Siblings Need Attention And Support

What is it like to be the sibling of a person with complex medical conditions?

Brothers and sisters express a range of emotions: compassion, love, pride, responsibility, guilt, anger and frustration among them.

Stacey MacLean

Social workers are paying more attention to family dynamics and addressing the whole family that supports a medically fragile child, according to Stacey MacLean, LSW, “because everyone is affected.”  She addressed this topic at the annual meeting of the Association for Providers of Children with Complex Medical Needs (APCCMN) in October.

“It’s challenging for parents to divide their attention between the healthy and the medically complex or severely disabled child,” said Stacey, Director of Social Work at New England Pediatric Care (NEPC) in North Billerica, MA. She presented several resources for families and providers, including:

“My Sib…” a YouTube video of children expressing their feelings about a disabled sibling: www.youtube.com/watchfeature=player_detailpage&v=PyOixKJJeXY

“Understanding Sibshops” a YouTube video highlighting workshops for siblings of children with special health and developmental needs:  www.youtube.com/watch?v=CN-9s2eRD-Y

“These kids are resilient and smart and often very mature,” said Stacey, “but they are only human. When Mom and Dad can’t come to their game or recital, or they can’t go on a vacation like other kids, they feel neglected, and then guilty for feeling that way.”

She recommended that families who care for a child at home utilize the short term stay program at any of Massachusetts’ three pediatric skilled nursing facilities in order to spend time with their other children.  She said the residential homes also have excellent programming to help families stay engaged with children who live away from home.

Ellen O’Gorman, Executive Director at NEPC, reassures families they are good – not bad -- parents when they drop off children for respite care.  “Too often people focus on the child in the wheelchair and ignore the child standing next to the child in the chair. Both are important.”

Stacey also suggests SIB workshops based at most major hospitals to help siblings feel less isolated and share concerns. Under the guidance of professionals they can deal with feelings of guilt for being the “healthy” one or the survivor of an accident.  They can role play how to deal with insensitive peers who bully them because their brother or sister is “different.”  They can discuss worries over who will care for their sibling when parents eventually pass on.

For more resources visit www.siblingsupport.org.

Learn more about NEPC at www.nepc.org.