According to statistics from the Council for Exceptional Children, there are almost 6 million children with disabilities living in the U.S. Most have brothers and sisters. Family life is often organized around the moods, needs, and abilities of the disabled child. Even in the most capable families, the typically developing child can end up feeling (maybe being) short-changed. For older siblings, childhood is often virtually lost with the birth of the disabled child. For younger siblings, it is sometimes difficult to get much of a childhood at all.

Sometimes (especially in larger families) the help of the non-disabled child is very much needed in the day to day care of their sib. Sometimes they are asked, or just expected, to “understand” that their sib’s needs always come first; especially when there are also medical complications. Sometimes they feel that they need to be perfect to give their parents a “normal” counterpoint to their abnormal sib. Even when parents don’t expect it, these kids often put pressure on themselves to be good, to achieve, to somehow make up for the family’s sense of loss. Sometimes they feel torn between their desire to be part of the peer group and their loyalty to their family member, especially when the other kids are being cruel. And sometimes the non-disabled sibs carry enormous guilt just for being normal. They ask huge philosophical questions about the fairness of the shake of the dice (whether genetic or a traumatic event) that caused their sib to be handicapped while they got off scot-free.

As can be expected, these siblings experience the full range of emotions toward their disabled sibs: love, jealousy and resentment of the time taken up by their care, confusion about how to respond, joy for a sib’s accomplishments, and frustration that they can’t be – well, normal. The challenge for their parents is finding ways to validate their non-disabled children’s very legitimate feelings while trying to maintain an emotional balance of their own. It’s not uncommon for overwhelmed parents to sometimes be just too emotionally spent themselves to listen to a sibling’s worries or to even notice.

The situation is not all negative: There is a kind of strength and compassion that comes from managing all of this from a young age. The relationship between sibs is often tender. Siblings share in the joy of their disabled sib’s small achievements and milestones as well as their disappointments and frustrations. There are even times when they react to each other with the same teasing, joking, petty bickering, and jockeying for attention that are part of any sibling relationship.

A couple of teenaged girls I know believe that having disabled sibs has given them a perspective on life that isn’t shared by most of their peers. One has a brother with mental retardation. The other has a brother with a significant mental illness. Each is proud of her brother’s efforts and achievements and protective when others are thoughtless or mean.

 These girls find the teen angst of their other friends just irritating. They know what real crisis, real stress, and real heroism are. As a result, they don’t engage in the drama often indulged in by peers. It takes a lot to upset them. Problems are only problems, not crises.

Having been taken along to dozens of appointments and meetings where they had to be patient and entertain themselves while their parents dealt with their sibs, they know how to be patient and how to entertain themselves. Having borne witness to their siblings’ efforts and their parents’ struggles, they have developed an unusual capacity for empathy. Having helped their parents solve many practical problems involved in their brother’s care, each is unusually resourceful.  Having had to deal with the various and complicated reactions of people to their brothers, they are more sophisticated about human relationships than most people their age.

Would they rather that their siblings were normal? Sure. But they’ve found ways to manage and they’ve even found ways to make their experience into a plus. Having found each other through a high school support group for sibs of disabled children, they value their friendship above all others. It’s important to them that there is another kid in their world who really knows what it is like.

Like most things in life, having a disabled sib is complicated. The good news for parents is that there can be positive, life-affirming aspects to the relationship that sibs value and appreciate, especially as they get older. It is up to us as parents to make sure that we recognize and highlight those positive elements both for our kids and for ourselves.