Jennie

The conventional wisdom is to put retarded children in an institution. The conventional wisdom is wrong.

The traits of Down’s syndrome include mental retardation, short stature, and stubby limbs, but it was the slanted eyes and a Mongolian-like fold of the upper eyelid that caught the fancy of a nineteenth-century English doctor.

Langdon Down, familiar with the then new work of Charles Darwin on the evolution of species, described the condition that came to bear his name in a paper titled “Ethnic Classifications of Idiots.” In it he concluded that the mongoloid represented a genetic regression to the supposedly more primitive Mongolian race. He was wrong, but some people accepted his theory, and in 1924, F. G. Crookshank took Down’s theory one step further; in a book titled The Mongol in Our Midst he wrote that the mongoloid was not a throwback to a primitive Oriental human being, but rather to the orangutan. Even today the straight flexion crease found on the palms of many mongoloids is known in medical parlance as the simian line, in reference to a similar crease found on the palms of apes.

Jennie is more like a monkey. Just now as I was typing this, she scampered into the study, put her hands on her hips and said “Hi, Da!” She crinkled her half-moon eyes and gave me a bright, Brushfield-spotted smile (Brushfield spots, white places in the irises or mongoloids, represents defects in the eye-coloring layer). As she was whirling to leave, I gave her a kiss on the head. She smiled and brushed it off. It’s not that she doesn’t like to be kissed. She loves to be kissed, but she brushes all kisses off. It’s what her brothers and sisters do when Jennie kisses them, and Jennie’s picked it up.

Jennie’s eight, and she is mentally and physically retarded. Full grown, she’ll stand no more than five feet. Her mental age now is about four, but it may increase to that of a child of seven or eight. She is perceptive in many ways. She can recognize the way to the store or to Mona’s house (where she stays before and after school), and her memory is excellent. She never forgets a meal and can remember which toys and books belong to her. She’s also capable of holding a grudge when she feels she’s been slighted, and she’s perfectly normal in her ability as the youngest child to tattle on her brothers and sisters if they’ve mistreated her (which is rare).

Food is a big item in her day. The first thing she does in the morning after her mother’s hug is say “Seer-ul.” Once, when she kept gaining weight despite our efforts to restrict her food intake, we became suspicious that she was eating too much at school. My wife, Mimi, and I spoke to Jennie’s teacher, and were told proudly, “Oh now, Jennie—she’s one of my good eaters. She’ll even clean off the others’ plates.” That, we tried tactfully to explain, was just the problem.

The thing they teach you about birth defects during medical training is that when one is present, look for others. A child with a clubfoot may have a cleft palate as well; one with congenital cataracts may also have a heart murmur. In Jennie’s case, she has duodenal atresia, a condition that often occurs with mongolism. The first part of her small intestine was a blind, obstructed pouch rather than a clear passageway from stomach to colon. From birth, she vomited all her nourishment. Strange that nature should accompany its imperfection with a self-destruct mechanism, and yet, maybe not so strange either.

Although it was months before Jennie’s mongoloid condition would be confirmed, the diagnosis of her bowel obstruction was made two days after she was born. Our pediatrician recommended immediate surgery, and by nine o’clock that night she was in the operating room. The bypass was successful, and soon Jennie was greedily taking milk.

A week after she left the hospital, we moved from Sacramento to Madison, Wisconsin, where for a year I did research in medical genetics. We discovered that John Opitz, a well-known medical geneticist, had recently moved to Madison. He saw Jennie and confirmed the diagnosis of mongolism. Opitz held Jennie in his arms as he counseled us. “She sleeps a lot, doesn’t she?” he asked. My wife nodded. Opitz smiled. “Mongoloids are such good babies.” He didn’t seem to want to stop holding Jennie, but holding her was difficult. Floppiness is one of the features of a newborn mongoloid. It’s due to an underdeveloped nervous system, and Jennie had it in full measure. She’d slip right out of your lap if you didn’t hold her closely. “You know she won’t live as long as your other children,” Opitz cautioned, “but love her and keep her with you.” The average age of death of institutionalized mongoloids is about 30 to 35 years. While I was doing medical work at a state school in South Texas I encountered several mongoloids in their late sixties and early seventies in good health. Recent studies show that mongoloids who survive past age five have a good chance of living to adulthood.

We were grateful for Opitz’ advice, because we’d been told earlier to put Jennie in an institution. It was a temptation, since I myself had been taught in medical school to recommend institutionalization for all retarded children. “You can’t do anything for the child,” the pediatrics professor had said, “so do something for the parents.” In fact, you can do a lot for a mongoloid child, and for children who are retarded from other causes. You start with love and do most of the same things you would do in raising a normal child. We have found that the fears we had about a handicapped child not fitting into the family were unwarranted.

Jennie is the hub of our family. Her brothers and sister accept her as a special person but not as a sluggish retardate. When Roger, the oldest and most serious of our children, was eight, I asked

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