Raising the Other Child
For the last four years, Mason Gray has been the focal point of his family. Faced with a diagnosis of classic autism after Mason’s second birthday, his parents shifted into high gear to find resources, teachers and therapists. They learned the best ways to communicate with Mason and how to handle meltdowns. Like so many other special needs, autism can engulf a family—almost define it.
But Mason’s older brother is not defined by autism. Nine-year-old Thomas is a typically developing child who loves LEGOs and Harry Potter. In fact, he’s in the gifted program at school. So how do families like the Grays strike a balance, ensuring that Thomas feels just as honored and special as Mason, who requires more time and attention?
- Recognize the Need to Connect. Don Meyer is the head of Sibshops, a workshop he founded in 1982 to help brothers and sisters of special-needs kids share their experiences. “Sibshops try to provide young sibs with peer support and information within a highly recreational context,” says Meyer. Discouraged by programs that looked like group therapy sessions, Meyer created a clublike atmosphere that was intrinsically fun for kids. A Sibshop can be a place to eat junk food, play games and, most of all, talk with other kids who are in similar situations. Jennifer Gray, Thomas and Mason’s mom, praises the Sibshop Thomas attended. “It’s actually kind of fun for the parents,” she says, “because for the first time, it’s the neurotypical kids who are getting dropped off, and in the waiting room are all their special-needs sibs.”
- Provide Information. “Sibs’ experiences parallel parents’ experiences,” says Meyer. “They’re going to have many, if not most, of the same issues, as well as many that are uniquely theirs.” Parents cope by researching information from a variety of sources. But kids rely on parents alone to answer the same questions and concerns. “We have taken a very honest approach,” says Jennifer Gray, providing Thomas with as much information about autism as is appropriate for his age. She calls Thomas “old for his years,” an intelligent child who shows a real interest in his brother’s disability. For Thomas, information is power.
- Give Sibs a Voice. Gray tries to allow Thomas express his feelings, even when he gets upset when Mason’s needs cut short a family outing. But she also recognizes the love and protectiveness in her older son. Last year, his parents asked him what Santa should bring him for Christmas. His mother remembers, “He said, ‘Maybe we should ask him for the gift of freedom from autism’—which just kills you as a parent.” Siblings can also be a savvy addition to a child’s school team, says Meyer. If parents hope to send their son with autism to middle school, who better to judge the atmosphere than an older sibling who’s been there?
- Be as Fair as Possible. Kids with disabilities necessarily get a lot of attention, but their sibs need to feel special too. “I encourage parents to carve time out of their crazy, busy schedules to spend time one-on-one with their typically developing kids,” says Meyer. And it’s important to treat kids equally whenever possible. “You’re going to avoid a lot of resentment if there are not different sets of rules,” he says. A child may have Down syndrome, but that doesn’t mean she can’t take out the trash or set the table when it’s her turn. “Sibs often have a fairly accurate and fairly unsentimental view of what their [special-needs] sibs can and can’t do, and we would be wise to listen to them.”
- Plan Ahead. Long after parents are gone, says Meyer, “it’s likely going to be those brothers and sisters who can assure that [their special-needs sibling] leads a dignified life.” It isn’t fair to expect siblings to shoulder that responsibility alone without a plan in place for the care and advocacy of that someday-adult with a disability. “Some of the most caring, compassionate, thoughtful people I know are sibs of special-needs people,” says Meyer. “You see a lot of insight and tolerance and maturity and advocacy.” And parents can go a long way toward fostering those attributes.
RESOURCES FOR KIDS AND PARENTS
Find myriad resources, forums and reading lists at Donald Meyer’s Sibling Support Project: www.SiblingSupport.org
Down Syndrome Guild of Greater Kansas City
913.384.4848
The guild hosts Siblings’ Night Out, fun events held every three months for siblings of children with Down syndrome. Contact executive director Amy Allison at Amy@KCDSG.org for details.
United Cerebral Palsy of Greater Kansas City
www.UCPKC.org/FamilySupport.html
816.983.2207
UCPKC’s program provides a double bonus: Three hours’ respite care for kids with CP and, concurrently, Sibshops for sibs up to age 12. Held monthly at the Leawood Baptist Church, 8200 State Line Rd. Call for details.
Shawnee resident Claire M. Caterer writes frequently on the topic of special-needs children and their families.