Sophia and Henry Hess, of Columbus, are like any other sister and brother. They laugh, tease and have the occasional squabble. It's a
normal relationship, except for one thing: Henry, 10, has autism and Sophia, 13, does not.
While raising a special-needs child is a challenge for the entire family, it can have a profound effect on siblings in particular. Because of Henry's diagnosis, Sophia has had to tackle some tough decisions from a young age, explained her mother, Amy. And her father, Tom, agreed.
"She's had to be an extra parent in a lot of ways," Mr. Hess said.
With much of parent's attention going towards the disabled child, it's easy to see why typical siblings of special-needs children sometimes grapple with a difficult feelings, said Dr. Tom Fish, Director of Employment and Family Services at The Nisonger Center at Ohio State University, where sibling-support groups have been offered for over 30 years.
"It's natural to be embarrassed, to feel resentful of increased responsibilities or that the special-needs child gets more attention," Fish said.
At the other end of the spectrum, Fish said, siblings may act "too" good, attempting to shield parents or the disabled sibling from extra stress. Or they'll become overly helpful in an effort to receive attention. They may also struggle with guilt over being the "healthy" child or worried about how others will treat or view their sibling.
Sophia knows some of these feelings well but has taken them in stride.
"The most difficult part is to see people being mean to Henry because they don't know who he is," Sophia said. "Autism is just what he (has), not who he is."
Siblings of children who develop chronic or life-threatening illnesses can also struggle with a range of emotions.
"Illnesses create a lot of unknowns," said Karen McHugh-Fornadel, Child Life Specialist at Nationwide Children's Hospital. "It could be as simple as a child coming home from school and not knowing who is going to be there or if something will happen to their sibling."
Siblings may also engage in magical thinking - relating events that don't correlate with their sibling's illness, such as blaming themselves for the sickness because they got upset at their sibling the day before, explained McHugh-Fornadel.
Keeping the Balance
Dr. Fish offered three suggestions for what parents can do to help their non-disabled children combat fears and feel valued:
- First, give siblings correct and age-appropriate information about the disability and discuss it often. Children may not know how to ask the right questions or may have preconceived notions about the condition that are incorrect.
- Second, allow children opportunities to express how they feel through a variety of ways including talking, artwork or role-playing. The Hesses have found this to be particularly helpful. "We've always been very honest, very open with one another," Mrs. Hess explained.
- Third, give children opportunities to be meaningfully involved in their disabled sibling's life. Every couple of weeks the Hesses have a team meeting with Henry's therapists and aides. Sophia is always invited. "We've always asked for her input because she lends a different perspective as a sibling and we value her feedback," said Mr. Hess. She also takes a dance class with her brother.
Growing up in a special-needs environment can provide many benefits as well:
- Special-needs siblings tend to be emotionally and socially mature, said Dr. Fish.
- They also tend to be very tolerant, compassionate, dependable and empathetic, qualities Sophia's parents certainly see in her. "She's learned how to do things for herself and then turn around and become a teacher for others," said Mrs. Hess. "She's just such an amazing kid."
- These strengths often make siblings one of a special-needs child's greatest advocates. "It's significant that you know your sibling for a longer time than anyone else. They can be a great support both as children and as adults and possibly future caretakers," said Dr. Fish.
When asked to say something about himself, Henry replied, "I'm a great kid."
Sophia, with a big smile, agreed.
Support groups provide a non-judgmental environment for kids to ask questions, express their feelings about growing up in a special needs environment, get correct information about their sibling's condition and connect with other kids who are having similar experiences. Here are some great local resources:
- The Nisonger Center at Ohio State University: for ages 7+ , 614-292-7550
- Easter Seals Supporting Our Siblings (SOS): for ages 8-13, 614-228-5523
- Nationwide Children's Hospital Children's Clubhouse: for siblings, ages 3-11, of inpatient and outpatient children at NCH, 614-722-3635