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An Insidious Life-Shortener of the Mentally Handicapped: Excess Weight
It is ironic that whereas most parents of congenitally mentally handicapped children spend much time during our children's growing up years seeking the best medical care, we same parents virtually abrogate that responsibility by allowing our children, once adult, to lead a life style that almost certainly will shorten their life span. I refer to the well-known life-shortener - excess weight. Weight and the mentally handicapped: Excess weight, known especially to cause cholesterol and heart problems in the general adult population, becomes still a greater problem for the mentally handicapped. First, because many do not have steady employment and employment involving significant physical activity, and because many do not have sufficient skill to be active in sports, they tend to lead a relatively sedentary life style which promotes more weight gain. Secondly, the excess weight often compounds the general negative stereotype mentally handicapped people have in this "think-thin" society of ours. There may be physiological and psychological reasons for the tendency of the mentally handicapped to gain weight. Speaking from experiences only with children having Williams syndrome (WS), during the early years WS children are "slow to thrive," have difficulty in retaining food as infants, and often are finicky eaters until puberty. As a consequence, we parents tend to be constantly pushing our scrawny kids to eat - eat anything, as long as they eat. At puberty, especially for women, things start to change. First of all, the body soon reaches its height limits and all further growth will be lateral. Secondly, the hormonal changes that begin with puberty tend to influence the formation of more fat deposits, and in specific areas, such as in the buttocks. Finally, frustrations of coping in an adult world, the ensuing sedentary life style, and the opportunities for eating lead to rapid weight gain. Whereas, as with ten year olds we had scrawny and wiry children, those same children often soon become excessively heavy. "Hold on." you may say. "Aren't you falling into the same obsession of 'think thin' that plagues most of us?" No. We know only too well how excess weight diminishes our health and shortens our life span. We also know that a number of the syndromes of the congenitally mentally handicapped include heart problems. Williams syndrome, in fact, is often diagnosed by the early detection of a heart murmur or other heart and/or aorta defects in infants. We parents of such children, therefore, have an even greater responsibility to teach our children a life style of eating moderately and of having a regular exercise routine. Weight, life span, and lifetime financial planning: Such a charge is not just a responsibility, it is in harmony with much of the planning of responsible parents of the mentally handicapped, that is with the planning at which we work so hard to provide for our child after we die. If it is a truism that parents of handicapped children differ from other parents in that a major concern of ours is the welfare of our child after we die, then it is even more important that we place special effort on teaching our children to eat properly and exercise regularly. Otherwise, we may find ourselves having sacrificed for years planning for the future of our handicapped child, sometimes even neglecting our more self-sufficient other children, and find that our overweight handicapped child may not enjoy a full, long, and healthy life. We parents of mentally handicapped children are also faced with another related dilemma: We do not have sufficient good scientific evidence of the "normal" life span for our children. Taking the case of Down syndrome as an example, whereas once it was thought that Down people had a relatively short life span, it now appears that their life span is significantly longer. With Williams syndrome, we have even less information because any Williams people over 35 years of age were born before the syndrome was discovered and named; hence, although there may be many individuals with WS over 35, probably most have not been diagnosed or even are unaware of WS. Gloria's saga from weight problems and a devastating accident to weight control: Before I report on a currently successful case of a mentally handicapped individual, my daughter Gloria, who appears now to be in control of her weight problem and will describe how she does it, I must confess that her success was not due to anything brilliant that we did ourselves, but was a freak result of a horrible car accident which almost killed her. For me, I am a "yo-yo" dieter, a person of excessives who every five years goes on a starvation diet, and who spends the next four years gaining back the weight I lose plus a few more pounds. I hope my daughter is reforming me. Gloria was the typical scrawny Williams child, but as a late teen-ager she became a compulsive eater and her petite 4'10" body inflated once to 156 pounds. For the past three years her weight has been hovering around 108 pounds, and for the past two months, around 100 pounds. This change in life style and eating habits did not start from a determined family diet and plan, but as a consequence of an accident in October of 1991 which led to Gloria having major hip surgery and being hospitalized for over three months and restricted to a wheel chair and a walker for another three months. One of the consequences of the accident was that the muscles in her left leg softened and degenerated significantly such that Gloria was put on a rigid physical therapy program to restore those muscles. She became obsessed with showing progress in building back the muscle mass, and after the physical therapy stopped, she continued and expanded her leg exercises at a local health club. To this day, Gloria insists on going to the health club, whenever possible, seven days a week for one hour or more. Gloria's atypical motivation: Her motivation? Initially it was not to lose weight, but to please her physician at the rehabilitation ward of the hospital. Gloria would visit the doctor regularly for check-ups on her recovery. Gloria, like most Williams people, aims to please, and if the exercise which strengthened her legs pleased her physician, then Gloria would continue to do them, regardless of the difficulty. About a year afterwards, it became obvious that her daily exercise routine, in which she now spends two 20 minute sessions on the tedious step machine (I can barely get through 5 minutes), was helping Gloria lose weight. Once we started praising her for it and indicated how the weight loss pleased us, Gloria reports to us every day the number of calories she burns (for her step machine is computerized) and her weight. We have been stimulated by Gloria and have started to modify our own diet into a more healthy one, and the whole family is benefiting. The question is can we show the same continued determination that Gloria has been showing.. What happens when we are not around, when our children are not within our immediate care and supervision? That is a problem. Before Gloria got on her current routine, whenever we would go out of town for 5 to 10 days and leave Gloria in the care of responsible loving people, we could almost be assured that she would gain nearly a pound a day. One time we placed all our sweets and pastry in our freezer and locked it. Gloria, then 15, was able to break the lock and get the sweets. On other occasions Gloria would raid my wallet and purchase all sorts of pastries from the food vending truck that visited her workplace at break time. Similar kinds of problem are met by parents whose handicapped children live in group homes. Weight is often a problem there and is difficult to control. Today, we sense that Gloria is so deeply committed to her routine of exercise and healthy food, that she rarely eats junk food or sweets (and then with moderation) when she is eating out with friends, at work, and not with us. We get good reports of her amazing will power; and the bathroom scale confirms her resistance to temptation. We feel that the longer these new habits are ingrained into Gloria's behavior, the longer she will continue them without our encouragement, because someday she will have to live without us. But as an unplanned consequence of her regime, because we now are also following a more healthful lifestyle, we may be around a little longer to help Gloria cope with the many problems mentally handicapped people always face. How do we start? Folks, it is not easy to teach a healthful eating and exercise regime to the cognitively impaired, and it can get discouraging. You do best to start gradually, but start now. Scolding and chagrin are out. Remember, most of our mentally handicapped children want and need our approval. That is the psychology that seems to work, at least in our family. Most communities have a YMCA or a health club. They are well worth a family membership. Usually my wife and I alternate taking Gloria, and we usually stay and do our own exercise routine. Try it. You may like it. The other part of the life style to be mastered is healthy low fat eating. In the USA, with the new requirements of labeling foods for calories, fat, and other nutritional content, it is much easier to select food wisely than it was a few years ago. We now eat most everything we like, but prepared more healthfully, in smaller portions, and complemented by a hearty salad twice a day. What about us? The simple fact that we would write such an article puts more pressure on us to maintain the lifestyle that we preach. So maybe you ought to try our suggestions for your family and mentally handicapped child, and then write your own article.
Dr. Lenhoff, a frequent contributor to Ability Network, is Professor of Biological and Social Sciences Emeritus, University of California, Irvine, a former member of the Board of the Williams Syndrome Association, and currently Executive Vice President of the Williams Syndrome Foundation. |
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