Introduction
This paper seeks to establish information on the mechanisms, which parents apply in handling children diagnosed with Down syndrome. This is in connection with teaching and educating children with Down syndrome. For some time now, there has been little awareness to parents with children suffering from Down syndrome on how they can deal with their children especially when it comes to teaching and educating.
Most parents will leave these duties to specialists and other supervisors in this field because they do not know their contribution towards such cases. Down syndrome is a chromosome disorder characterized by an extra chromosome number 21(Trisomy 21). Down syndrome, which is a relatively widespread birth defect, causes multiple malformations, mental retardation, and a characteristic face.
Objectives
This study aims at showing people and especially parents with exceptional needs solutions and options to broaden their choices in providing a healthy normal life for the child. The focus of this research will be on children with Down syndrome, show how perfectly it is to raise and educate a child who is diagnosed with this disability at home with no need for a specialist’s supervision.
This also outstanding by clearing a misconception that educating and taking care of children with this disability starts from home, not at school as some people may think. With only a little bit of awareness about this disability parents can raise children with Down syndrome just like normal children? The question this research is aiming to answer is how could parents teach and educate children diagnosed with Down syndrome.
Literature Review
Parents with disabled children have always faced anxiety and coping struggles with their exceptional children, it is already hard, raising children but to have a child with particular needs requires resources and a healthy positive mental state to make the lifestyle less anxious for both the child and the parent.
However, in reality when research was conducted coping with disabled children and keeping that healthy attitude is not as easy, so this research aims to understand the stressful reality of families with disabled children in the Saudi mainstream with the different factors and limitations that make this experience more stressful than parents who live in other regions.
Research tells us that parents have a high level of distress found up to 70% in mothers and 40% in fathers for severely disabled children, in addition the general psychological literature, and specific studies of disabled children show that the parental distress and family lifestyle affects the child’s behavioural, social and cognitive functioning and development to the worse or better, also levels of stress are related to how the family surrender to the limitations of their child and let it control and dominate their life, on the contrary optimistic attitude tends to show lower stress levels (Byrne & Cunningham & Sloper, 1988).
In a research on family adaption, coping and resources for disabled children stated that lack of resources and financial problems adds more stress and mal-adaptation to the family, because with financial support the family can contact immensely powerful programs to help them provide an almost normal life for their child in terms of education, discipline and even cognitive neurological checkups (Dykens, Hodapp & Finucane, 2000).
The research used The Family Stress and Support Questionnaire to gather data concerning issues parents encounter in raising children with disabilities, but out of 17 issues the research concentrated on two items, which are the interaction with family, friends and neighbours and the interaction and communication with different professionals and doctors.
The results of this research matched the results of others that emphasized the importance of coping strategies and perceptions in reducing the stress of the parents. More specifically this study revealed that strategies involving a healthy optimism, cooperation and family integration were strongly associated with reduced stress.
The research also found that the behavioural problem itself is not the indicator of the level of stress but the severity of that behaviour and frequency is what influences parental stress. In addition, the assessments used to convey these results were rating scales so they are not as direct as other measures, which are an appropriate measure to use for future research in this topic to yield different results.
More research in this area should examine the different developmental stages of the child in association with different stress levels and duration, also select a wider number of participants to reveal more accurate statistics, also the concentration on a specific population would give more understanding on how the culture plays a prominent role in influencing such cases and, therefore, showing different stress levels according to culture or society.
Methodology
In research, information can be from primary or secondary sources. Primary sources of information involve first hand information obtained using interviews, questionnaires, and observation. In this paper, most of the information is from a primary source. The method in use in this paper is a qualitative method; data will be collected from a case study of a Saudi family with a son who is diagnosed with Down syndrome.
This will be by interviewing the mother and her child after signing an informed consent for reasons of the research and previewing professionalism and confidentiality to further understand the experience and struggles mothers undergo. The methods in use will also reveal the role of the father in supporting such a problem with minimal knowledge and resources.
Discussions and Results
In trying to understand the families’ ways of dealing with their child, we gathered much information from the mother, father and child. It can be more traumatising to parents of a child with this condition who did not plan their pregnancy and may not be aware of the main cause for the condition of the child. In the event, the pregnancy was not planned for the parents may link the condition of the baby to other factors like contraceptives not knowing that it is Down syndrome.
In this case, the family had prepared to have another baby when the couple was in their late years. At the conception of the child, the mother was 39 years while the father was 45 years and the gap between the last child and this conception was five years. One of the risk factors in having a child with Down syndrome is the maternal age of the parents. In this situation, the parents need to have been aware that the chances of the coupe having a child with Down syndrome were high because the mother was above the age of thirty years.
The risk factors of having a child with Down syndrome include advancing maternal age, being carriers of the genetic translocation for Down syndrome, and having a child with Down syndrome. In the case of the Saudi family, the mother’s age was above 30 years. A woman’s chances of having a child with Down syndrome increase with age.
The reason behind this is with age older eggs have a greater risk of reprehensible chromosome division. Statistics have it that out of four hundred women above the age of 35 years one of them will give birth to a child with Down syndrome. In this case, it is noteworthy that parents are aware of their chances and the doctor can monitor the progress of the baby so that they can know of what to expect (Jones & Passey, 2005).
In being aware that conceiving at an older age for the woman may lead to giving birth t a child with Down syndrome, parents can prepare both psychologically and physically for the child. Most parents find it difficult to deal with Down syndrome children because they did not prepare for them and this situation gets them off guard. From the response, of the Saudi family they were not aware of the condition or possibility of the Down syndrome occurrence.
Despite the mother, attending all the anti-natal care needs, the tests did not reveal anything and neither did the doctor detect any abnormalities. As much as the mother was aware of the dangers of conceiving at her age, the doctor kept on assuring her that everything was okay and the that the pregnancy was normal.
The only notable abnormality was noted when the pregnancy was eight months old as the weight of the baby was less compared to the normal weight. Therefore, the parents did not have the idea they could have a child with Down syndrome. This is evident in the way the parents tried to detect other diseases and conditions that the child could be suffering from and not having Down syndrome in mind.
At birth, the child developed heart problems and the parents took the child for the tests except Down syndrome. Most parents do not believe in the option of them having a child with Down syndrome and will, therefore, try to relate the first signs of this condition to other problems but not Down syndrome.
This, in turn, makes exceedingly few parents to know mechanisms in which they can teach and educate their children with this condition. Down syndrome condition has impacts on both the intellectual and physical development of the individual and it calls for individual attention to the patients. In addition to the physical malformations, the intellectual handicap from Down syndrome is a serious issue to parents.
The intellectual problem of Down syndrome children is not evident in the early years of their lives but in the later stages of development. For this reason, the children will not develop as normal children and will require exceptional care from their parents and caregivers. There is a notion that these can only be done by specialized people and caregivers. This is not true as any parent can learn how to handle his or her child irrespective of their condition (Selikowitz, 2008).
Educating and teaching children with Down syndrome becomes an easy task when the parents get enough support from the relevant people. For instance, the news that their children had Down syndrome was devastating to the parents considering they did not expect this of their child.
In this society, the duty of taking care of the children lays most with the mothers as the fathers play the role of breadwinners. The difficulty of dealing with Down syndrome children comes when the mothers do not get enough support from their husbands. This is a responsibility that calls for both parents to play and in supporting each other; the parents can learn more ways of teaching and educating their child. In the end, there will be no need for employing the services of a specialist in dealing with the child.
Having support from the spouse will improve the way in which the parent will cope with a child with Down syndrome. The reason as to why the level of stress increases in mothers attending to Down syndrome children is the fact that their husbands distance themselves from the family leaving them to be the only parents to children.
Another notable coping mechanism for parents dealing with children with Down syndrome is talking about the issue with other people. Most people will opt to keeping the situation to themselves in most severe cases parents hide these children. Lack of being open about the situation of the Down syndrome child limits the ways in which the parent can obtain information on how to deal with the children.
Regarding the information of the Saudi family it took, them time before they could reveal the condition of their baby to other people. The parents only informed other family members but not the people dealing with the baby on a daily basis. This is dangerous as children with Down syndrome need exceptional care and cannot be taken care of in the same way as other normal children. Informing other people about the condition of the baby is paramount, so that other people can know how well to cope with the child.
Hiding or not revealing the condition of the baby only makes matters worse because the caregivers will not understand some of the characteristics of the child. In order for a parent, to cope well with a child with Down syndrome it is necessary that he or she becomes open to people about the condition of their child.
The major reason as to why parents with children with Down syndrome fear revealing their condition is for fear of stigmatization. These parents want their children to be categorized as normal, and yet they know that their children are not normal. Some families may associate these conditions with other elements like witchcraft hence the parents chose to keep mum about the issue.
The family in this case waited until their child was five years old that they let everybody know about his condition. At this age, the child may have already undergone stigmatization due to lack of knowledge on the part of the other people dealing with the child. It is, therefore, essential that parents be open concerning the condition of their baby, as this will improve the way in which they deal with their Down syndrome children.
Being open about the condition of the children will call for support from other people especially those dealing with the baby on a daily basis. Family and friends can be instrumental in coping with children with Down syndrome. For instance, in the case of the Saudi family the other members of the family turned out to be supportive of the child especially the youngest child.
Most of the learning the child with down syndrome has gotten from the seven and a half brother who keeps involving him in his play. As much as the other family members know about the condition of their brother, they do not treat him differently, but help him in his growth and development.
The extended family can also be supportive as long as they are aware of the child’s condition. In so doing the parents can come with better coping mechanisms and; hence, bringing up the child in a friendly and receptive environment. Increased support from the people around the child creates a positive environment for his or her growth and in most cases; the people learn how to handle the child without discrimination and stigmatization.
Lastly, the parents can cope with the condition by getting as much information in connection to the condition. Since most people are not aware of the condition, there is less information concerning the condition in most countries. It takes travelling to other established countries to even detect Down syndrome in a child, which means there is also less information about the disease.
It is notable that parents with children with Down syndrome get access to information concerning the condition so that they understand the growth and development of the child. The availability of information makes it easy for one to understand and deal with the situation and the child. Information can be in various forms for instance through books, the internet, physically through doctors, and other organizations.
Psychological help is also needed especially to the parents and other people in the child’s life. Through counselling and therapy, the parents can easily accept the situation and instead of basing so much on the negative side, they can use the energy to help the child.
Having a child with Down syndrome is not an everyday occurrence and may be depressing to parents and the people staying with the child. The availability of psychological help enables these people to cope with the situation bravely, and in turn help the child to grow (Ranad, Mona & Reem, 2005).
Coping with a child with Down syndrome requires several mechanisms because it is dealing with a person whose physical and intellectual state are not stable. For instance in the case study, the child is extraordinarily weak having undergone an open-heart surgery at six months of age.
Such a child will need exceptional attention and care including the food he eats so that he can be strong enough to develop and grow. In teaching and educating, such a chid requires information and support from every area of life. It is notable that the family members know the condition of the child so that they can offer the right support and advice to parents.
This can be by playing with the child, feeding the child, educating and teaching the child. The view of leaving the work of teaching and educating a child with Down syndrome to specialists needs to stop as this can start from home. By family members playing and interacting with the child, they will be educating the child on the basics of life and the rest they can get from school.
Conclusion
Down syndrome is a condition that can occur in any child of any family, and this makes it indispensable for everyone to have information regarding the condition. People need to know the causes of Down syndrome and how to deal with children having the condition.
Interacting with the child with Down syndrome is the main mechanism of coping with the situation. By regularly interacting with the child, we provide a positive environment in which the child grows and develops. This, in turn, will be a way of teaching and education a child with Down syndrome and hence, reduce the notion that these cannot take place at home.
Being open about the situation is also another way in which parents can easily deal with children suffering from Down syndrome. Revealing the condition to other people especially family members enhances the support one gets in dealing with the child also increases the child’s acceptance in the family. In so doing, people will be ready to understand and help the parent in coping with the child with Down syndrome.
In the event, parents become aware of the several methods of dealing with children with Down syndrome the availability of information concerning the condition will increase. It is, therefore, noteworthy that parents accept the occurrence of the situation as a first step of dealing with children with Down syndrome.
References
Byrne, A. E., Cunningham, C., & Sloper, P. (1988). Families and their children with Down’s syndrome: one feature in common. New York: Routledge.
Dykens, E. M., Hodapp, R. M., Finucane, B. M. (2000). Genetics and mental Retardation syndromes: a new look at behaviour and interventions. Virginia: Paul H. Brookes Publisher Company.
Jones, J., & Passey, J. (2005). Family adaptation, coping, and resources: Parents of children with developmental disabilities and behaviour disorders. New York: Cengage Learning.
Ranad, K., Mona, F., & Reem, H. (2005). The Coping Mechanisms of Parents with Down Syndrome. New York: Routlege.
Selikowitz, M. (2008). Down syndrome. London: Oxford University Press.