Anna never knows what it will be like when she gets home. Will Eddy be in one of his moods or will he be friendly? Will they play and laugh or will there be yelling and tears? Will she be the target of his rage or will she be safe? She never knows what might set him off. As she enters the house, she is on high alert, trying to sense the atmosphere. Anna isn’t the wife of an abusive husband — Anna is the older sister of Eddy, a boy with mental retardation and autism. Anna is only 10.
Anna and Eddy’s parents are constantly stressed in their efforts to meet the needs of both children. Their son is usually in a world of his own. Every day, many, many times a day, they work with him to keep him calm, to keep him occupied, to keep him learning. They work hard to manage him when he is in the grip of his rituals and rages. They refuse to give up on him when he withdraws to his private inner place. They go to countless meetings to advocate for education and services to meet his special needs.
Meanwhile, they are painfully aware that sometimes Anna is the target of her brother’s moods. They aren’t at all happy that Anna’s needs get put off, even sometimes forgotten, in their efforts just to get through the day. They are doing the best they can. Indeed, they are doing better than many with the situation they find themselves in. Somehow they’ve been able to get Anna to dance lessons, to help her with at least some of her homework and to miss only a few of her soccer games.
Anna and her family are not alone. In the United States, there are almost six million children with disabilities. Most have brothers and sisters. Family life often is organized around the moods, needs, and abilities of the disabled child. Even in the most capable families, the normally developing child can end up shortchanged. For older siblings, childhood often is virtually lost with the disabled child’s birth. For younger siblings, sometimes it is 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 sibling’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 brother or sister.
Even when parents don’t expect it, these kids put pressure on themselves to be good, to achieve, somehow to 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 sibling 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 of the time taken up by their care, confusion about how to respond, resentment, joy for a sibling’s accomplishments and frustration that they can’t be normal. A further 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 sometimes to be too emotionally spent themselves to listen to a child’s worries or to even notice.
It’s not all bad. There is a kind of strength and compassion that comes from managing all of this. The relationship between siblings often is tender. They share in the joy of their disabled sibling’s small achievements and milestones as well as the disappointments and frustrations. There are even times when they react to each other with the same teasing, 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. Both have brothers with mental retardation. Each is proud of her brother’s efforts and achievements and protective when she needs to be. 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. Problems are only problems, not crises. Having been taken along to dozens of appointments and meetings, they know how to be patient and how to entertain themselves. 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 siblings 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.