Not Like Other Children
- Author:
a Mother
We started on our career as parents exactly as thousands do every year; a little apprehensive, tremendously happy, unaccountably proud and more than a little at a loss. But whereas in the usual case the child manages to survive the first fumbling, weeks, thrives and learns and becomes wholly a joy, our little son did not thrive or learn, and remained for nine months a worry, as well as a joy. He did not gain properly, he did not eat, he did not learn to play or sit up alone as he should. The only thing he did on schedule was to produce teeth at the right times. When, at nine months, we took him to another doctor, we found that he had not learned, had not thrived for the reason that he was feeble-minded. He would never be like other children. If he lived to grow up, he probably could never earn even * Reprinted from ” The Parents’ Magazine “, 52 Vanderbilt Avenue, New York 17, by kind permission. a part of his living even in a special home. No, his trouble was not hereditary. We could and should have other children.
The verdict was so overwhelming, so final and complete, we felt as though our baby had died. He was, we felt, so lost to us. We thought of the plans we had made for him, of the books we wanted him to have, the music we would help him know and love. It hurt us to realize, now, that none of this could be.
Then, gradually, it dawned on us that most of our bitterness and agony were for ourselves. We began to see that there were compensations. If our little son was never to know the heights of life, he also would never know the depths. Perhaps he would have to go through his life, provided he lived past infancy, with a child’s mind iij a man’s body. But he also would have a child’s heart, and a child’s happy faculty of living in a world where play is the reality. Not that we would not have given anything to have made him whole. But since it must be this way, we could see a glimmer, at least, of a silver lining. Perhaps our experience will have value for other mothers and fathers. I know that when we were groping for the light, back in the beginning of our trouble, “we would have been glad to know of someone else’s experience, if only to help us realize that we were not alone with a different child. Gradually, because we had to, we began to get used to the idea that our child would never be normal, then we began to remember other things the specialist had said that dark afternoon. We came to understand the word ” microcephalic ” ; found that it was a term which meant that our child’s skull was, through some error in prenatal development, too small ever to house a normal brain. Just as there are, occasionally, children who are born club footed, or without an arm or hand, so our child did not have a skull of the right size. It was nothing we or any of our ancestors were responsible for and there was no birth injury. In fact, nobody knows what causes such a thing, and so it cannot be foretold or prevented. Nor could it be cured. But at any rate, there seemed no reason why we could not have other children who would be normal.
There are all sorts, degrees and types of mental retardation carrying with them their differences in appearance as well. Our son is very small, so that his small head is not noticeable to the casual glance. People who don’t know him think he is normal; often we have been complimented on his appearance, because he not only acts six or eight months younger than he is, he looks that much younger. We are thankful for that blessing, and we know that many parents must choose between not taking a child out with them, and braving the curious, pitying stares of the passers-by. There are other differences between our problem and that of others; our baby is docile and sweettempered and fairly easily trained; we have no other children to consider. In spite of the differences, however, I feel that in some ways all parents with defective children are faced with the same decisions and perplexities. Arranging for the child’s future is one of them; training, even though it may differ widely to fit the individual cases, is another.
When I searched for books to help in the care of a mentally defective child, they were not available to me. The best the library could offer was books on mental development containing tests, such as Dr Arnold Gesell’s Mental Age of the Preschool Child. Layman that I am, and with only average education, I found that book helpful. Reading the tests and the conclusions drawn, and applying some of the same tests to my youngster, I could come fairly close to the mental age of the child. As he is very young, his age was reckoned in months rather than years, but the same idea could be worked out whatever the child’s age. After using the tests I could decide on my plan for training according to his mental age, not his actual age. I would try to get him to do the things he should be able to do according to his mental age, neither more nor less. Other books on child care helped me from there on.
However, my baby was not only about six months behind his normal development, he continued to develop at a much slower rate of speed than the normal child. At a year and six months, mentally, he showed a gradual development, but at a much slower rate than a normal six-months-old child. I had to learn not only to set the clock back, but to slow it up. This was hard, almost impossible, at first, but now that we have grown used to the idea, we find we accept it completely. What is more, our friends do too. It is as though our baby were ageless. That point of view is a big help in our effort to accept him as he is and to be happy.
But the first job was to improve my baby’s physical condition and that meant building up his appetite. He was badly undernourished and underweight and he had skin trouble. In spite of my adherence to the rules of baby care and feeding he did not thrive. However, he rarely had upsets or colds, and his teeth erupted painlessly and at the proper time. I began to wonder if with patience and the help of all I would find in books on child training, feeding, food habits, and other related subjects I could help him to build a strong healthy body. A few persons to whom I mentioned my problem said quite frankly that they thought I was taking a good deal of trouble for nothing. ” It would be better if he didn’t live, poor little thing,” they said. I was suddenly thoroughly angry. Who can say which life is of use, or importance ? Was I to neglect the health of a child in my care, even perhaps shorten that life by not doing what should be done, because I could not see of what use that life would be ? My job was to care for my child, to help him to be strong and to grow. So I set about making a strong body out of an ailing, weak one. It called for the hard, concentrated effort I needed to pull me through the heartache and bitterness.
My baby was taking orange juice, cod-liver oil, cereal, vegetables, milk, all as he should? but in such minute quantities that he barely stayed alive. He was also exceedingly nervous and tense; his legs actually did not relax enough at any time to lie apart, he held them together and held his arms at his sides in an unnatural, strained posture. Even in sleep, he did not relax entirely. I felt that his need was for rest, sleep, quiet and more quiet, and so arranged his schedule fairly rigidly and saw to it there was little or no outside stimulation. At the same time, I followed the advice of the authorities on feeding a reluctant child?don’t coax, urge, or force. Don’t show any emotion. If he eats nothing, remove the food and say and do nothing. When a child is just skin and bones not showing any emotion, when he persistently refuses his food is difficult, but it can be done.
The doctor prescribed thyroid extract for a while, and we tried various wheat-germ compounds to try to stimulate an appetite. It all seemed fruitless, but suddenly, for no apparent reason, the baby began to eat. He not only increased quantities but accepted a much wider variety of food. I cut his meals down to three a day, and held my breath for fear the spurt of appetite would disappear. It didn’t. At twenty months he eats nearly what any child of that age would, except that he has some trouble handling food that isn’t smooth, and he does not hold his bread or toast and eat by himself. When he began to have a better appetite his tenseness disappeared, whether because of improved nourishment I do not know. Today at twenty months he is relaxed and supple and as healthy as any child his age. Less than a year ago the doctor predicted he would die before his second birthday. Today he is stronger, more resistant to colds and infection than a good many of his contemporaries. His teeth are strong and straight and they came in easily. His colour and skin texture are excellent. His sleep is sound and more regular. We are proud of his strong, straight little body, and we cannot feel that our efforts and patience were wasted.
Along with our determination to make a normal child, at least physically, out of our defective baby, was a determination not to let all the sweetness and enjoyment and even nonsense die out of our lives. His father and I are both young and so haven’t the habit of thinking about or brooding over the past, and that is a help. We do not think of our baby as different from others except when we are forced to. That may be cowardly but we feel it is the only way in which we can hope to have any happiness in a situation of this kind. It is literally true that for days at a time we do not think of our son’s subnormality. We are as pleased with the little things he learns to do as if he were perfectly normal. Perhaps more so. We have had our emotions and our perception sharpened to the point where we enjoy everything about him, and are keenly aware of his emotions and wishes. It’s as if because we love him so devotedly and so specially, and because we know we will not always have him with us, that we are somehow closer to our baby and he to us than is normally the case. We are hoping that we can remember what we have felt and learned from him, so that if we have other normal children, we can understand and help them more easily and perceptively. Just as we have learned through this different child that careful attention to diet through and past babyhood has its rewards, he has also taught us that there are things which it is wiser to be careless about. Little naughtinesses, such as tipped-over waste baskets, investigations into forbidden territory such as mother’s sewing basket, spilled and messed-in food, are to us not naughty at all. We have watched too hopefully for the awakening of our baby’s curiosity and his desire to investigate to regret the consequences of that curiosity and desire. My relation to my child is more important than any detail of housekeeping ever could be. That does not mean that we have spoiled our baby. To refrain from spoiling our son was the hardest lesson we had to learn, I think. For if it is hard not to spoil a perfectly normal intelligent child, how much more difficult it is to be firm with a little child who perhaps does not understand what you mean at all, who has no place in life, who is more than ordinarily helpless. Add to this the fact that at the first signs of discipline, relatives and friends are apt to be horrified and consider you a monster of cruelty. Luckily for us, our baby is naturally amiable and easily handled, at least so far. Nevertheless we did have our battles to fight, yet now, none of the friends and relatives who thought us stern would wish to exchange our well-behaved youngster for a screaming little tyrant. We felt it was a kindness to teach him early that he could not have his own way all the time, that other persons must be considered. And he must learn to do as he was told without undue fuss. He has learned this lesson well, and I am not afraid to take him anywhere. I know he will not make a scene in stores, or in friends’ homes. In spite of his sub-normality, he is always welcome. And so he has taught us that good manners and unselfishness begin early and at home, and make a child well-liked and acceptable everywhere. I firmly believe that the mentally defective child needs even more than the normal one, the security that a regular schedule gives. I do not mean that everything must be sacrificed to schedule, but that, on the whole, the child must be able to expect the same things at the same time each day.
Even for his sake we have not been sorry that our child was born. And we are learning many things from him. He has improved our sense of values. We cannot find many things to be upset or tragic about since we have learned to live with our personal tragedy and make the best of it.
It is only by reckoning what you gain from a bitter experience, as well as what it costs, that you can place a proper value upon it. We honestly believe that our next baby will be unusually lucky because of our experience with our first child. We haven’t much money, and we aren’t especially wise or talented, but we are now prepared to welcome a child with all our hearts. We will be ready for him with our minds as well as our hearts, with a full realization of what it means to be responsible for a child, and of what we owe him. We want a child now more than we did before Mickey was born, because we know what a child can bring into the lives of his parents. And we say to ourselves, ” If this little one can give us so much joy, how thrilling it must be to watch the development and growth of a normal child ! “
We know that the hardest part of all is ahead of us. For if ever we have other children, we must make provision to have our “different ” little boy live away from home. It is too bitterly unfair to let a normal child face the pity, the curiosity, the whisperings about a defective child that we, as adults, find it hard to meet. Then, too, we know that our handicapped child would be miserable if he had to compete, though it might be only on the playground, with normal children. He has the right to be among his own kind, where he need face no unfair competition. Only so can he possibly be happy as he grows older. Anyone who doubts this need only think back to his own childhood, to remember with shame how heartlessly the neighbourhood idiot was teased. Those are plain words, but this is a situation that calls for plain thinking. We may gloss the facts over to ease our hurt, but the world won’t. The time will come when it will be best for our child to go to a special institution. We will see him there often, but the privilege of doing things for him ourselves will be over. It is our hope that he will adjust himself very quickly and be happy almost at once. Yet it hurts to realize that he will forget us almost entirely, as we know he will. Always he will be in the back of our minds and hearts,’ and as long as we live he will be what he is now, at once a source of joy and love, and of pain. We don’t think about the parting from him any more than we can help, but when it comes we hope to be able to do it quietly, and then to begin the job of building life and happiness in our home without him. Thousands of mothers and fathers will know exactly what I mean, and with them, with understanding hearts, we join in knowing that though it is a heavy burden to carry, still we have lightened it by doing honestly what we thought was right and best for our little ” different ” child. After that we can only commend him to God, and who knows but that He has special care and regard for these little ones whose clocks stand still ?
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