tomorrow’s children and their parents the hope of freedom from the misfortune that separates its victims from a full life, -fa
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