Support for Siblings of Children with Down Syndrome
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 develop 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 though 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.”
“Having a child with Down syndrome has made my girls into beautiful people,” says Safarik. “They’re patient and compassionate and good advocates for people with disabilities. Remember when almost all kids with Down syndrome were institutionalized? What a loss that was to all of us. We sure are glad those days are gone.”
Blogs, websites, workshops, and conferences are accessible resources for children who have siblings with Down syndrome. Contact the National Down Syndrome Society (www.ndss.org) or the National Down Syndrome Society Congress (www.ndsccenter.org) to get families connected.
(Originally appeared in www.nurse.com, March 26, 2007)