Robert J. Doman, Jr.
Journal of the National Academy for Child Development, 1986 Volume 6, No. 9.
Reprinted with permission from the Journal of the National Academy for Child Development|
Copyright © 1986 NACD. All rights reserved.
Effects and Causes
The cause of Down Syndrome was not known until approximately 1932 when Waardenburg suggested that the cause was possibly due to a chromosomal anomaly. This anomaly was not demonstrated until 1956 when Tjio and Levan standardized the number of chromosomes (46) found in the normal human being. A few years later, Waardenburg's suggestion was verified through improved laboratory procedures that demonstrated differences in the numbers and shapes of chromosomes found in various subjects, among them children diagnosed with Down Syndrome.
When a whole or partial chromosome is in excess, thousands of metabolites are created rapidly and excessively in minute amounts. The metabolites then cause blockages that hinder the development of many tissues and organs soon after conception; consequently, individuals are born with a variety of structural, functional, and chemical anomalies. The most common abnormalities are a raised upper lip, depressed nose, high arched palate, fissured tongue, wide spacing between fingers and toes, immature retina development, and congenital heart defects.
The occurrence of Down Syndrome is approximately four in every one thousand births. However, there is evidence that the percentage of these births is on the rise. This is noticeable in the number of these children being born to younger parents, whereas previously it had been more commonly attributed to older parents.
At NACD we are presently treating a significant number of children with Down Syndrome, and our treatments have achieved a marked success. As we have discussed in previous articles in reference to children having various labels thrust upon them, the labels in themselves have come to project particular meaning, and they tend to limit the opportunities of these children. The child with Down Syndrome epitomizes the effect of this type of labeling. It's not unusual to hear of cases of newborn children with Down Syndrome whose parents have been told by physicians to institutionalize the child because "children with Down Syndrome are severely mentally retarded and a burden for their families."
The "Special" Environment
Historically and traditionally, children with Down Syndrome have been placed into Trainable Mentally Retarded (TMR) classes or similar environments that provide the very minimum of what could be a truly developing educational atmosphere. Most research indicates that children with Down Syndrome who stay in the home and who have been exposed to normal environmental stimuli, function at a much higher level than those placed in a special educational environment. It only takes one visit to a TMR classroom for an individual to realize the extreme limitations placed upon the child with Down Syndrome by the TMR environment. Whether the classroom be for 5 year olds, 10 year olds, or 20 year olds, it is an unnatural atmosphere where the children are usually treated as if they are inferior human beings. They are habitually viewed as incapable and subnormal, and receive "instruction and therapy" on a level that corresponds to this misinterpretation of their abilities.
Two of the traditional characteristics attributed to children with Down Syndrome are the inability to learn to read and poor retention of information. As with most other prophecies, this tends to become a self-fulfilling prophecy since most children with Down Syndrome are traditionally denied the opportunity to learn how to read, write, and do simple mathematics. The TMR classroom instruction serves to perpetuate the restricted opportunities and environment found in these suppressed children. The child with Down Syndrome often "progresses" from the TMR environment into a "sheltered workshop" a dead-end.
It is an extremely sobering experience to watch these children and adults shuffling around, doing the most menial of tasks, knowing that they have been categorized, labeled, severely limited in their opportunities, and as a result they are quite possibly doomed to spend their lives in the atmosphere of one of these sheltered workshops and/or a state institution.
Prognosis for the Child with Down Syndrome
There are no inherent boundaries limiting the progress of a child with Down Syndrome. Without a doubt, they can progress at a much greater rate than is currently believed possible.
Years ago, I utilized my rapid approach of instruction for my pre-schools which contained a combination of brain injured children, children with Down Syndrome, "normal" children, gifted children, etc. I was surprised to find that on many occasions the students who had Down Syndrome learned faster than the other children in the classroom. In fact, at two years of age they were learning to read and develop their language abilities at quite an accelerated level, having been given the opportunity.
What to do with the Child with Down Syndrome
Without question, one of the most significant aspects of instruction for these children is to keep them in a normal environment. This often means excluding them from the special education programs and the social organizations for special children, which actually only serve to further isolate and stigmatize them. We attempt to place them in either a normal school situation or to keep them out of the formal school environment. To assist in the child's social development we encourage structured social opportunities, such as those offered by church groups, scouting, and normal swimming, music, and gymnastic programs. It is also vital to have structured play activities within the home that will enable the child to interact with family members and friends.
Treatment of the Child with Down Syndrome
In terms of specific treatment, we treat the child with Down Syndrome much in the same way as the brain injured child, or the normal child on an accelerated learning program. It is preferable to begin working with a child as soon as possible after birth. We at NACD have been fortunate in that we have begun instruction with some children as young as one month of age. The basic approach we utilize for children is that of evaluating vision, hearing, tactility, motor function, behavior, and social development, as well as determining neurological efficiency and academic skills. We can then provide the family with a program of stimulation and opportunity to assist the child on a step-by-step basis through his or her development and education. As a basis for intervention we also encourage the use of diet and supplements designed specifically for the child with Down Syndrome.
Characteristics of the Child with Down Syndrome
The range of function found in children with Down Syndrome is extremely broad. However, some of the more common characteristics found in the children are hypo-tonality and problems associated with the mouth and breathing. The children tend to mouth breathe. This results in a tongue that protrudes and thickens, stifling the proper development of the entire mouth area (function determines structure), which hinders proper articulation. Mouth breathing also affects the depth of their respiration, which in turn affects the development of the chest and limits lung capacity. Since the children are not breathing through their nose, the sinus cavities do not develop properly, which affects the development of the facial structure. Some of the specific areas of remediation involve the structure and control of the mouth and nose.
Involvement in Academic Programs
Children with Down Syndrome need to begin academic instruction at as early an age as possible. The reason being, if you anticipate that a problem is likely to occur in the future, you want to do everything possible to provide the child with a learning or therapeutic environment that will get the child started on the right foot, thereby possibly eliminating the future problem. We begin with language related activities, mathematics, and reading programs at a very early age. The training for these programs often begins a few months after birth.
Perception of Potential
Due to the fact that Down Syndrome was one of the first identified and categorized child related problem, the classification and stigmatization of Down Syndrome is perhaps greater than any other category of child disability. The child with Down Syndrome has become so stereotyped that even the families tend to fall back to the expectations of that stereotype. Without question, one of the basic requirements for a family is to contribute the time and energy necessary for a comprehensive habilitation program. The family must possess the necessary strength and hope that their child can surpass the limits which have been imposed upon them.
The child with Down Syndrome has unlimited potential if given the opportunity. NACD's mission is to provide families with the expertise they need to help their children achieve their innate potential.
|Revised: December 16, 1999.|