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"We Kept Our Retarded Child At Home"

Creator: Frank Piccola (author)
Date: November 1955
Publication: Coronet
Source: Available at selected libraries
Figures From This Artifact: Figure 1

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by FRANK PICCOLA, as told to RALPH BASS

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Eddie is ten. He can't dress himself, tell time or play "hide and seek" like other kids. But he can repay love and affection

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EIGHT YEARS AGO, when our son Eddie was two years old, doctors told us we would have to shut him up in an institution for retarded children. I usually take my time before making up my mind, but for once I didn't wait a split second before deciding good and loud, "Over my dead body!"

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We haven't put Eddie away. And even though at ten he's like a four-year-old, I'd say we're as happy a family as there is in the Borough of Queens in New York City where we live. I know you'll find that hard to believe when I tell you some of the things Eddie can't do and the things that he needs help with -- the help of my wife or myself.

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He can't dress himself, or use a knife for spreading or cutting. He can't tell time, or the difference between colors.

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He can't name the days of the week or tell his age. He doesn't know his right hand from his left, or his home address. He can't print simple words. And he can't play games like "farmer in the dell" or "hide and seek."

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But I wish you'd been at our house the other day when Eddie, for the first time, managed to pour some soda into a glass and only spill a little bit!

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My wife Anna and I felt the way you did when your kid brought home a perfect report card. And you could see that Eddie knew he had done something terrific. The look of happy pride and love he turned on us made up right then and there for everything we'd been through.

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I don't think you could tell there is anything much wrong with Eddie just by looking at him. He's about four feet six, which isn't too small for his age. He weighs 58 pounds, about average for his build. He has nice white teeth and a straight nose. If you smile at him, he smiles right back.

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It's when Eddie moves around that you notice he's different. His wrists are kind of loose, and also, he can't control his left leg too well.

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About the only other outwardly abnormal thing about Eddie is his unusual restlessness. He moves around all the time and you can't get him to stop talking.

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Strangers often find it hard to follow what he's saying, but we understand him. It's usually something like wanting to go for a ride or asking for a drink of water -- anything a very young kid might jabber about.

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Sometimes it's hard to figure out if Eddie understands everything you say to him. But there's one thing sure: he's sensitive and his feelings get hurt.

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I think the main cause of these moments of misery is the fact that people don't understand about kids like him. Some of our neighbors seem to think he's a kind of monster who might do God-knows-what to their children.

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About a year ago, we heard Eddie screaming and rushed out in time to see a woman give him a shove that made him stagger. It turned out that she had warned her little daughter against going anywhere near Eddie; and when the child saw Eddie she very naturally cried out in fear and her mother rushed over to "protect her."

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A little later we had a visit from a truant officer who wanted to know why Eddie wasn't in school. It didn't take him long to realize Anna and I would have gone down on our knees to give thanks if Eddie could go to school.

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We were pretty sure we knew who had made the complaint. But we weren't really angry because we've learned one thing: people hurt you more out of ignorance than malice. We just felt rotten; and Eddie, as usual, knew it had something to do with him. He went around with a sad look that haunted me.

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Once, my wife was trying to get Eddie to take some glutamic acid tablets which a doctor had suggested, feeling they might help him. He hated the stuff and, like any kid, was putting up quite an objection.

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The first thing we knew, a squad car pulled up. A neighbor had figured that anything Eddie was involved in needed police action, quick! And Eddie -- a kid who is all love and affection for anyone who will meet him one tenth of the way.

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THOUGH THERE ARE plenty of things Eddie can't do, there are items on the credit side. For one thing, he rides a three-wheeler. It took him a year to learn. So what! He can't play with other kids. But that brings him closer to us, and I guess we have become pretty much his whole world.

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I keep thinking that in six more years I'll get my pension and Eddie and I can spend more time together. He loves to go driving with me and he has a remarkably good memory. He'll tell me to turn at a corner when I make believe I've forgotten.

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Around the house he plays with a tin dish he calls his steering wheel. But as simple as that would seem to make him, he can easily recognize the cars of friends a block away.

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Before Eddie was born we had four other children, two girls and two boys, all normal. Our 18-year-old, Frank, Jr., is a Public School Athletic League champ. He brings his friends to the house and they all like Eddie because he is the sweetest, most affectionate little guy you ever met.

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I've been a chauffeur for the city for 20 years and my salary doesn't go very far, but I think we've done everything we could to help Eddie. We don't feel we've sacrificed ourselves in any way. Sure, we've never gone anywhere without taking Eddie along -- but then we haven't wanted to.

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One thing I know and that is that Eddie has drawn us all closer together. Our married children live near us, by their own choice. When the doctors advised us to put Eddie away, my son John was in the Army. We wrote him about it, and I think he would have gone AWOL to stop it if we hadn't promised him we wouldn't.

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That time the woman pushed Eddie, his two sisters heard about it and came around with fire in their eyes. But we calmed them down.

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Because of this kind of feeling, when Eddie began to show signs of improvement recently it was like Christmas and the Fourth of July rolled into one. We had had to wait a long time, though, for even this glimmer of hope.

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WHEN EDDIE WAS only six weeks old we noticed his eyes would stare at the ceiling. Later, he'd stiffen and his eyes would roll back and forth. Naturally we wasted no time getting him to a doctor.

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The doctor said it was just lack of calcium. But we were still worried and took him to a baby specialist who sent us to a neurologist. The neurologist said he couldn't tell much. So we were right back where we started from.

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Finally, when Eddie was two, we got the verdict: Eddie would get more and more unmanageable and we'd have to put him away about the age of four. That's when I made the remark, "over my dead body."

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My wife and I have read a lot on the subject and now we know there are a number of things that can cause a condition like Eddie's. It can be some damage to the brain before, during or after birth. Or it might be German measles during early pregnancy, hard labor or an incompatible Rh blood factor.

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Too little oxygen for the baby during delivery has also been blamed, and in early childhood encephalitis or meningitis can do the harm. But it has nothing to do with heredity, and many times, as with us, nobody knows what happened.

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We do know that Eddie doesn't come within the more easily recognizable classes of retarded children: mongolism, cretinism, microcephaly or hydrocephaly -- though children in this last group are not necessarily mentally retarded. As I understand it, these types come to about this:

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In mongolism, doctors say, the features of the child resemble those of the early fetus. Although the cause is unknown, it is suspected that there has been arrested development during pregnancy.

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A gland gone haywire, the thyroid, is responsible for cretinism. If the child's thyroid isn't working right, he may not develop mentally or physically. He sometimes looks like a mongoloid child.

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Microcephaly means the child has a small and peculiarly shaped skull; and hydrocephaly is brought on by too much fluid around or inside the brain, causing the head to become abnormally large.

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But, like Eddie, most retarded children look pretty much like other kids.

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The thing that happened recently, and made all the difference in the world, really goes back about two years. At the post office Anna saw a collection box of the Association for the Help of Retarded Children, the New York affiliate of the National Association for Retarded Children.

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Just learning there was such an organization was wonderful news. We got in touch with the Association right away and they told us they had started special classes for children like Eddie. He hadn't been able to get into any of the regular Board of Education classes for retarded children because he wasn't up to it.

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Last March he was admitted to the Association class! There are only nine kids in it, so each gets the attention he needs.

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In the few months he's been going, Eddie's span of concentration has increased and he can sit a little longer. But I think the years we devoted to him at home have had something to do with that, too.

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The other day his teacher came to see us. She said, "Eddie reflects love -- he's a happy child."

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If sufficient progress is made, maybe Eddie can graduate into the regular Board of Education retarded classes. But our big goal is for Eddie, when he's seventeen, to get into the Association's "Sheltered Workshop" where they teach kids like him to do simple jobs that can make them partly self-supporting.

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That's what we pray for because like all parents of retarded kids, our greatest fear is the future. You get an awful feeling in the pit of your stomach when you think of someone who needs you so much having to get along without you.

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For the upkeep of classes like Eddie's, parents pay according to their ability. In many cases that isn't much, and the Association must depend upon public support to keep these classes going, maintain its clinics, its recreation and, training centers and the Sheltered Workshop. There is also a great need for research.

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Every year 120,000 retarded children are born in the United States, and today there are more than a million and a half of them. More than a million, like our Eddie, live at home.

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For some families, the answer may be institutional care. If the child lives in a world of his own and you can't reach him, I suppose there's nothing else to do. But if it can be managed somehow, my wife and I believe he belongs at home.

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Keeping a boy like Eddie at home takes a lot of faith and endless hard work. At the beginning, you keep hoping the doctors are wrong. Then you adjust -- you learn to accept it. And in the end you find your reward, watching your offspring grow and nourish as much as nature will allow. And you remember -- love is all that matters.

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