The impact on the family dynamic of having a child and sibling with Down syndrome

• Main Author: Webber, Heidi
• Format: Others
• Language: English
• Published: Nelson Mandela Metropolitan University 2011
• Subjects: Down syndrome; Children with disabilities > Family relationships
• Online Access: http://hdl.handle.net/10948/1441

The raison d'être of my research is simple: it’s about tossing one more starfish back into the surf. Down syndrome is not a disease, nor is it contagious or a death sentence (it only feels that way when you find out for the first time). At the moment of conception, the apprearance of extra genetic material results in a total of 47 chromosomes in every cell. Usually each cell has only 46, thus making an individual with Down syndrome far more like others than different from them. Yet, this extra chromosome presents special circumstances regarding their ability to acquire new skills, be it academic or practical, encompassing a specific learning profile with typical characterisitcs, strengths and weaknesses. Twenty-first century family life is simultaneously challenging and richly rewarding and the expectancy of most families are of a life lived on paved highways with well-marked signs, and rest stops never far apart. Adding an extra chromosome to the luggage sends the family travelling down a vastly different highway instead, not always knowing what is ahead. It’s scary, but in reality even those on the wide smooth roads do not know the future. Echoing the feelings of many parents, Leonard (1992: 5) states, “The trouble is that we have few, if any maps to guide us on the journey or show us how to find the path…” Assumptions from previous decades that used to increase stress associated with rearing a child with Down syndrome would negatively impact on individual family members and the family unit as such. This has made way for the growing consensus that it is not necessarily the norm. Whilst some families have trouble in adapting to the increased stress, other families adjust easier and even thrive. Successful adaptation seems more likely in resilient families who enjoy high levels of parental well-being and strong relationship bonds. Findings of this qualitative research study confirm that unresolved marital strains are more likely to result in divorce as opposed to the birth of their child with Down syndrome. Correspondingly, siblings of children with Down syndrome reported mostly positive impact than negated opportunities to participate in a normal childhood. My motivation for this research was to explore the nature of challenges faced by modern families and to provide mechanisms to facilitate positive adaptation for the family and aid vii inclusion of the child with Down syndrome into school and greater society. Recommendations are also presented for the medical professionals who, ironically, have proved to be the last people parents want to go for support, owing mostly to their decidedly objectionable treatment of parents; as well as the generally uninformed public, who seldom understand or support attempts of parents to include and expose their child to everyday experiences. In conclusion, I summarize: Should it be that I may influence but one person to see persons with Down syndrome for the potential that they hold instead of the associated problems of their condition, this would afford me the satisfaction and contentment knowing that I have succeeded in making a positive contribution to their plight. I would have successfully portrayed the families for the ordinary people they are with anticipations, aspirations and anxieties, but later tasting the elation of being empowered, and the resultant enjoyment and pride of the achievements of their extraordinary “starfish” child. The simple story below explains it all. A little boy was walking on the beach when he noticed scores of starfish washed onto the beach by the previous night’s high tide. He curiously watched as an old man bent down, came up slowly and tossed one starfish after the other into the surf. He went closer to investigate. “Excuse me, sir, what are you doing?” he enquired. The old man said: “I am throwing the starfish back into the ocean before they die, my boy…come, lend a hand”. The boy looked up and down the beach at the hundreds of starfish scattered along the shoreline. “But there’s too many…” said the boy, “it’ll make no difference!” The old man smiled, bent down, picked up another starfish, and carefully tossing it into the clear blue water, he replied, “…It makes a difference to this one…”