Sibling Perspective: Diagnosis’ Impact on Families

When new parents find out their child has been diagnosed with Down syndrome (DS), one of the immediate concerns is how this will affect their other children, as well as their family dynamic. In almost every family I have met that has a child with DS, the parents report the other siblings care for and love their sibling with Down syndrome just as much as if this were a typical sibling. Parents also feel that having a child with Down syndrome has enriched their own lives as well as the lives of those around them. Not only do I know this from personal experience, but there are several scientific studies that support this observation as well.

Surveys conducted among siblings of individuals with DS found that 96 percent of siblings reported they had affection toward their sibling with DS, and 94 percent of siblings expressed that they were proud of their sibling with DS. Among older children, 88 percent felt they were better people because of their sibling with DS.

Siblings also reported that having a sibling with DS enhanced their perspective on life and made them more patient and understanding of differences, and taught them how to love. Parents of individuals with Down syndrome were given similar surveys, and the results were overwhelmingly positive. Seventy-nine percent felt their outlook on life was more positive because of their child with DS, and many felt that having a child with DS has contributed to their personal growth. They also reported becoming more patient, accepting and loving as a result of having a child with DS.

Many of these feelings were shared by my parents as well as my younger brothers. I am the oldest of my siblings, followed by my 20-year-old brother with Down syndrome, then my 16- and 12-year-old typical brothers. My parents believe that having a child with DS has strengthened our family. My mom and dad both feel that my brother has filled our home with laughter and that his sense of humor brings us together.

Having a child with Down syndrome has made my parents more compassionate and open to people who are different from them. My younger brothers also feel they have been made better people as a result of having a brother with DS. My 16-year-old brother believes he has become more compassionate, patient and responsible, while my 12-year-old brother says it has made him kinder to everyone he meets.

Personally, I am certain I would not be the person that I am today had it not been for the things I have learned by having a brother with Down syndrome. I don’t mean to downplay the added stressors that go along with having a child with any disability — such as medical issues, concerns about safety and challenges with navigating the educational system — but I think these difficulties are ultimately outweighed by the positive outcomes we see in many of these families.

Although having a child or sibling with DS can be emotionally trying at times, the overwhelming majority of family members feel their lives have been enriched and they have become better people in many ways as a result of having a family member with Down syndrome.

References

Skotko BG, Levine SP, Goldstein R. Having a brother or sister with Down syndrome: Perspectives from siblings. Am J Med Genet Part A. 2011;155A(10):2348–2359.

Skotko BG, Levine SP, Goldstein R. Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. 2011. Am J Med Genet Part A. 2011;155A(10): 2335–2347.

— Cassie Strawser, research coordinator, Trisomy 21 Program