In the United States, an estimated 6.99% of children ages 3-17 have developmental disabilities (Zablotsky, Black, & Blumberg, 2017). Most of these children have brothers and sisters. Throughout their lives, these siblings will share many – if not most – of the same concerns as parents of children with special needs, as well as issues that are uniquely theirs.
Over the course of the lifespan, siblings spend a significant amount of time with each other, particularly in early childhood. The sibling relationship is usually the longest-lasting relationship in a family, and brothers and sisters will likely be involved in the life of the child who has special needs longer than anyone—including the child’s parents.
The concerns of young siblings of children with intellectual and developmental disabilities (IDD) have been documented in the research and clinical literature, and shared by authors, parents, and siblings themselves in books, films, and social media. While not all siblings experience the same concerns, the following themes emerge repeatedly among siblings, and are therefore noteworthy.
One of the biggest ways that siblings’ experiences parallel that of parents is the need for information about the diagnosis/disability of their brother or sister. Parents have access to information from professionals. If they are lucky, siblings receive information from parents.
Siblings’ information needs change throughout childhood. Preschool-age siblings understand disability in terms of routines and behaviors. A four-year-old sibling’s definition of cerebral palsy might be “cerebral palsy means that the lady comes to your house, you roll on the ball and you learn how to walk.” Observation-based definitions are good foundations that can be built upon as the child’s understanding of the world becomes more sophisticated.
Preschool-age siblings need to know that they didn’t cause, and can’t catch, their siblings’ disabilities. We unfortunately know too many young sibs who believe something they said or did—a tantrum, a fight, teasing taken too far—caused their brother’s or sister’s disability. Others reason that if they can catch their sister’s strep throat, they can catch her Spina Bifida. These young children need accurate, age-appropriate information about their siblings’ disabilities.
School-age children need information in accessible language to explain the disability to themselves and to peers, who don’t always ask questions in the kindest ways. It can be liberating for a school-age sibling to have a word such as “autism” to silence classmates’ questions. If there isn’t a name for the disability, it can be helpful to have short phrases to describe it. “My brother learns/walks/talks/etc. differently because his brain works differently.” Helping kids develop this language through ongoing check-ins and casual conversations is an effective way to support them.
Young adolescent and teen siblings need information about future plans for the person with the disability. As they become more independent and begin to think about their own futures, many teen sibs worry about the future care of their brothers and sisters with disabilities, and the roles they will play. Who will take care of my sib? Where will they live? Will I be legally/financially responsible? Teen siblings need reassurance that plans are being made for the future, and they benefit from having opportunities to participate in planning conversations.
Many young siblings experience feelings of isolation when they are excluded from information available to other family members; ignored by service providers; have limited time (and perhaps courage) to openly communicate their thoughts, questions, feelings and concerns with parents; or lack strong connections to peers with whom they can share their feelings about their siblings. In her 2010 TEDxSanAntonio talk, “Recognizing Glass Children,” Alicia Arenas, who grew up with a younger brother with autism, said: “We are called glass children because our parents are so consumed by the needs of our brothers and sisters that when they look at us, they look right through us, as though we’re made of glass. We know that the problems that we have, the things that we face, are insignificant compared to what our parents are dealing with and our siblings are dealing with. So, we’re very quiet,” (Arenas, 2010).
Many siblings experience feelings of resentment when the child with IDD becomes the focus of the family’s attention and resources (social, financial, time), or is indulged, overprotected, or permitted to engage in behaviors unacceptable by other family members. Siblings who say they fared well in the resentment department often share that their parents had equal expectations of behavior and chores for all the children in the household, and that family life revolved around something—music, sports, belonging to a religious community—other than just the child with the disability.
Siblings experience guilt for several reasons. Many feel guilty because they believe they may have caused the disability, or because they were spared having the condition. Siblings may feel guilty for engaging in typical, expected, even healthy conflicts with their brothers and sisters with disabilities—or for feeling resentful or jealous of them. Surpassing their siblings in developmental and/or social milestones is another cause for guilt.
“It’s hard when you can do something like go to the mall by yourself with friends or get your driver’s license and because your sib has a disability, he/she can’t,” shared one young sibling from New Hampshire (Meyer, 2005, p.100).
The “good kid,” the “overachiever,” the “perfectionist.” Siblings often wear these self-imposed labels because of a perceived pressure to achieve in academics, sports, or behavior. Many siblings who put pressure on themselves as high achievers wish to compensate for the limitations of the sibling with a disability, and to reduce caregiving burden on parents. It is important to consider the motivation for such achievement, and the toll it may take on the child’s well-being. It is helpful for young siblings to understand that it is okay—and expected—to not get it right 100% of the time, and to know that they are unconditionally loved.
Young siblings experience just as many opportunities as concerns. A short list of such opportunities includes:
Brothers’ and sisters’ unique joys, concerns, and contributions make them too important to ignore. Still, siblings remain often overlooked—even by agencies that value family-centered practices. When siblings’ concerns are addressed, everyone in the family benefits. Below are suggestions for parents and service providers to minimize siblings’ concerns and maximize their opportunities:
Young siblings of children with IDD can experience an array of opportunities and challenges. Parents, other caregivers, and professionals can effectively support young siblings by providing them with information, inviting them often to share their ideas, questions, and concerns, and enabling them to connect with their peers who share the experience of having a brother or sister with IDD. Supporting the well-being of siblings is an investment that yields significant positive results for the entire family.
Visit the Sibling Support Project for more information on young siblings and how to support them.
Arenas, A. (2010, December). Recognizing glass children. Presented at the TEDxSanAntonio 2010 TEDx conference. Retrieved from http://bit.ly/2MaJX18
Meyer, D. J. (Ed.). (2005). The sibling slam book. Bethesda, MD: Woodbine House.
Zablotsky, B., Black, L., & Blumberg, S. (2017). Estimated prevalence of children with diagnosed developmental disabilities in the United States, 2014–2016. NCHS Data Brief, 291, [Hyattsville, MD: National Center for Health Statistics. 2017.]. Retrieved from https://www.cdc.gov/nchs/products/databriefs/db291.htm