by Robert J. Doman Jr.
Down Syndrome is the most common and best known of the chromosomal anomalies. The condition was first described by Langdon Down in 1866. Previously, the children with this anomaly were labeled as Mongoloids. The term was applied to these children because of the somewhat oriental look produced by the epicanthal folds. The folds, which produce a somewhat slant-eyed appearance, are layers of skin located at the region surrounding the eye. The label “Mongoloid” is not an appropriate term, and it is being replaced, through increased knowledge of causal effects, by the terms Down Syndrome and Trisomy 21.
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, imperforate anus, club feet, and congenital heart defects.
The occurrence of Down Syndrome is approximately four in every one thousand. However, there is evidence that the percentage of these births is on the rise. This is perceptibly 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 previously 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 their functional level would always be extremely low.
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 they receive “instruction and therapy” on a level that corresponds to this unnecessary and incorrect train of thought.
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 one that is labeled as a “sheltered workshop,” which in reality is usually a dead-end for the mentally retarded.
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 current 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, the Founder of NACD utilized his rapid approach of instruction for his pre-schools which contained a combination of brain injured children, children with Down Syndrome, “normal” children, gifted children, etc. He 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 on quite a high level when 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 so-called 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. We utilize schools only when we can also utilize normal environments. To assist in the child’s social development, we lean more towards the structured and organized systems, such as church groups, normal learning environments, swimming, music, and gymnastics 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 quickly 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 program utilized for children is that of evaluating function, determining neurological organization, and then providing the family with an environmental program of stimulation and opportunity to assist the child on a step-by-step basis through the developmental stages.
CHARACTERISTICS OF THE CHILD WITH DOWN SYNDROME
The range of function found in children with Down Syndrome is extremely broad. You cannot really make any generalized statements that are applicable to these children, as it only serves to stifle and hinder their developmental growth.
Common characteristics found in the children are hypo-tonality and problems associated with the mouth and breathing. The children tend to breathe through an open mouth; this results in a tongue that protrudes and thickens stifling the proper development of the entire mouth area (function determines structure), which in turn hinders proper articulation. Mouth breathing also affects the depth of their respiration, which then impedes the normal oxygen flow to the brain. Since the children are not breathing through their nose, the sinus cavity does not develop properly; this appears evident in their facial structure. Some of the specific areas of remediation are the usage and control of the mouth and nose.
For the most part, we are talking about a developmental program of specific stimulation delivered with the necessary frequency, intensity, and duration. Again, each program is designed for the individual child, as various children with Down Syndrome may have program needs that are very dissimilar.
INVOLVEMENT IN ACADEMIC PROGRAMS
We also get the children into academic programs 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 beings a few months after birth.
WORKING WITH THE CHILD WITH DOWN SYNDROME
In many ways the child with Down Syndrome is a delight to instruct. and they are always interesting, not only because of the children themselves (who often exhibit much higher learning capabilities than thought to be possible) but also because of their families. However, sometimes there are problems with the parents of children with Down Syndrome.
Due to the fact that Down Syndrome was one of the first identified and categorized child related problems with a definite loss of function, 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 and in that respect, can be difficult families to work with in many cases. Without question, one of the basic requirements for a family is to contribute the time and energy necessary for a comprehensive rehabilitation program. The family must possess the necessary strength and hope that their child can obtain higher degrees of function, and they must be able to sift through society’s constant barrage of negative opinions that the child will always lack normal functions and abilities. What could possibly be more damaging to a child’s developmental growth than a family unit who behaved as if there were no hope possible?
To recapitulate, the program we utilize is one that takes the child through the developmental steps providing an optimum environment in which the child can hope to realize his or her full potential.