"Maaa-aaaax," Sabrina says in a sing-song voice, "want me to have a magic show for you?" Sabrina's into doing tricks, and Max is a devoted one-man audience. She holds performances about once a week at bedtime, in Max's room. "Look, Max, I'm placing the little ball in the bag!" she says, pushing it deep into the folds of a purple silk pouch. "Look, Max, the ball is gone!" she says, one hand hiding a suspiciously bulging corner. Max grins. I have a feeling he's just humoring her.
Sabrina's magic show is amusing to Max—and thrilling to me. I love when she's super-nice to him. Like many siblings, Max and Sabrina fight a lot. Like many mothers, it drives me nuts. Now I know exactly how my own mom felt when my sister and I went at it. But unlike my mom, I have a nagging worry in the back of my mind: Will Sabrina be there for Max when Dave and I are gone? Will she be able to handle the responsibility? What resources will she have? Why oh why do we keep procrastinating having a third kid?
So it was interesting to read the results of the just-released Easter Seals Siblings Study, done in partnership with MassMutual. The organization did an in-depth surveys of 351 adults who have a sibling with a developmental or physical disability, and a parallel study with adults who did not have a sibling with disability. Some of the responses were heartening, some made me nervous. A few notable ones:
• Six in ten respondents are involved in the daily lives of their siblings with disability (less than three in ten other siblings say the same).
• About 80 percent say they have a close relationship with their sibling with a disability and that the relationship enhances their life (60 percent of the general public respondents felt the same).
• Nearly half say their parents house their sibling with a disability; 14 percent say their sibling lives with them, and 23 percent say they are already the primary caregiver—and that caring for their sibling is a full-time job.
Jennifer, the 2011 Easter Seals Adult Representative, with her older brother Tim
• Some 60 percent say having a sibling with special needs has a positive impact on their quality of life, teaching them patience, understanding, and compassion and giving them perspective.
Mary and her brother, Joseph
• Forty percent of respondents say their kids benefit from having an aunt or uncle with disability in their lives.
• Many siblings cited increased stress in caring for their sibling with disability; three-quarters of primary caregivers say sometimes their relationship with their sibling puts a strain on their family life.
Easter Seals plans to use the findings to better support families caring for someone with a disability, and raise more awareness of the challenges they face.
I know Sabrina is going to have serious responsibility resting on those sturdy shoulders of hers. Fretting about the future never does me any good, though (why my special needs mom blinders come in handy). This is a good reminder to sign her up for a SibShops program. I'll keep doing my best to nourish Max and Sabrina's relationship; help grow her understanding of what it means to have cerebral palsy and be the sis of a kid with special needs; separate them when they fight so they do not disfigure each other; and enjoy the magic when it happens.
Kyle, the Easter Seals 2011 Child Representative, with his sister, Julia