The Impact Of Down Syndrome On The Individual And Their Family
Abstract
This paper explores seven published articles that report on the psychological and sociological impact of Down syndrome for the individual and their family. Parents discuss the many familial effects of having a child born with Down syndrome. Most parents report having a child with Down syndrome as a positive experience while other parents report having a negative experience. Included in this paper are two studies, one conducted by Janet Carr of St George’s Hospital in London, UK, and the second by Skotko, Levine, & Goldstein about the advantages and disadvantages of raising a child with Down syndrome. Although many individuals living with Down syndrome have made great strides in life, there are still many challenges they will endure daily.
Down syndrome is a chromosomal condition that occurs in approximately 1 in every 700 pregnancies. The chromosomal condition occurs when an error in the cell division results in a full or partial extra copy of chromosome 21. The additional gene affects the individual’s physical features, intellect, overall development and causes distinctive characteristics associated with an individual with Down syndrome. The common physical characteristic of Down syndrome is low muscle tone, a flat nasal bridge, short neck, upward slanted eyes, short stature, small ears, wide space between eyes, and protruding tongue. Developmental delays are common characteristics such as speech delays, difficulty thinking and understanding, and intellectual disabilities. Conditions and disorders commonly associated with Down syndrome are hearing loss, hypothyroidism, immune disorders, leukemia, dementia, blood disorders, gastrointestinal defects, and obesity.
The cause of Down syndrome is still unknown. There is no definitive scientific research that indicates how Down syndrome is caused. The only factor that has been linked to Down syndrome is the mother’s maternal age. Women older than 35 years old are more likely to give birth to an infant with Down syndrome.
People with Down syndrome have a wide variety of capabilities. Children born with Down syndrome can usually do the same things as any other child such as walk, talk, potty train, and dress themselves. The only differences between children born with Down syndrome are they accomplish these functional tasks at a later age than other children. Early interventions such as physical therapy, occupational therapy, and speech therapy are best to help a child reach their full potential of development.
The outlook for adults living with Down syndrome has changed dramatically over the last decades. In the 1900s, individuals with Down syndrome weren’t expected to live past 1o years, now many are living well into their 50s and 60s. This change in life expectancy has allowed people with Down syndrome to have a more active adult social life that includes dating and eventually marriage. People with Down syndrome rarely have children due to a reduced fertility rate. Most men with Down syndrome cannot conceive any children and the women have a 1 in 2 chance of conceiving. Unfortunately, if the woman does conceive the pregnancy will most likely end in a miscarriage.
A common misconception about people who have Down syndrome is that they are always happy. The reality is, individuals with Down syndrome are more like everyone else than they are different. Everyone has different feelings and moods, and just like the general public, adults with Down syndrome must have adaptive life skills, work skills, and educational and social opportunities. It was believed many years ago that individuals with Down syndrome would not be able to work and live independently. Now many individuals with Down syndrome are employed and have independence with little assistance from family or that state. Even though individuals with Down syndrome have made great strides there still are many challenges they still endure daily. Living with Down syndrome not only affects the individual personally, but it also affects the daily lives of their family and friends.
When expecting parents first learn their unborn child is diagnosed with Down syndrome, it can be devastating news. Some couples are plagued by the life-changing decision on whether to continue or terminate the pregnancy. In the study Having a Son or Daughter with Down Syndrome conducted by Brian G. Skotko, Susan P. Levine, and Richard Goldstein (2011), the majority of parents surveyed reported being happy the chose not to terminate their pregnancy and expressed pride and unconditional love for their child. Parents also report feeling their outlook on life is more positive because their son or daughter has Down syndrome and report being comfortable with answering questions that pertain to their child’s disorder. Many parents described learning patience, acceptance, and unconditional love. While some parents have become advocates for their children by fighting for their rights and being their voice box.
A small percentage of parents report having a more negative experience, feeling like life isn’t fair and daily life is miserable. When it comes to the parent’s social life, some parents feel most of their friends will either disappear or pretend to be nice to their child while harboring prejudice and bias feelings. Some parents reported feeling embarrassed their child has Down syndrome and regret not terminating the pregnancy in utero. Stating having a child with Down syndrome will exhaust you, challenge you, a subject you to discrimination. The stress of having a child with Down syndrome has also been attributed to causing marital stress and divorce, but contrary to belief, statistics show lower divorce rates for couples who have a child with Down syndrome compared to couples with a non-disabled child. This fact is attributed to the parents being older, more educated, and married before having children.
Studies have shown the positive impacts of having a sibling with Down Syndrome. Growing up with a sibling who has Down syndrome can present unique challenges and opportunities for growth and character development. Siblings tend to be helpful and empathetic due to their awareness of the difficulties their sibling may have to face. Parents frequently note that the non-disabled siblings tend to have a high tolerance of acceptance when they have a sibling with Down syndrome. Siblings develop patience at a young age and learn how to simplify tasks into smaller units. There is also is an appreciation for one’s own life. The non-disabled siblings often learn early on to appreciate their health and abilities and not to take the simplest things for granted. Although most siblings have a positive experience with having a brother or sister with Down syndrome, studies have shown some siblings face a lot of challenges and some disadvantages.
The more challenging or negative impacts on siblings can vary from parental neglect to peer acceptance. Children with Down syndrome need a lot of care physically, emotionally, and financially. Parents may often have less time and energy for the other children which could lead to anger and resentment. Siblings are often frustrated with excessive rules and restrictions such as keeping doors locked and closed, keeping small items out of arms reach, and any other rules due to having a sibling with Down syndrome. The financial cost for a child with Down syndrome can be high, resulting in the other siblings going without. Parents may not be able to afford educational expenses, recreational activities, holidays, and material goods. Many brothers and sisters have a hard time coping with the emotional challenges that come with having a sibling with Down syndrome. The siblings may not have friends over to their house due to misunderstandings, biases, and insults toward their sibling with Down syndrome. Ultimately, the lack of peer and adolescent norms can often lead to siblings mourning the loss of not having a “normal” sibling relationship.
A study conducted by Janet Carr focused on the wellbeing of the parents and siblings, and focused on their health, social life and friendships. Data was collected from groups of families who had a member with Down syndrome and a control group of non-disabled family members. Each group was followed from infancy to age 40. Participants were the families of 34 surviving 40-year-olds with Down syndrome, of whom 21 had at least 1 parent, 7 fathers, and 18 mothers still living (Carr, 2008). There were sixteen families in the control group, 14 fathers and 14 mothers were still in the study. Earlier in the study, mothers were asked to rate their own health. Two-thirds of those in the Down syndrome group and half the control group stated their overall health was good with the minority saying it was poor. The Down syndrome group had 5% of the mothers feeling run down, 29% depressed, 17% felt both, and 67% felt neither. The control group had 7% of the mothers feeling run down, 7% depressed, 29% felt both, and 57% felt neither.
The mothers were asked about their social life, friendships, and how often they went out on their own. When surveyed on how often the mothers went out 1 or more times a month, mothers of the Down syndrome group went out 23% of the time accompanied, 50% alone, and 60% to clubs. Mothers of the control group had 58% accompanied, 50% alone, and 55% to clubs. When surveyed if they would like to go out more often, 35 % of the Down syndrome group and 20% of the control group said yes.
The mothers were surveyed on outside friendships and the results revealed 42% of the Down syndrome group had none to a few friends with 26% having many friends. The control group revealed 53% had none to a few friends with 40% having many friends.
Data on the fathers and siblings were provided from information supplied by the mothers. The findings showed the fathers and siblings to be well adjusted and without strain. The brother and sisters have continued into adulthood with good relationships with their sibling with Down syndrome, averaging more contact with them compared to the control group siblings. The mothers who reported being less social and having zero to a few friends scored higher stress scores than the more social mothers.
In conclusion, the impression of families with a child who has Down syndrome is one of normality. Factors that influence the wellbeing of the families and siblings of a person with Down syndrome are largely the same as those that influence any other family. It should not be assumed that family members are at risk of psychological issues due to the single fact one member has Down syndrome. Most research has found many of the families to be satisfied with life with relatively normal levels of stress contrary to the minority whose experiences were negative. Overall, the majority of families expressed feeling the child contributed positively to the family.
