Siblings in a special needs family
Monday, April 23, 2012
A pensive look in my daughter's eyes jolts my heart.
"Mom, I've been thinking..." Elaina says one night after her three sisters were tucked in bed. "You know I love Polly and Evangeline, right? I love them so much. But, Mom, I've been doing some thinking, and, well, I don't want them to live with me when we grow up. Is that OK?"
Her biggest worries in life should be who to invite over for the next playdate and what to take to school tomorrow in her lunch, not something as weighty as being responsible for her sisters. But Elaina is the oldest, she's smart, she has a type A personality and she has two sisters with Down syndrome.
Without us ever discussing it, her intuition has hinted to her that she may end up becoming their primary caregiver some day.
Siblings of special needs
Of the 53.9 million school-age children in the United States, 2.8 million have a disability, the U.S. Census Bureau reported last year. In Chicago Public Schools, about 57,000 students have special needs. Most of these kids have at least one sibling, children like my daughter Elaina whose life at home is a bit different than her classmates.
She is expected to help her sisters with Down syndrome with the daily activities. She tags along to therapy and doctor appointments. She pushes her sisters by example to reach developmental milestones.
Along with book bags and backpacks, siblings of kids with special needs carry around the weighty pressure of being a role model, a helper and an advocate, all while still being kids themselves.
I had no idea of the extent of Elaina's worries regarding her sisters, but it made sense. I have concerns and worries about her sisters. Why wouldn't she be working through the same issues?
I started to wonder how other parents navigate these topics.
Kim Hanna, mom to three girls and president of Gigi's Playhouse Chicago, a Down syndrome awareness center, understands the concerns.
"I often find myself conscious of balancing the needs of our children. There's no way to give each kid the same amount of time," she says. "There are simply not enough hours in the day. The reality is that Jade (3 years old with Down syndrome) requires more of our time, so the balancing act is identifying what the other two girls need and ensuring they don't feel left in the cold."
Through Gigi's Playhouse, Hanna is working to provide quality programming that supports not only individuals with special needs, but also the whole family.
Gigi's Chicago currently collaborates with The Belle Center of Chicago, a nonprofit organization dedicated to supporting the interests of children with disabilities and their families by reaching out to siblings through their Spectacular Sibs Workshop, hosted once a month at the playhouse.
Rebecca Kritzman, a speech and language pathologist who runs Spectacular Sibs, says the workshop allows siblings a safe place to talk openly and ask questions about life with a sibling with special needs. They learn from each other, and most importantly, realize they are not alone.
"Typically developing children want to be treated as individuals with their own unique wants and needs, just like their siblings," says Kritzman.
Sheila Swann-Guerrero, coordinator for Advocate Medical Group Pediatric Developmental Center's Sibshop, one of the founding sibling support groups in Chicago, agrees.
"Carving out time specifically for typically developing children is crucial. Provide opportunities to connect with other siblings who have a brother or sister with a disability. Peer support is powerful tool," she says.
Acceptance and concerns
Orla Levens, 12, a sixth-grader at a Chicago Public School on the north side, has a brother with special needs. Lucas has a chromosome disorder so rare that it doesn't have a name. It's simply known as number 17p13.3.
"I'm just afraid that kids won't accept my brother for who he is. I'm afraid that they won't understand. Whenever, wherever he'll be, people need to understand him," she says.
Tara Conley, with S.I.B.S. (Supporting Illinois Brothers and Sisters), says kids like Orla have concerns that typically mirror their parents', and they'll be in their sibling's life longer than their parents.
Kids with siblings who have special needs were quick to point out the positives about their brothers and sisters.
Orla likes her brother's sense of humor. "I guess a joy of having my brother is he always makes me laugh."
When Kim Hanna's daughter Zoe, 6, was asked what she thought about her 3-year-old sister having Down syndrome, her response was simple. "Jade doesn't know how to be a kid with Down syndrome. She just knows how to be awesome."
Julian Bane, 11, who has an older sister with Down syndrome, says she's learned a lot from her sister. "I love how Quincy works so hard to get good grades and how she is so concerned about friends, well, really any people, who are sick or injured."
I get it.
My kids have learned important lessons early, things like compassion and acceptance and an appreciation that every person on this planet is special simply because they are here, lessons I didn't learn until I gave birth to a child with Down syndrome in my 30s.
Parenting both typically and atypically developing children is a challenge, but then what parenting relationship isn't a challenge?
My daughter Elaina's worry over the future was a huge wake-up call for me. Not only is it my duty to ensure my children with special needs are growing and reaching their potential, I must also keep my typically-developing children in mind.
The bottom line is this: it's my job to make sure all four of my children are given a chance to live their lives fully.