Nurses may assume that siblings of children with Down syndrome feel burdened by responsibility. The opposite often proves true, however. Studies reveal that brothers and sisters of children with Down syndrome are affected much more positively than negatively.
"Though it's not what people might expect, that experience is pretty typical," says Dr. Brian Skotko, a physician at Children's Hospital Boston, whose research shows that siblings of children with Down syndrome tend to develop kindness, empathy, and respect for diversity. Skotko speaks from experience: he has a sibling with Down syndrome.
Skotko and his colleague, social worker Susan Levine, drew on 33 years of combined experience running support groups for brothers and sisters of children with Down syndrome to create eight recommendations to help parents nurture healthy relationships among their children. "We made some consistent recommendations common to all families -- things based on the problems shared by most brothers and sisters," says Skotko.
"Brothers and sisters have so many questions -- including some they're afraid to ask," says Deb Safarik, RN, BSN, who runs a support group for families of children with Down syndrome in Lincoln, Neb. Safarik has a 14-year-old son with Down syndrome and three grown daughters. "Children wonder about simple things like 'Can I catch Down syndrome, and will my child have it?'"
"There are also the negative feelings and conflicts that all siblings of all children come across," Skotko continues. "These feelings can be tougher for siblings of children with Down syndrome to share."
Safrik concurs, saying, "When siblings do develope negative feelings like frustration and jealousy, it's important that families don't dismiss this or brush it off. A simple 'Tell me why you feel that way? What is going through your mind?' does wonders to help kids feel understood, and it gets honest communication flowing."
Sherry Drbal, mother to Dexter, a 10-year-old boy who has Down syndrome, and 6-year-old Dani, agrees. "My goal is to have a close enough relationship with Dani so that she comes to us with what she may be struggling with," she says. "And attitude is huge -- there's so much that Dexter can do -- like reading, music, Boy Scouts, and family activities. So it's really important that he and his sister share responsibilities around the house as much as he's able. This shows fairness, too, which helps them get along well."
"We intentionally published these recommendations in a medical journal," says Skotko. "We wanted to get this information out to nurses, doctors, and others so they would feel included and share this information with families and make a real difference by supporting healthy relationships between siblings."
Strategies to Promote Healthy Family Relationships
Be open and honest - explain issues related to Down syndrome as early as possible. Brothers and sisters often prefer to avoid a single "big" conversation and instead have a continuing dialogue as new questions and concerns emerge. If children shy away from bringing up the topic, parents can help by periodically asking them if they have any questions.
Allow siblings to express negative feelings. Like siblings of any child, brothers and sisters of children with Down syndrome will experience frustrations and negative emotions; parents should know these feelings are generally temporary and allow children the space for expression.
Recognize that siblings may experience difficult moments. Parents can help prepare siblings to handle embarrassing or upsetting situations, such as scenarios during which people stare at or make fun of their sibling. They should honor a child’s need to establish distance from a sibling with a disability when out in public. This especially comes into play during the preteen years when the need to "fit in" peaks.
Limit caregiving responsibilities. While assigned duties make siblings feel helpful and capable, most siblings want those responsibilities to be limited. Siblings often say they don't always want to be available for babysitting, for example. Nurses should remind parents that siblings are children first, not substitute parents. Limit responsibilities to help avoid feelings of pressure, resentment, and guilt.
Recognize that each child in the family is unique. Brothers and sisters of children with Down syndrome are quick to point out that they also need attention and that they want their accomplishments to be acknowledged. Encourage children to reach their full potential without feeling the need to "compensate"' for a sibling with Down syndrome.
Be fair. Children often say parents allow children with Down syndrome to "get away with more." They want to see their parents consistently set and enforce limits for acceptable behavior. Parents also should allow brothers and sisters to have their own friends and interests and to do so without guilt.
Take advantage of support for siblings. Brothers and sisters of children with Down syndrome often are relieved to talk to peers with whom they can share their experiences, and to voice both positive and negative feelings. There are many books for children and teens about sibling and disability issues; the National Down Syndrome Congress has a list available at www.ndsccenter. org/resources/ bibliography06. pdf.
Recognize that parents need support, too. During workshops, many siblings comment that their parents should talk with other parents of children with Down syndrome and learn to "relax more and worry less." When parents cope effectively, their children benefit, too.
