Perceptions of Parents With Down Syndrome

A COMPARATIVE STUDY ON THE PERCEPTION OF PARENTS OF CHILDREN WITH DOWN SYNDROME: THE CASE OF A FAMILY IN BAMENDA, CAMEROON AND A FAMILY IN LEUVEN, BELGIUM

ABSTRACT

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.

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This article is based on evaluating the perception of parents with Down syndrome children within an African context and a Western context. Case study for the case of African will be based on my experience with Down syndrome children in Bamenda and other available literatures while that of the West will be based on ethnographic study with a family in Leuven. This research will examine the different views on the causes of Down syndrome and how this influences the relationship between the Down syndrome child and the family. Also, this article will analyze the type of treatment provided in these different cultural setting.

INTRODUCTION

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.

OBJECTIVES

Main objective

To evaluate a comparative study on how different perceptions due to different cultural believes affect the development of Down syndrome children.

Specific objectives

• To assess what the parents believe to be the cause of this disability.
• Investigate the type of treatment they give as a result of their different perceptions.
• Compare the social stigma faced DS children in the different cultural backgrounds.
• Finally to analyze the impacts of these diverse perception on the child development.

RESEARCH QUESTION

How do the perceptions of parents of children with Down syndrome affect the child’s development?

METHODOLOGY

The perception of parent of children with Down syndrome is an interesting issue with diverse perceptions. These diverse views are influenced by different socio-cultural environment. All of these views have necessitated a multi- approach in collecting data for this article. The methodology therefore was divided into two parts considering the different cultural settings;

Data Collection

These included the ways in which data was collected from the field. Questionnaires (individual depth interviews), unstructured interview, key informant interview, lectures from class, group discussion, and participant observation were used to collect data from the family with the Down syndrome child in Leuven. I visited this very welcoming and hospitable family seven times and I was allowed to be an active participant observer.

While the source of data for the traditional setting in Cameroon came mostly from past experience with the families of children with Down syndrome in a typical African traditional setting and also secondary data were used to collect data. The particular case I used was a child in my neighbourhood.

The Perception of Parents of Children with Down Syndrome in a Tradition African Society

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.

This young girl got married and became pregnant and had a normal pregnancy. She was a hairdresser and her husband a bus driver. During her pregnancy she was always advised not to walk at night because it is a common believe that pregnant women should not walk at night or else they will be possess by evil spirits. This woman’s job made her work late into the night and she had to trek back home every night from work. When she finally gave birth to a girl called Blandine after her due period, the first thing she noticed about Blandine is that she did not cry immediately she was born. This was abnormal but the doctors said she was ok. The child stayed in the incubator for about two weeks because she was not very active. As Blandine grew we discovered that she was not very active like other children. It became clear when she was about 5months because by then she could not seat not to talk of creeping. She started creeping when she was around 9months which was a very slow rate of growth since she was actually suppose to be standing and trying to walk. Her growth rate was relatively low. Being in a traditional society with strong cultural believes different reasons where attributed for the cause of her retarded growth.

When the child was 4months due to this slow development the mother consulted a woman who had being a traditional midwife and she was advised to use the bone of an elephant to strengthen the legs of the child and also to apply “mbuma oil” which is oil from a particular type of snake. She used all these but there was no improvement. The child’s parent visited several other traditional herbalists who said different stories. Most of which said she had being possessed by an evil spirit since she walked late in the night during her pregnancy. For them the only thing she could do was to keep the child near a river so that she can return to where she came from. It is a common believe that when you place such children near a big river, after some rituals they turn into snake and return to the water where they came from. For Blandine’s parents it was very difficult to do such a thing to her, though this perception greatly affected their relationship with their daughter.

At the age of 2year, the child had really grown very big and could not be carried around since she could not walk and there were no baby carriers to carry her. She was always abandoned at home alone for hours. We always heard that when she is alone she will play with other invisible witches or evil spirits. There were perceptions that some of these children turn into old people and eat all the food in the house when they are left alone. We always heard very strange stories about these children which frightened us and people around could hardly accept to carry the little girl. Other pregnant women never went near her because they feared she could possess them too. Other parents also restricted their children from going close to the girl. She was not treated like other children and was always neglected. What worsened the situation is the fact that she was always sick too. The general perception was that she became sick only when her father had money in other that the money will be spent on her. The parents hardly took her to the hospital but often to a traditional herbalist who will demand several things in cash and kind. Other family problems between the couples were attributed to the child.

After she had reached certain age, the coupled tried to have another child to no avail. It was therefore believed that this evil child had blocked the woman of the mother. She was always insulted and asked to go back to where she came from. They coupled had serious marital problems since they couldn’t get another child knowing the importance of children in an African context. This little girl was never considered as a child but a burden and disgrace to the family. They family members and neighbours hated the child with much passion. Moreso, the child was maltreated because it was a common believe that if you treat such children well they will still come back if they happen to die and when you give birth to another child. So she was badly treated. The worst came when the father became seriously ill and finally died. All these considered as ill lock was attributed to the child and the hatred increased. At the age of 4 this little girl will be abandoned alone, she played alone and you could find her smiling to herself. All we knew was that she was smiling with her people of the spirit world.

This little girl became very sick finally died at the age of 4years 3months merely due to ignorance and negligence. Before she died on the several visits to traditional doctors, she had being given a mark on her face. This mark will identify her if she should come back again. The mother was cleansed and purified by a diviner to prevent the child from returning. About a year later the mother became pregnant with her new boyfriend and according to them it was really the disabled child that blocked her womb. The little girl might have died of any of the diseases faced by children suffering from Down syndrome. She might have had one of the following; congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions which are health problems associated with the disability. With such less medical care this health problem might have generated into a chronic disease which is what killed her. But due to the socio-cultural perception of the community in which this child found herself it was not discovered.

The above therefore shows how the perception of these parents and the social stigma attached by community in general led to the untimely death of this little girl. This story is common in many parts of Africa especially in some rural areas where some of these children are even killed. Cultural influence has therefore a great impact on every disabled child’s development.

The Cameroon government and Non Governmental Organisations are trying to educate families and communities of children with this disability. Much still has to be done because sensitisation is mostly done in the urban areas, the people in most rural areas are still left with their traditional perception of this disability and many other disabilities. They still consider disability to be some sort of curse caused by supernatural and other mystical factors.

An Ethnographic Study on the Perception of Parents of Children with Down Syndrome in a Contemporary Society

In 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.

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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.

This is a family made up of two children, a girl who is the first and a disabled boy called Ben. The mother is a teacher and the father a banker. Ben was born in June 2004 with 2.9kg through normal delivery. At birth the obstertrian had suspected he had this disability because of his facial looks and other associate symptoms and a week later he was diagnosed of Down syndrome. The mother too explained that before then she too had noticed that her son had a facial look which was not very straight like her first daughter had. The doctor explained to them the cause of the disability. And after carrying out a genetic counselling to find out the origin of the translocation, it was discovered that the extra copy of the chromosome 21 was from the mother. The doctor explained to them that this was possible because of the maternal age of child birth. The mother had the second child when she was 42years. At the age of 40 the woman has the chances of 1 in 100 and the chances by the age of 42 increases to 1 in 60 which was the case of this family.

I asked the parents what their reactions were when Ben was diagnosed of this impediment. The mother responded:

“I was very shocked and deep within I felt really bad knowing that the fault was from me but what consulted me was that our son was just disabled and not sick. What made me mad with the doctor is that why was this disability not diagnosed during my prenatal checkups, that will have prepared me psychologically”

Most parents hope to have abled children who will meet their future dreams of becoming independent successful men and women. It is always very shocking when they are told these dreams cannot be met because their lovely kid is disabled. Most tend to blame the doctors at first for one reason or the other. In any case though also shocked, this woman’s response was a positive one because just knowing that the son was not sick was a good beginning coupled with the fact that she knows she is part of the cause of the son’s condition. This goes in line with Danseco, Evangeline R. (1997) who explains in her article that “mothers who blamed themselves of their child’s disability had less caretaking difficulties and less mood disturbances; they also had more positive scores on scales of emotional and verbal responsiveness, organization of the physical and temporal environment, and maternal involvement with the child”. This is the exact situation of this family because the mother looked at the situation as something she could handle especially when she later explained that she was obliged to attend the numerous counselling sessions which has greatly helped her relationship with her son. For the mother it was not a permanent situation but temporal though she knew that it was a gradual process which needed a lot of patience as the doctor explained to them. She believed that this is the period when Ben needed much love and concern. The mothers perception of Ben’s condition was however different from the fathers.

“It was more than a shock to me, I had wanted a son who will grow to be like me or even better than me. In my heart at that moment I knew that no matter what, the situation was irreversible, because growing up we had a boy in our neighbourhood about my age who had the same problem and never developed much”

The story about his neighbour could have been true because before the 1980s there were less parental support and the quality of education with Down syndrome children was not the best as it is today. Paul T Roger et al 199 acknowledges this by saying that “there have been so many changes in the quality of parent’s support, the education offered and public acceptance and attitude”. According to the father this diagnoses greatly affected his relationship with his son. He knows from his own past experience that not much could be done. He confessed that from that moment the love he had hoped for the son greatly reduced. He was very reluctant to take their son home when he was discharged from the hospital. The elder sister too had her own perception. For her she had wanted a kid brother or sister for a playmate and someone she could confined in. If her brother was diagnosed disable it means he will not be very active to play with her as she had hoped. She felt sad because she knew she will be lonely again with no kid brother to play or confine in. All these were the family’s perception immediately the child was diagnosed. These different perceptions affected their relationship with Ben at home.

The Relationship At Home

As Ben grew old the family interaction also changed. Things were not the same as it used to be with their first daughter. Knowing that there is a person who cannot do anything for himself had to affect the lives of those who were close to him. The mother especially was affected. She said,

“My whole life changed, I had to do all my best to please my son. This also will make me happy and be appeased with myself”.

For the mother she continuously blamed herself for the child’s condition. Therefore taking care of the child despite all odds was not a problem for her. As a teacher, she continued her teaching practise at home by teaching her son and being very patient with him knowing that he is a very slow learner. She is also involved in much reading on issues concerning Down syndrome. She has also made friends with another woman whose daughter also has the disability. These two women often discuss to find out how their children are improving. The learn development skills from each other which will help their children especially when it worked out for one. Ben’s mother confirmed that the other lady has given her much hope since her daughter is older and has greatly developed. She always advised her on what to do especially concerning the health and hot temper of the child.

As a result of his disability his major health problems are dental problems and feeding difficulties. He has to be taken to the dentist at least once a month. The mother explained that it is her job to do that. The father stays most of the time away from their son unless on very rare occasions when the mother cannot make out time. But when it comes to something concerning their daughter he is very fast in reacting. When I tried to discuss with the woman that maybe is it just for the fact that fathers are attached to their daughters more than their sons, she explained to me that the situation worsen between the father/son relationship only after he was diagnosed. She also added that the husband was very excited when he knew he will have a son and was loving and caring before the diagnosed the child of DS. Though things have improved now considering the condition the wife explained to me she went through, you can still see the lukewarm attitude of the father when you come very close to the family especially when the daughter is around. The third time I visited the family, it was on a bright and warm day and they were having some outdoor activities. I noticed that the father played more with the daughter than the son, and the mother though playing with the two children paid more attention to the son since according to what she said “he is a delicate person and I have got to be very careful with him so I always have to keep an eye on him”.

You see that the perception of Ben’s disability has divided the family somehow. While the mother considers herself to be the cause of the child’s situation and wants to do all she can to please the child and herself, the father has less time for him knowing that his condition can hardly be improved and he is more attached to the daughter whom he believes has a brighter future. The mother of Ben explained to me that the situation between her the husband and the son is even much better now. She said that immediately after the diagnoses, the father could hardly even carry the baby boy. It was so serious that she complained to their doctor and they had to go for counselling on several occasions for the situation to improve upon. She explained that there were moments that Ben will even cry when the father came closer. Ben grew to know and love the mother more. The love the mother and the son shared helped the son to develop much. During his happy moments he quickly learns whatever he is being taught and will hardly forget it especially if it’s from his mother. The sister also showed him some love though it was restricted because he became very violent at times especially when they are playing games and he wants things to be done his own way. This made her stay away from him. Ben loves watching cartoons, tries to read story books with pictures and most interestingly enjoys exploiting the internet.

The Family’s Daily Routine and Its Impact on the Disabled Child

In the morning everybody tries to get up at 7am. Before the boy tends 3years he used to get up only after 9am. Because of that the mother had to shift most of her lessons to begin from 11am so that she will be sure to go to school early. She had to take him to the child day care every morning after a long fight with him in the morning. While the father takes their daughter to her school at 8pm she stayed behind to clean up the son and persuade him take breakfast. Eating was a problem for him because the mother had to force him to eat every morning. She explains that there were moments that he will cry and become so violent that she also got angry. The few times she had lift him with his father Ben had hardly ate anything because the father was not very patient with him. After work the father or the mother picks the children depending on who is early that day. There are days that they go for sport in the evenings especially in summer. They also go for counselling and special instruction teaching. The mother always tries to be present during the sessions because they are taught how to improve on their child’s language, how to make him independent, improve on his cognitive level and social skills at the level of the family. The father attends it just a few and only when the mother really insist he should come with her.

After the age of 3 he was enrolled in a special school for children with such disability so the daily routine in the house had to change. They had to teach him how to get up earlier and he was forcefully pulled out from bed especially during the first few months. The name of his school is where there are other children with such disability. Ben is in a class of 15children and the teacher tries to make the lessons very interactive. In class he has a cordial relationship with his classmate since all of them have almost the same reasoning capacity. The teachers are very patient with them though some of these disabled children maybe very violent. A solid relationship at home and in school will help the child to develop more. Children with this disability who have a very supportive family develop faster than those who do not. Ben’s mother added that if the father had put in much effort as she has done their son would have been perfect. He needed their full support, patience and tolerance.

The mother says that with time she will like her son to attend a general education school. Ben is very interested in computer issues and the mother believes that he can become a great computer scientist and she is doing all her best to encourage him. Ben’s mother also explained that when Ben goes to the general education school she will hire a teacher from the special education school who can give him three hours a week of extra support classes. He will also continue to attend the rehabilitation centre classes for two hours a week for his speech, physical and occupational therapies like computer, since he seems to be very interested in computer. Most parents with disabled children today prefer their children to attend general education schools. They believe that these children will develop more in such schools since they face challenges with normal children, they will also fight to be like them. Most governments are therefore trying to encourage inclusive education for these children. In Flanders (Belgium), inclusive education for children with significant cognitive disabilities has been emerging in a process of gradual change at the individual, systems, and policy levels for the last 15 years (Van Hove, Mortier et al. 2009).

CONCLUSION

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.

REFERENCES

• 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