AND
MENTAL RETARDATION
A Brief Study in One Type of Multiple Disability
By Lethenual C. Stanfield
Presented to Professor June
Brown
in partial fulfillment of requirements for SPE 540
Winter Quarter 1996
Introduction
When most people think of a person or child having a disability, they tend to think one dimensionally. The image that usually forms in the layperson’s mind (including most prospective general education teachers) is of a child or young person who is visually impaired or wheel chair bound or speech impaired or hard of hearing or mentally retarded or perhaps otherwise health impaired. In short, the average person thinks of the disabled individual as a person with a single disabling condition to be “accommodated” or “overcome”.
Those who work with the differently abled (my preferred term) or those who have differently abled family members know that disabilities often come in pairs or more. Helping to educate such children and young people can be far more complex than most people realize. It is not within the scope of this short paper to discuss the myriad of possible combinations of multiple disabilities nor do I wish to over generalize as I found most authors did (in fairness, many volumes would be required to cover such a topic). For this and other personal reasons I have chosen, for illustrative purposes, to discuss retinitis pigmentosa, a specific condition that often leads to multiple disabilities.
I will narrow the scope even further by discussing primarily the visual impairment and the potential mental retardation aspects of this disabling condition. I will briefly review what is known about the causes of the disease, medical research, educational and learning characteristics of the visually impaired and mentally retarded, their long term prospects, and a personal perspective on how best we may help these children.
Background/Causes
Retinitis pigmentosa is a disabling hereditary disease affecting approximately 100,000 people in the United States (Weiss, 1990). By comparing likely births for Down Syndrome (Hallahan & Kauffman, 1994) to those for retinitis pigmentosa (Tenenbaum, 1993) we find that retinitis pigmentosa is at least three times more rare than Down Syndrome. However, its affects can be more devastating. According to Weiss (1990), scientists have speculated that 20 to 30 different hereditary disorders fall under the heading of retinitis pigmentosa. These disorders form a continuum of disabling and potentially deadly syndromes ranging from the barely perceptible (and frequently undiagnosed) gradual loss of vision, to childhood blindness, respiratory, digestive and other health impairments, and varying degrees of mental retardation.
Medical Characteristics/Research
In most cases of retinitis pigmentosa, vision loss begins to occur in childhood with the first symptoms being night blindness followed by a gradual loss of daytime peripheral vision (tunnel vision). The field of vision continues to narrow, ultimately resulting in total blindness usually between the ages of 30 and 80 (Tenenbaum, 1993). One of the reasons vision impairments associated with retinitis pigmentosa are sometimes not diagnosed as early as they should be is that some of these children also suffer varying degrees of mental retardation. Such children are often unable to recognize or understand their own vision loss until symptoms become pronounced. The cause of their retardation is often not known until the visual impairment is diagnosed. Unlike Down Syndrome, these children have no specific characteristic physical features, and genetic testing for polygenic human disease (caused by many genes) is still in its infancy (Kajiwara, Berson, & Dryja, 1994).
On-going medical research has so far failed to reveal a generally accepted treatment or cure for any of the symptomatic conditions of retinitis pigmentosa (Weiss, 1990). One promising experimental study has shown that high (near toxic) doses of vitamin A palmitate may slow, but not stop, the degenerative vision loss (Raloff, 1993). The mental retardation and other more serious aspects of retinitis pigmentosa have so far received less attention from medical researchers. However, there is hope that genetic research may one day identify all of the specific causal genetic mutations. It is very likely that over the next few years the genetic pathology of this debilitating group of hereditary conditions will be much better understood (Humphries, Kenna, & Farrar, 1992). Whether or not such understanding leads to effective treatment or prevention is yet to be seen.
Educational/Learning Characteristics
In reviewing some of the available literature (D’Zamko & Hedges, 1985; Halliday & Kurzhals, 1976; Hallahan & Kauffman, 1994; Blodgett, 1971; Thomas & Thomas, 1965), I found that most authors discuss visual impairment and mental retardation separately. Only one of the texts I reviewed (Meyen, 1982) devoted an entire chapter or section to multiple disabilities. Since many conditions such as retinitis pigmentosa may result in more than a single isolated disability in a child, this less than adequate treatment of the multiplicative effects of such conditions can be misleading. It is my belief that some of the public advocacy for the concept of full inclusion may be based, in part, on the misperceptions caused by this one dimensional treatment in the literature.
As Lehr (as cited in Meyen, 1982) points out, individuals having two or more disabling conditions present the same set of characteristics as other students who have each of the disabling conditions separately, but additional characteristics are often manifested because of the interaction of the disabilities. She calls this a “synergistic relationship” between the disabling conditions that may make the associated personal and educational problems of such children far more than additive.
From an educational standpoint, the mentally retarded and the visually impaired have some common characteristics. I will summarize some of these commonalties along with some educational planning differences that should be associated with the teaching of the mentally retarded child who has retinitis pigmentosa.
In my research, I found general agreement among all authors that both the mentally retarded and the visually impaired need maximum sensory stimulation beginning in early childhood. Where as the normal seeing child will show a great deal of natural curiosity about the world and will seek to explore all that he or she sees, the non seeing child’s curiosity is limited by what they feel or hear. Additionally, without proper guidance they may grow ever more withdrawn over time (loud noises and unanticipated approaches in the dark may become unwelcome or frightening). Thus it is important early on to provide the visually impaired child with maximum tactile and auditory stimulation in a safe and rewarding environment. In such an environment the otherwise normal visually impaired child will develop mentally and academically at a rate similar to his or her non disabled peers (D’Zamko & Hedges, 1985).
The mentally retarded need carefully structured and guided stimulation for somewhat different reasons. The retarded have great difficulty in forming logical connections and relationships between what they see, hear, and feel (Thomas & Thomas, 1965). He or she will be less curious and less persistent in seeking answers to questions about the environment. According to Hallahan and Kauffman (1994), Thomas and Thomas (1965), and Blodgett (1971), virtually all retarded children have problems of self regulation and self criticism. They lack the ability to plan their work or to apply self regulated strategies such as rehearsal of tasks. This leads to far more dependence on the teacher or others to initiate a learning activity or for suggesting the next logical step in a task.
“Instruction for the mentally retarded requires careful sequencing of the skills to be learned” (Lehr & Meyen as cited in Meyen, 1982, p. 433). Although memory and association skills are generally poor, some mentally retarded children remember specific things very well (Blodgett, 1971). Such children will remember specific, concrete, and often isolated events for years after most adults have forgotten them. “The normal child remembers things, too, and he has an advantage: he hooks them together like the cars of a railroad train so that one thing leads to another” (ibid., p. 47).
It is this capacity to make associations, to hook things together, that the retarded tend to lack to a greater or lesser extent. Lehr and Meyen (as cited in Meyen, 1982) suggest that over learning, repetition, orally repeating directions, the use of mnemonic strategies, and music have all proven helpful in assisting the mentally retarded to form the necessary associations to make memory useful.
One thing on which all authors agreed was that the mentally retarded have the greatest of difficulty in conceptualizing abstract ideas. For this reason, when teaching the retarded, one must always go from the concrete to the abstract. Give the pupil something concrete to touch, feel, see, manipulate that can then be used to represent the abstract. Constant use of models, real life objects, audio visual materials, and field trips are necessary to their understanding (Thomas & Thomas, 1965).
Many of these same techniques are highly recommended for the visually impaired for whom all objects and events in their environment are, at first, abstractions (Halliday & Kurzhals, 1976). The primary difference being that with the totally blind, the auditory channel takes on somewhat more importance. Additionally, when working with the visually impaired, early orientation and mobility training was emphasized by all authors. It is obvious that this training should also be important for the mentally retarded/visually impaired but is likely to be much more difficult. Because of their difficulty in conceptualizing what Hallahan and Kauffman (1994) call a “cognitive map”, the mentally retarded/visually impaired most likely will need to process spatial information as a “sequential route”.
In summary, we can say that both the visually impaired and the mentally retarded need early intervention, guided and structured stimulation, maximum use and development of the tactile and auditory senses augmented whenever possible by the visual channel, and the use of music, repetition, and other mnemonic strategies particularly helpful to the mentally retarded. For both groups, the constant use of concrete models, real life objects, manipulatives, and field trips are highly recommended. Mobility and orientation training are essential, especially for the visually impaired.
Long Term Prospects and a Personal Perspective
The vision loss associated with retinitis pigmentosa and its rate of onset and progress is relatively well understood. Thus, we can, with a degree of confidence, make some general statements about the implications of the visual impairment. However, the other symptomatic conditions, especially the degree and severity of the possible mental retardation, that may accompany this disease are highly variable. Generalizations are therefore difficult at best and potentially misleading at worst.
That having been said, it is important for the potential educator to think about not only the short term educational tasks at hand but also the long term needs of these children. So, at the risk of over generalization, I will highlight some personal thoughts.
Children with retinitis pigmentosa generally do not develop significant day time vision impairment until late childhood or early adolescence. However, once vision loss begins, it inevitably continues until total blindness in middle to late adult life. Thus it is imperative when participating in the education of children with retinitis pigmentosa to constantly keep in mind that we are preparing them for a world of eventual darkness. This means making maximum use of all available senses, including sight, for their early education but emphasizing the tactile and auditory channels over time.
For children with no or only mild to moderate retardation, some emphasis in reading should be on the use of Braille. Children with more severe mental retardation will need to be educated much as other retarded children except that again, more emphasis will need to be given to developing their tactile and auditory senses for perceiving their environment. As the child reaches adolescence, more effort must be given to maintaining the child’s orientation and mobility.
Because this hereditary disease creates a wide continuum of disabilities, it is impossible to generalize about an appropriate long term educational destination for these children. For many, totally independent living will not be possible. However, with proper instruction and support in an assisted living arrangement, even the severely retarded and completely blind may exert some control and independence in their lives. These are the long term human needs for dignity and worth that must be kept in mind by all who educate.
REFERENCES
Blodgett, H. E. (1971). Mentally retarded children: What parents and others should know. Minneapolis: University of Minnesota Press.
D’Zamko, M. E., & Hedges, W. D. (1985). Helping exceptional students succeed in the regular classroom. West Nyack, NY: Parker Publishing.
Hallahan, D. P., & Kauffman, J. M. (1994). Exceptional children: Introduction to special education. Boston: Allyn and Bacon.
Halliday, C., & Kurzhals, I. W. (1976). Stimulating environments for children who are visually impaired. Springfield, IL: Charles C. Thomas.
Humphries, P., Kenna, P., & Farrar, G. J. (1992, May). On the molecular genetics of retinitis pigmentosa. Science, 256(5058), 804-808.
Kajiwara, K., Berson, E. L., & Dryja, T. P. (1994, June). Digenic retinitis pigmentosa due to mutations at the unlinked peripherin/RDS and ROM1 loci. Science, 264(5165), 1604-1608.
Meyen, E. L. (Ed.). (1982). Exceptional children in today’s schools: An alternative resource book. Denver: Love Publishing.
Raloff, J. (1993, June). Vitamin slows advancing blindness from RP. Science News, 143(25), 390.
Tenenbaum, D. (1993, June). Saving sight: New treatments for retinal problems. American Health, 12(7), 66-67.
Thomas, R. M., & Thomas, S. M. (1965). Individual differences in the classroom. New York: David McKay.
Weiss, P. L. (1990, September). Retinitis pigmentosa: Filling an information gap. Science News, 138(38), 172.
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