FAMILY PERSPECTIVES OF DOWN SYNDROME


Families of children with Down syndrome often grapple with others’ misconceptions about the challenges and rewards that they might negotiate from year to year. Many assume that life with a child or sibling with Down syndrome primarily brings about additional stress or even dysfunction within a family unit—a perception likely reinforced by several early studies on such families, which did mainly focus on the negative effects on marital relationships, social interactions, and mental health that family members of a child with Down syndrome might experience. Certainly, there are special difficulties these families face that are important to identify, but recent studies have shifted focus to show that, on a large scale, a family’s experiences with children and siblings with Down syndrome are much more positive than earlier studies and perceptions might have one believe.


These misconceptions are important to address, especially with the rise of noninvasive prenatal testing (NIPT), a procedure in which a blood test administered to a pregnant woman analyzes her unborn baby’s DNA and assesses its chance of being born with a number of genetic disorders, including Down syndrome. While this test affords expecting mothers more information than ever before, members of the Down syndrome community worry that expecting mothers, when presented with the knowledge that their babies


would most likely be born with Down syndrome, might indiscriminately choose to terminate their pregnancies. A 2015 study conducted by Emily C. Higuchi and colleagues showed that, indeed, the rise of NIPT may inadvertently increase negative attitudes toward individuals with Down syndrome, supporting the fears of those who are concerned about the impact of NIPT on the Down syndrome community.


Armed with this knowledge, a number of organizations have endeavored to provide expecting mothers with a fuller description of life with a child with Down syndrome. Testimonials and studies in recent decades have shown that the vast majority of parents and siblings of children with Down syndrome are overwhelmingly proud and supportive of their children, and the presence of a child with Down syndrome in a family in fact often leads to a higher familial emotional “resilience” as compared to other families. A study by Cliff Cunningham published in 1996 showed that, for instance, the divorce rate of American couples with children with Down syndrome has always been lower than the national average. Siblings of children with Down syndrome, furthermore, often display higher levels of maturity, acceptance, and social literacy than their peers. Parents also report that, since having their child with Down syndrome, they and their typically-developing children were “less concerned with trivia [and] less materialistic and self- centred” than they had been before.


This is not to say that, overall, there are not moments of difficulty and transition for families of children with Down syndrome, especially as their children get older. As these children enter their teenage years, parents increasingly report strain on their lifestyles, likely because children with Down syndrome often don’t quite achieve the same degree of independence as do their typically-developing peers. Studies have shown, moreover, that many children with Down syndrome display behavior problems that stretch from childhood into young adulthood and can complicate the responsibilities of parents and siblings.


The picture that emerges from these studies is an important one. Families of children with Down syndrome are very much like families with typically-developing children, and while the ups and downs that they experience may be unique to their situation, the majority of reports from these families are very positive. Especially for future parents of children with Down syndrome, it is vital to characterize the experiences of these families accurately.•


AMY AND THE ORPHANS UPSTAGE GUIDE 17


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