Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

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.

Information Needs

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.

Isolation

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).

Resentment

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.

Guilt

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).

Pressure to Achieve

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.

Opportunities

Young siblings experience just as many opportunities as concerns. A short list of such opportunities includes:

• Insight on the human condition as a result of growing up with a brother or sister with special needs.
• Maturity developed as a result of successfully coping with a sibling’s special needs.
• Pride in their sibling’s abilities.
• Loyalty toward their siblings and families.
• Appreciation for their own good health and families.

Support for Young Siblings

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:

• Provide brothers and sisters with age-appropriate information. Parents and service providers have an obligation to proactively provide siblings with helpful information. Agencies representing specific disabilities and illnesses should be challenged to prepare materials specifically for young readers.
• Provide siblings with opportunities to meet other siblings of children with special needs. For most parents, the thought of “going it alone,” without the benefit of knowing another parent in a similar situation is unthinkable. Yet, this happens routinely to brothers and sisters. Sibshops and similar efforts offer siblings the same common-sense support that parents value. They let brothers and sisters know that they are not alone with their unique joys and concerns.
• Encourage good communication with typically developing children. Good communication between parents and children is especially important in families where there is a child with special needs. An evening course in active listening can help improve communication among all family members. Books such as How to Talk So Kids Will Listen and Listen So Kids Will Talk and Siblings Without Rivalry (both by Adele Faber and Elaine Mazlich) provide helpful tips on communicating with children.
• Encourage parents to set aside special time to spend with the typically developing children. Children need to know from deeds and words that their parents care about them as individuals. When parents carve time out of a busy schedule to grab a bite or window-shop with the typically developing child, it conveys a message that parents “are there” for them as well.
• Learn more about siblings’ experiences. Sibling panels, books, blogs and films are excellent ways to learn more about sibling issues.
• Encourage parents to reassure their typically-developing children by planning for the future of the child with special needs. Early in life, brothers and sisters worry about what obligations they will have toward their sibling in the days to come. Parents should be encouraged to plan for the future and share these plans with their children. When brothers and sisters are “brought into the loop” and given the message that they have their parents’ blessing to pursue their dreams, their future involvement with their sibling will be a choice instead of an obligation.

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.