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“Be open to the immense possibilities”: Reflections on Having a Sibling with Down Syndrome by Colleen Smythe

Wednesday, July 13, 2016 4:35 PM | Renee Canfield

As a Toledo native and a sibling of somebody with Down syndrome, I am always excited to connect with families in the DSAGT community. Lately, my focus has been on raising awareness of sibling dynamics. My 18-year-old sister, Sara, has Down syndrome, and I believe she has had a significant influence on who I am today. In my adult years, I have examined my relationship with Sara from a broader perspective by talking to other siblings like me. Although everyone’s story is different, most people I have spoken with agree that having a sibling with Down syndrome is a life-changing experience.

For my senior thesis at the University of Michigan, I interviewed 19 non-disabled adults who have siblings with Down syndrome and analyzed their responses. I also coordinated a siblings workshop this spring where non-disabled siblings, or “sibs,” could mingle, play games, and share thoughts about their brothers and sisters with Down syndrome. In each setting, I noticed patterns that I thought parents and other members of our community may be interested in hearing.

For many of the people I interviewed, having a sibling with Down syndrome was not all sunshine and roses. For example, they mentioned feeling embarrassed, because sometimes kids with Down syndrome do odd things in front of other people. A few siblings said they felt uncertain and wondered, “What’s he gonna do this time?” whenever they went out. Many also said their parents gave their siblings with Down syndrome extra attention, which sometimes made non-disabled siblings feel less valued.

Some interviewees felt that as sibs, they had to follow certain unspoken rules. For instance, many seemed to believe that it is wrong to feel frustrated with their sibling with Down syndrome, and if they do feel frustrated, they shouldn’t complain. One participant explained it this way: “You can’t really be mad, but you’re mad.”

Despite these difficulties, there were a lot of positive qualities to these sibling relationships, too. No two people with Down syndrome are the same, but people who know them do tend to describe them as really fun and loving. Interviewees told me stories about everything from funny Skype conversations to one brother’s Gordon Ramsey impressions. Many participants kept these warm relationships with their siblings into adulthood. Some people felt their siblings needed them, so they felt guilty when they had to move away or spend less time with their siblings. One interviewee said, “Other siblings don’t need you as much, but she definitely does.”

Overall, everyone in my sample said their siblings with Down syndrome had affected who they are. Several said their sibling made them a “better person.” Many people also felt that handling a sibling with Down syndrome made them more accepting of differences, and made them grow up faster. Some participants measured people’s character based on whether they got along with their siblings with Down syndrome. One woman even said her sister was a “monitoring stick for boyfriends” — potential suitors had to receive the sister’s approval to stay in the picture! Finally, having a sibling with Down syndrome drew many people to disability-related volunteer work, careers in special education, and helping professions such as nursing and counseling. (This pattern holds for me personally as well — because of Sara, I am starting law school at the University of Michigan this fall to pursue special education law.)

The sibling workshop in May was a wonderful opportunity to see the above attitudes in action. The kids at the workshop talked about many activities they enjoy with their siblings, including playing video games, wrestling, and singing and dancing. Just like the adults I interviewed, sibs expressed a variety of feelings towards their siblings, such as happy, frustrated, and proud. Common complaints included annoyance when the sibling with Down syndrome got into the other kids’ belongings, and embarrassment over socially inappropriate behaviors. Several attendees said that they worried about their sibling’s safety — that a baby brother might fall down the stairs, or that a teenage sister might venture out on her own and get lost.

One activity I found particularly interesting was when I read out pretend questions from siblings of children with Down syndrome. The workshop attendees had plenty of wisdom to share with these hypothetical peers, showing that even in childhood they have gained important insights about their siblings. As a group, we discussed the unique pressures sibs face. In this vein, the older participants pointed out that sibs do not have to be perfect to make up for their brothers’ and sisters’ limitations. They also asserted that kids without disabilities are just as important as their siblings with Down syndrome, even if they sometimes get less attention.

In fact, the advice offered during our workshop parallels the lessons that my adult interviewees said they learned. The most common advice they gave was to treat a sibling with Down syndrome “like you would treat any sibling” — love them, play with them, and so on. Next, they pointed out that non-disabled siblings shouldn’t forget about their own wellbeing. They said sibs should be open with their parents when they’re frustrated, and that it’s good to “talk to someone about it,” meaning connecting with sibling organizations, a counselor, or another trusted adult. Additionally, they said it’s normal to “wish or wonder what it would be like to have a normal sibling. […] Don’t feel like you have to hide that feeling.” Finally, participants said that having a sibling with Down syndrome teaches you “more than you ever imagined,” especially patience and putting your life in perspective.

My hope in sharing my thesis and helping sibs connect is to give families a context for their own experiences. There is no wrong way to feel about having a sibling with Down syndrome — it’s perfectly normal to feel happiness, confusion, worry, anger, love, and more, sometimes all at the same time. Many parents wonder how a new baby with Down syndrome will affect their other children. I won’t sugarcoat it — there will be challenges, and it is very important to keep open lines of communication and make sure that siblings without disabilities feel appreciated. But above all, I want to reassure parents that the other kids in the family are going to be just fine.

I will sign off with the words of one of the young women I interviewed: “It seems bad at first, intimidating and scary. But once you get to know them, and see their personality, it’s like, how could you live without them?”

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