According to a 2011 report of the US Census Bureau, 2.8 million children have a disability, defined as an impairment in visual, auditory, cognitive, and ambulatory domains, as well as self-care or independent living.1,2 A significant proportion of these children have at least 1 sibling. But despite these overwhelming numbers, the needs of siblings are frequently neglected.
“Parents are offered services to assist with their special needs child, be it physical or mental health or developmental needs. These services are not routinely offered to siblings. But all the clinical research suggests that siblings have the same issues as parents, plus issues that are uniquely theirs,” said Don Meyer, director of the Sibling Support Project and founder of the SEFAM (Supporting Extended Family Members) program at the University of Washington, Seattle.
“Siblings are too important to ignore because no one logs more hours and minutes with special needs children than their brothers and sisters, with the exception of the parents, usually the mother,” he emphasized.
Moreover, siblings will be in the lives of the disabled family member longer than anyone, including service providers and parents, a relationship often in excess of 65 or 70 years, he told Psychiatry Advisor.
In the Dark
Siblings are often “kept in the dark about what is going on with their disabled brother or sister,” said Avidan Milevsky, PhD, associate professor of psychology, Ariel University, Israel.
“Our research shows that parents do not want to burden their well child with the struggles that affect the disabled sibling,” he told Psychiatry Advisor. “Additionally, cultural, parenting, or family patterns of secrecy prevent siblings from being included.” Although the siblings know that there is something wrong, they are “left in the waiting room, wondering what is going on with their brother or sister.”
“Because children have wild imaginations, in the absence of accurate information, they imagine that the situation is worse than it actually is,” said Dr Milevsky, who is also associate professor, Department of Psychology, Kutztown University of Pennsylvania. So “it is important for parents to clue children in and keep them updated,” he advised.
Children at Risk
Siblings of disabled children experience an array of stressors and feelings that can increase their risk for significant emotional and behavioral problems and functional impairments.3,4 For example, they may feel anger or jealousy5 and may resent if the brother or sister is held to a different set of standards and receives what appears to be preferential treatment.6 Siblings are often asked to help out with the disabled child or take on extra household chores, potentially increasing resentment.7 And because children with chronic conditions often require costly services, parents may not have enough money to meet the needs or wants of the well child.7 Moreover, parents often spend the lion’s share of their time with the disabled child, at the expense of the sibling.3
“Siblings may feel neglected because much of the parents’ emotional energy is directed toward the child with the disability, leaving little emotional energy for the other children in the family,” Dr Milevsky said.
Meyer encourages parents to spend 1-on-1 time with their well children, which communicates to the sibling that “their parents truly care about them as individuals.” This extra personal time also creates a framework for communication.
Parents should also be encouraged to attend milestone events in the sibling’s life, such as graduations or weddings, and not allow the needs of the child with the disability to overshadow the special occasions of the well sibling, he added.
Siblings of children with disabilities may experience a “wide range of emotions.”5 Some feel guilty because they wonder if they caused the disability. They may feel guilt about being resentful or frightened about the sibling’s health. Some may experience a “love/hate relationship” with the disabled brother or sister.6 Some are embarrassed about the behaviors and appearances of their disabled sibling, to the extent that they may claim to be an only child or avoid inviting friends over.5
Guilt can motivate siblings to hide their own feelings so as not to further burden their parents. Or they may feel the need to “be perfect” to compensate for their sibling’s perceived imperfections or the stress the sibling’s disability is putting on the parents. “They suffer silently,” Dr Milevsky said.
Parents should be encouraged to create a safe forum for children to express their feelings, reassuring them that they are allowed to be themselves and do not have to conform to an image of perfection, experts agree.
The impact of a disabled child on the sibling changes over time. “Young children will have one set of concerns, midlife siblings will have other concerns, and senior citizens will have still other concerns,” Meyer noted.
His organization offers trainings for professionals interested in running community-based workshops for young children. “These ‘Sibshops,’ as we call them, provide siblings with recreation, enjoyable activities, and information, as well as support and validation from other children who understand,” he said.
As children get older, they may worry about the future; for example, will there be enough money for college, or will they need to live at home to help out?7 And as they start families and careers, they may worry about how to integrate the needs of their disabled sibling into their lives.
Meyers points to another developmental stage that is difficult for sibling caregivers. “One of the most challenged groups is the ‘sandwich generation’ — I call them ‘club sandwiches’ — because they are often caring for their own children, their aging parents, and their special needs sibling,” he said.
Mr Meyers created Sib Teen, Sib20, and SibNet, which are online groups for young and adult siblings of people with disabilities, garnering daily participation from >3000 siblings worldwide. “This is the first time that many people have found a forum for expression, a sense of community, being validated, and feeling supported,” he said.