For kids with special needs, a day filled with doctor’s appointments, therapy sessions and the watchful eye of parents is just life as usual. But for their siblings, growing up in a family that seems to be centered around the needs of just one child can be difficult.
Years before Christina Rogers became a social worker at Riley Hospital for Children, she was a regular visitor at the hospital with her younger brother, Kevin, who had cerebral palsy. “I was the kid at Riley dragging my Barbie box around, going to all his appointments,” Rogers recalls. For her, however, the experience also gave her a sense of empathy. “Being two years older, I felt like a nurturer and protector. It made it second nature to understand disabilities.”
That early empathy led Rogers into a career in social work and back to Riley, where she ran a support program for siblings, called Sibshops, for four years. She’s now a care coordinator at the Center for Youth and Adults with Conditions of Childhood at Riley Hospital and Eskenazi Health. “A lot of focus in the home is on the child with special needs, and siblings sometimes have to learn to take a back seat,” she says. “That is hard to understand as a child at times, but it makes for such a rich adult life.”
Rogers offers several tips to parents striving to make sure their children without disabilities feel just as important as a sibling who does:
Creating special time
Rogers suggests parents make an extra effort to find activities that siblings can call their own. Writing these activities or events on a calendar shows kids that their time is special, too.
Laura Druetzler is already working to find that balance with her 3 year-old, Brooke, and 1 ½ year-old, Luke, who has Down syndrome. When Luke has therapy at home three times a week and Brooke doesn’t want to take part, she gets the treat of playing with an iPad. “As they get older, I want to find more special things to do for just me and Brooke and have her involved in her own fun classes,” says Druetzler. “I just want to make sure she feels like it’s not all about Luke, because a lot of times it probably seems like it is.”
Talking with those who can relate
Rogers is also a big advocate for connecting kids who have siblings with special needs with other kids who are in the same situation. “I know when I was growing up, I was the only person I knew with a family like mine,” she says. “Talking about daily challenges keeps kids from feeling isolated, and they may also realize, ‘Wow, I don’t have it that bad.’”
Finding a community that all your children can enjoy helps greatly too. Audra Lembke, mom to Nathan, 4, and Makenna, 1, who has Down syndrome, have found such a place at GiGi’s Playhouse, a nonprofit Down Syndrome Achievement Center that opened an Indianapolis location earlier this year. “Why I love GiGi’s for Nathan is because he can feel safe there and know that our family is different than most families, but not all,” Lembke says. “There are other kids just like him who have a sibling with Down syndrome.”
Druetzler has felt the same support at Gigi’s: “I feel like coming to GiGi’s is just as much for Brooke. It’s not like we’re going to play with just Luke’s friends. We’re going to play with all of our friends.”
Let them be siblings
Rogers also stresses the importance of allowing children to develop their own special relationship with one another. “Let them be kids. Let them argue. Just let them be siblings,” she says.
Rogers’ brother passed away five years ago, but the profound effect he had on her life still resonates. “I felt like my brother really guided my life,” she says. “I wouldn’t be who I am today without him.”
The Sibshops program is no longer active in central Indiana, but parents can find materials on the organization’s website at www.siblingsupport.org. Therapists and local advocacy organizations can also recommend sibling support resources.
