Thursday, November 7, 2019
Down Syndrome Represented in the Society Essays
Down Syndrome Represented in the Society Essays Down Syndrome Represented in the Society Paper Down Syndrome Represented in the Society Paper Down syndrome is caused by the presence of extra genetic material from the 21st chromosome. Approximately, majority of the individuals with Down syndrome have an extra 21st chromosome and are identified as having ââ¬Å"trisomy 21â⬠subtype. Individuals with Down syndrome often suffer from moderate to severe mental retardation, show expressive language delays with relative strengths in pragmatical versus grammatical language abilities, and exhibit relative strengths in visual over auditory/ verbal memory. Down syndrome is associated with a greater risk of developing a range of serious health problems, such as hearing deficits, heart defects, leukemia, hypothyroidism, and gastrointestinal disorders. In reality, in the 1990s, the developmental outcome of children with Down syndrome has greatly improved because of early learning programs, physician and parent updated education about the syndrome, and appropriate medical management. According to factual evidences, intelligence and personality in a child with Down syndrome are affected by dedicated parents just as they are in non-Down syndrome children. Down syndrome patients are most of the time implied as defectives of the society to the point that they are even hindered from the basic human rights, such as detainment, physical abuse, and other sorts of violence. As their numbers continue to grow in the society, various conceptual frameworks, and theoretical perspectives have sprouted in aid to promote acceptance of these individuals. However, representations of these Down syndrome patients still vary as influenced by social and cultural factors. Scope and Limitations The study aims to illustrate the occurring trend of societal representations of the conditions of Down syndrome. The perspective of society over these individuals as well as the prevalent view, either discriminative of receptive, shall be covered in the course discussion. The study shall employ statistic counts of Down syndrome specifically in the United States, which is the primary scope of setting. In addition, the study aims to utilize the conceptual frameworks applied in the course discussion of the said condition. Applying models shall be the prime method of depiction on how society views these individuals. Various standard norms and prevailing cultural etiologies shall be utilized as well in order to validate the claimed results of the research. The following shall be the objectives utilized in the overall research course. These shall serve as the prime guidelines for the conduction of the whole research plan. a. To be able to provide social representations of Down syndrome patients prevailing in the society through the use of theoretical models. b. To be able to compare and contrast the view of the society against this condition through the use of governing norms and perspectives in the society. Purpose of the Study Significantly, the study provides awareness expansion in terms of the societyââ¬â¢s perception over Down syndrome patients. By knowing the established perception of the current prevailing norms of the society against this condition, it facilitates ease in developing health promotive, and organizational programs in aid of this condition. In addition, awareness of such subject induces an initiative to help improve the quality of life for these individuals. Discussion Down syndrome is the most prevalent chromosome-related disorders, which is often suspected after birth due to the physical appearance of the baby. As noted in the latter statement, the presence of an extra chromosome 21 in either the sperm or the egg cell causes the condition of Down syndrome. Chromosome 21 us the smallest of the human chromosomes and contains about 255 genes. The majority of children with Down syndrome, which is around 95%, possess trisomy 21- an extra chromosome in all their cells. Other individuals, which are around 3-4%, possess translocated form of the extra chromosome wherein the extra chromosome 21 is attached to one of a different chromosome pair, and last among the types is 1-2% mosaic, which pertains to varying count of trisomic cells while others a re normal in structure and characteristics. However, the type of chromosome pattern does not significantly alter the pattern of learning difficulties that usually accompany Down syndrome (Buckley, 2000 p. 9). Children with Down syndrome are born at the same rate to parents of all social and education levels, in all ethnic groups and to parents of all ages. Although the risk of having a child with Down syndrome increases with maternal age, a baby with Down syndrome can be born to a mother of any age (Buckley, 2000 p. 9). However, Down syndrome patients are not entirely bound to live in an abnormal environment in accordant to their condition. In fact, various organization and sectors in society encourage the normal living of these individuals. All children with Down syndrome should stay with the family, and most can be mainstreamed into kindergarten (Cicchetti and Beeghly, 1999 p. 302). It is essential to use measures for Down syndrome to monitor growth and development. In the advent of their maturation and growth, most of these individuals with Down syndrome are able to leave home, work, and form relationships. In fact, some are even noted to have the capacity to handle their own family (Taylor and David, 2005 p. 41) Scientific and medical research on Down syndrome is gaining momentum. Research is continuing on identifying the genes in chromosome 21 that cause the characteristics of Down syndrome. According to the National Down Syndrome Society, it will be possible eventually to improve, correct, and prevent many of the problems associated with Down syndrome. There is hope that in the future, the ongoing research on Down syndrome will lead to development of an intervention and cure (Nielsen, 2002 p. 61). Down Syndrome Statistics Down syndrome was the first intellectual disability described and is the most common genetic form of intellectual disability. Due to its frequency, the general-public is most aware of Down syndrome, and for many, it is the prototypical form of intellectual disability. Approximately 7000 infants are born in the United States each year with Down syndrome. In fact, Down syndrome accounts for approximately one-third of children in special education (Harris, 2005 p. 194). The condition is not attributable to any behavioral activity of the parents or environmental etiologies, although some research on environment counters such statement. The probability that another child with Down syndrome will be born in a subsequent pregnancy is approximately 1%, regardless of maternal age. However, a number of risk factors have been investigated, including geographic location, race, ethnicity, season of birth and environmental hazards; however, none of these have been found relevant to affect the occurrence of the said condition (Harris, 2005 p. 194). The incidence of trisomy 21 correlates strongly with increasing maternal age children of older mothers has much greater risk of having Down syndrome. Up to mid-30s, women have a constant risk of giving birth to a trisomic child of about one per 1000 live births. Incidence then increases sharply to 1 in 30 at age 45 years (Jobling, 2006). The estimated incidence of Down syndrome is between 1 in 800-1,200 live births. The risk of a mother having a second child with Down syndrome is 1% regardless of maternal age, unless the syndrome is associated with translocation of chromosome 21 (Rubin and Strayer, 2007 p. 190). Medical Model- Genetic Testing and Perspectives In general, Down syndrome samples and normal or other mentally retarded groups of similar mental or chronological age have been compared at a single point in time. Medical practitioner perceives the condition more of a genetic disorder than a pathological disease. Guided by the principle of naturalism and existence, the health care practitioners further view the person with Down syndrome in a biological means rather than the sociological and physical morphology in order to deliver the rightful care (Rogers and Coleman, 2002 p. 8). To some point of logic, these practitioners possess the capacity to analyze and predetermine the conditions of these individuals. Most often than not, medical field comprehends the totality of the Down syndromeââ¬â¢s behavior, attitude and perception towards their environment. However, the burden takes in since, the actual condition still possess no cure, but only therapeutic procedurals and pharmacologic therapy for symptoms. In addition, genetic preview is the prime intervention that they can do in order to prevent further progression of the condition, or the conception itself. Genetic tests involve laboratory analyses of chromosomes, genes, or gene products (enzymes of proteins) to detect a gene alteration that can be the etiological agent or is likely to induce a specific genetic disorder or condition. Genetic testing can be DNA- or RNA-based, chromosomal, or biochemical in nature and procedurals, which possess various advantage and disadvantages. Genetic tests are currently used to predict risk of disease, to screen newborns for genetic conditions, to screen pregnant women for risk of genetic conditions, fore prenatal or clinical diagnoses or prognoses, and to direct clinical care. The procedures of chorionic villus sampling and amniocentesis are the primary genetic testing involved in the detection of Down syndrome (Jenkins and Lea, 2004 p. 75). Parental and Public Model: Perspective of Parents and Community One of the impending fears of the parents, especially the conceiving mothers, is to have their child born with abnormalities and conditions, especially those genetic in nature that usually possess no direct treatment. The anxiety that occurs to the parents is usually the conceptual urge that they might not be able to acquire a normal family with an abnormal condition of their child, such as those with Down syndrome (Harris, 2005 p. 194). The condition is permanent and, most likely, gradually modifiable accompanied by costly therapies and treatments. Such condition is very much frustrating and disappointing especially for the parents. Most often than not, families with Down syndrome patients view their child as an inactive, unproductive, and to the point of insignificance. In fact, they nurse and nurture the child until they serve their burden character in the family, which triggers further depression, anxiety and frustration among these parents. In addition, the fear of having another child or future conceptions may be affected if a Down syndromic child has been born in their lineage. The family expansion tends to be withdrawn and halted, or to the point of family breakdown (Place, 2007). However, such perception is not considered to be the overall established mechanism of Down syndrome child management in the family. Other informed and educated families, despite of their childââ¬â¢s condition, even enhances their childââ¬â¢s development, nurture the fad in which they are in, enhances social interaction, and further development (Harris, 2005 p. 194; Place, 2007). Although, some point of these procedures require costly services especially for special child care and affiliations to such institutions. Model Applications: Societal Perception towards the Condition Behaviorism, humanism, and sociological labeling are some of the theoretical concepts that govern the attitude of community over these individuals. As the condition of Down syndrome progresses, the impact of various historical evolutions on the disease progression has greatly influenced the societyââ¬â¢s perception over these individuals. In the past, the occurrence of these conditions had been attributed to Mongolianââ¬âlike appearance; hence, connoted as mongoloids (Rogers and Coleman, 2002 p. 8). However, this notion did not remain in the society, and soon after, it was also discarded. Behaviorism Theoretical Model Behaviorism is the theoretical concept that mainly focuses on behavioral patterns, motives, and actions of individuals towards other subjects. The concept played a major explanation for the occurrence of such community perception towards Down syndrome patients. The focus is on specific behavior, and the orientation is very much on the here and now. The basic principle underlying behaviorism is that all behavior is learned (Vito etal, 2007 p. 115). The fundamental behaviors are learned by operant conditioning and by imitation of otherââ¬â¢s behavior. The condition of the learned behavior is strengthened by reward and avoidance of punishment or weakened by lack of reward and aversive stimuli. Whether a given behavior pattern persists depends on the differential reinforcement ââ¬â the rewards and punishments attached to that behavior and the rewards and punishments attached to alternative behavior. In the past, children with the condition have experienced tremendous discrimination from their community. They have experienced social isolation due to the conditions of insurgence in behavior similarities. Community inscribed the conditions of these individuals as abnormals in the society; hence, validated by behavioral negativism, the abnormality viewed by the community has caused them to be discriminated (Harris, 2005 p. 194). However, such discrimination has been validated by the research conducted by Kliewer (1998) wherein literary discriminative behavior was proven if rightful or appropriate response towards such individuals. The methodology includes 10 students with Down syndrome that were examined for two annual periods. During the course of 2 school years, the research conducted tape-records of 45 observations and 12 interviews that resulted in 1,300 pages of field notes. The research reveled that the actual progression of condition does not affect the literary capacity of the individuals. In fact, the students have evidently manifested communicative directives over literary needs. Although, the researched behavior of these individuals have been validated to possess lesser response towards isolation (Kliewer, 1998). The unproductiveness and inactive character of Down syndrome patients have established the behavioral discriminative approach of the community towards these individuals. By the principle of operant conditioning, the community has instilled to their minds that such individuals are burdens of their families and of the society; hence, they are discriminated and not provided with equal rights. Humanism Theoretical Model Meanwhile, as the conceptual framework of humanism converges with the view of humanitarian help over such in-need individuals. The concept that prevails in Humanism is the value of human life itself, regardless of the personââ¬â¢s outward or inward status in terms of disease, financial nature, etc. As for this theoretical model, it depicts the equal rights of individuals to be imposed since, human beings are supposed to be valued above all else. The essential core of social environment should disregard the impairments of such individuals, and perceived them with equal view (Buckley, 2000 p. 9). The research of Appl (1998) has tried to validate possible benefits of Down syndrome in the enhancement of their societal relationships through adult-child interactions. The participants of the research include 26 families that possess at least one or more children with Down syndrome have been analyzed in a 10 years observation. The research has established inclusive criteria that require a family of complete members, particularly the parents, childââ¬â¢s age ranging from 7 to 15 years old, and validated assessment of capacity to properly deliver care for the individuals with Down syndrome. Meanwhile, the research also monitors the condition of 26 individuals with Down syndrome present in the orphanages with same age criterion to test any possible differences during span of growth. The methodology involves quarterly assessment of both mental, physical, and emotional stabilities of the subjects involved. Results revealed insignificant variations over the first 3 years; however, as the time pass by, behavioral changes and cognitive comprehension had increased on those individuals living in families. Such claim was validated through the use of paper and pencil exam that depicts simple picture identification tests, which revealed higher results ranging from an average score of 15 pts. out 20 pts. to perfect score. The score rating of family groups ranges from 14 pts. to 20 pts. with majorityââ¬â¢s score of 17 pts. , while family groups of Down syndrome in orphanages revealed 9-13 pts. with 11pts. as the most predominant (Appl, 1998). Social Construction Theoretical Model Social model views disability as the result of a dynamic process involving complex interactions among biologic, behavioral, psychologic, social and environmental factors. The social model enables people with disabilities to look at themselves in a more positive way, which increases their self-esteem and independence. In addition, the model also advocates looking beyond a personââ¬â¢s impairment and functional limitation to all and equal participant in society (Brown et al. , 2006 p. 462). The model has been tested by the experiment of Gloria (2001) in the school setting in terms of Down syndrome childrenââ¬â¢s capacity to perform well in normal education firms. As opposed to the sociological labels implicated by the society over these individuals in terms of literary competence, and cognitive capacities most evidently in the past was validated by research of Gloria (2001). The procedure was supported by National Down Syndrome Society through the provision of list of affiliates all over United States as well as Puerto Rico. A total of 250 questionnaires were sent to those parents with and without child/children with Down syndrome that participated in the research. The design of the questionnaire contained four levels of questioning: 1) background experience of the teacher, including amount of teaching experience, knowledge of special education, and knowledge/attitude toward inclusion; 2) teacher preparation for inclusion by the district and/or parent, and the transition process of the student; 3) classroom information on curriculum used, class arrangement for instruction, and maintenance of therapies and support services; and 4) classroom management issues, including instructional and behavioral management strategies. The objective was to determine the methods that general educators felt effective or otherwise with the inclusion of children with Down syndrome in their general education classes. In addition, the survey aims to evaluate the education standards provided by the academic groups among Down syndrome patients, and consequent response (Gloria, 2001). The results of the surveys revealed that Down syndrome patients still posses the capacity to enter general educational firm (Gloria, 2001); hence, validating their capacity to outlive the discriminations implicated to them by the society. Such individuals still possess the capacity to enter and conform to human societal standards provided with proper, extensive and appropriate guidelines of modifications (Jobling, 2006). As with the research conducted, Down syndrome individuals may still possess the capacity to outlive their condition and live their life normally. The advantage of such model is the provision of probable humanitarian approach of equity towards these individuals. However, with the dynamic progression and varying capacity of Down syndrome individuals may compromise the claims of norm capacity, which is the prime disadvantage of the theoretical application. Further validation and research that conjure positive and similar results may prove the claims and validate the implicated statement. Summary and Conclusions As for the research arguments proposed in the study, the discriminative outlook of the society over these individuals is evidently negated. Down syndrome patients may possess actual evidence of defect yet the capacity to outlive and improve is still present among these individuals provided that proper guidance, upbringing, environment, and appropriate personnel are present in their social circle. As the behaviorist implies, the differentiation of the trisomic features and behavior have left these individuals discriminated, has been proven irrational in this research. The social label that such individuals are poor in cognition and developmental capacities has been negated by the humanistic approach of validation, which proves that enhancement and development among these individuals are still possible. References Appl, D. J. (1998, September 2). Children with Down Syndrome: implications for adult-child interactions in inclusive settings.. Journal of Research in Childhood Education , 64, 443-451. Reviews research on children with Down Syndrome, highlighting physical, medical, intellectual, language, and behavioral characteristics that provide valuable information for caregivers and teachers in planning and intervention. Reviews research on parent-child interactions, providing guidelines for caregivers and teachers working in inclusive settings. Suggests that interactions and environments must be adjusted to support the uniqueness of each child. Brown etal, S. P. (2006). Exercise Physiology: Basis of Human Movement in Health and Disease. Lippincott Williams Wilkins. Designed as the principal text for undergraduate courses in exercise physiology and science, this unique and informative text combines general undergraduate material with vital clinical information not found in competing resources. Key content includes detailed coverage of muscle physiology as well as evidence-based clinical information that helps students link theory to practice. Questions and answers help students review core material and reinforce concepts essential to effective practice. Abundant tables, graphs, and full-color illustrations support the text. Buckley, S. (2000). Living with Down Syndrome. The Down Syndrome Educational Trust. Offers a person-focused introduction to Down syndrome. This book explains the effects of Down syndrome on development, stressing that while individuals with Down syndrome do have special needs, they are people first, with the same rights and human needs as everyone else in their communities.
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