Perceptions of Parents With Down Syndrome

Down syndrome is a form of disability which retards the growth of children. This form of disability is perceived differently in different cultures and these different perceptions affect the relationship between the rest of the family and the Down syndrome child. While some cultures see Down syndrome children as abnormal beings that have come back in human form to torment families, others see them as just children who have retarded growth and needs an extra help to grow in their own world. These different perceptions therefore enhance the type of treatment granted to these children by their parents.
Down syndrome most often is caused by trisomy due to no segregation of chromosome 21 in the formation of the oocyte or spermatocyte and it can also be caused by translocation of trisomy 21. This translocation takes place in instances where a piece of chromosome 21 becomes attached to another chromosome often number 14 during cell division. This disability occurs very often in 1 of every 1000 live birth children. This always leads to impairment in cognitive ability and physical growth which could be very mild of severed with some affected children. The recognition of this is very limited.

A great number children suffer from Down syndrome disorder in the world today. Not all these children have the means of being diagnosed to know what they are suffering from due to socio economic reasons. Not being diagnosed is a major problem because it affects their development. The number of children who actually are diagnosed and given adequate treatment is greater in developed countries more than developing countries. The perception parents have about the cause, diagnosis and treatment of children with Down syndrome is an interesting aspect that has a great impact on the development of these children.

In the light of different cultural point of view, biomedical and socio-cultural factors play a very important role. Betancourt & Lopez, 1993 explains that “cultural and familial factors are dynamic, non-static entities rather than “objective” social address variables impacting on child development”. The immediate family is the first teacher of a child and their relationship influences the child’s development. White and Hastings (2004), also adds that among other factors, “the maintaining of positive perceptions of the child, along with optimistic attitudes, gaining information in order further to understand the nature of the condition, fostering family cohesion, and identifying, and gaining access to, support services” are all important in the child’s development.

This is why parent’s perception about the child’s disability whether being biomedical or socio-cultural has a tremendous impact on the child’s development. While the modern context perceives biomedicine and other social problems as the cause of this disability, a purely traditional context perceives supernatural, magical, religious and metaphysical factors as the cause of this disability. This different perception affects the relationship between the child and the family and also influences the kind of treatment provided for the children.

This article therefore is based on a comparative study on the perception of parents of children with Down syndrome using the case of a modern context and traditional context. Also, evaluating issue of social stigma which puts the disabled child in an inbetween space.
In a typical traditional society, disability in general is not seen as normal thing. In most of these societies, disable people are not recognised as human beings but are attributed to different things. Not only do these societies have insufficient means of rehabilitating disabled people but they do not treat them as normal people and they suffer from chronic social stigma. This is also the case of children with Down syndrome. This chapter will present the case of Down syndrome children in a typical African traditional society where the people have a strong attachment to their cultural believes. Also examining how the people’s perception of the cause of Down syndrome affects their relationship with the child.

Down syndrome is a disability that has been realised only of recent in most developing countries including Cameroon. Though this disability has been diagnosed in this part of the world, Down syndrome children are still widely seen as abnormal children. In my own town, they are considered as witches. They are believed to have come back to torment parents for one reason or the other. I will like to give a brief story of a Down syndrome child who was my neighbour in my home town.
n the contemporary world of today, many people try to work very hard so as to meet the high expectations and competition. Disability is seen as an impediment notwithstanding the fact that many disabled people are crossing the disable line, though many still remain in luminal stage. Robert Murphy (1987) confirms this by pointing out that people with disability in general “exist in partial isolation from society as undefined, ambiguous people. They are neither here nor there, this is the case with the boy with down syndrome as he still suffers from stigmatisation.

Down syndrome is a form of disability that has being diagnosed in many countries all over the world. Measures are there for put in place to help these disable children develop. This part of this article is based on an ethnographic study on a family in Leuven with a child disabled by Down syndrome. The main issue here is finding out the perception of the parents towards toward their disabled child and how it affects their family. When a child is diagnosed of Down syndrome or any other disability the family goes through different stages; there is serious morning and regrets at the beginning, then refusal and guilt follows and finally the if the parents still want the child they then accept the child but some parents do abandoned their disabled children and they are sent to the orphanage. This procedure is also experienced in my case study.
In the two cases above these children though under different cultural setting do face social stigma because of their disability. In the first case there is total denial of the child by the entire community due to their cultural believes which eventually leads to the dead of the child. With the second case, the child is in a better situation though not completely accepted. The mother though under difficult emotional stress accepts the son and the father and the rest of the society around the child accepts the child from a distance. You see that the environment that a DS child finds himself do influence his development. Ben is in a society where there are basic necessities for children with such impediment though he is indirectly rejected while Blandine did not only lack the resources but was openly rejected. But Ben stands at a better position because he has a loving mother who is hoping to give him the best even when the society does not accept him.

This shows that attitude the society has about child with Down syndrome has not changed much because people still see these children as a burden and a disgrace to their parents. Their facial look also makes people to look at them in a funny way. Ben’s mother also explained that she felt really bad when people openly reject her son. For example, when they go to the park some parents will call back their children if they want to play with her son. She explains that it made her feel rejected herself. This is a stigma that she cannot run from she cannot abandon her no matter what the society says. Though in general people are being sentitised world wide about this disability, considering the child as a normal person is still very difficult. Most people still believe that these children with DS and other associate disabilities cannot grow to become independent and contribute to the economic growth of the society. They fail to understand that with the available resources these children can grow to meet their dreams. What they need is acceptance by all and a bit of patience due to their retarded nature to become full members of the society.

These children therefore find themselves in a luminal situation. They are in an inbetween situation in which though the society is making efforts to integrate them, they are still suffering from stigmatisation. They are therefore in an ambiguous stage which most of them including their families dream to come out one day.

Betancourt, H. & Lopez, S.R. (1993). The study of culture, ethnicity, and race in American psychology. American Psychologist, 48, 629-637.
Leonard, C.J. (1985). Brief outlines of the parent/family reaction to childhood disability in families from 3 ethnic minority groups. International Journal for the Advancement of Counseling, 8, 197-205.
Danseco, Evangeline R. (1997) ‘Parental Beliefs on Childhood Disability: insights on culture, child development and intervention’, International Journal of Disability, Development and Education, 44: 1, 41 – 52
Paul T. Rogers, Mary Coleman, Sue Buckley (1992): Medical care in Down syndrome: a preventive medicine approach. 327
Renu Jain, David C. Thomasma, and Rasa Ragas (2002): Down syndrome: Still a Social Stigma. American Journal of Perinatology/Volume 19, Number 2
White N. and Hastings P. 2004 Social and professional support for parents of adolescents with severe intellectual disabilities. Journal of Applied Research in Intellectual Disability 17 181-190
Mortier, Kathleen , Hunt, Pam , Desimpel, Lore andVan Hove, Geert(2009) ‘With parents at the table: creating supports for children with disabilities in general education classrooms’, European Journal of Special Needs Education, 24: 4, 337 – 354
Robert Murphy (1987): The Body Silent in America. New York


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