Having a sibling is one of life’s greatest joys. Siblings are ours to love, hate, learn from, and grow with through the years. Siblings are the only people that fully understand our lives from an insider’s perspective; they understand the obstacles and triumphs of our inner family life. For most children, having a sibling means having a built-in best friend.
While this is true of most sibling relationships, children with siblings that have a disability may have a different experience. The sibling relationship with children with special needs is an under-researched topic. The emphasis in the special education world is usually placed on the parent-child relationship. Having a sibling with special needs can mean a variety of outcomes for different families, but common challenges amongst siblings manifest in similar ways. In looking at helping families work through some of these challenges, here is what the research says about ways to support the siblings of children with special needs:
One of the most common challenges that siblings of children with disabilities face is the pressure to be perfect (Strohm, 2006). Knowing that their parents are under a great deal of stress, siblings may try to reduce their parent’s stress by becoming a “people pleaser” or a “perfectionist.” The “well sibling” may be reluctant to share their concerns with their parents for fear that they are becoming a burden to their family. Being aware of the pressure to be perfect, as well as encouraging siblings to communicate their feelings and concerns, can help siblings to realize that it’s okay to have their own needs too.
In any family, children are asked to take on a certain level of roles and responsibilities based on what the family needs. In a family where one or more child has a disability, these roles and responsibilities may be increased. Siblings are given functional roles within their family based on factors like temperament, development, and other family dynamics rather than solely by birth order or age (Schuntermann, 2007). Depending on the family, siblings may not be asked to take on responsibilities related to the family functions, but they may be required to care for themselves independently. This premature independence may cause the child to believe that they need to behave like an adult. Parenting a child with a disability is not an easy task, and it is natural to need extra support to complete day-to-day tasks. Making sure that siblings’ jobs and responsibilities are age-appropriate helps ensure that they are not overburdened by tasks that are beyond their developmental level.
In the same way that parents need to know that they are not alone in their journey of parenting a child with special needs, siblings need a support system as well. Feelings of isolation are common in siblings of children with disabilities, which is why finding a support group is so important (Strohm, 2006). There is comfort in knowing that there are other children in a similar situation, and this can provide an opportunity to share feelings and challenges with same-age peers.
“Fear of the future” is one of the major challenges siblings of children with special needs face throughout their lives (Strohm, 2006). According to the family systems model, “Children live within a context – the family – and when something happens to one member; everyone is affected” (Darling & Seligman, 2007). The diagnosis of a disability within the family affects the entire system. Siblings of disabled children have real worries and fears about the future, and creating a space to share these fears is critical in supporting the family as a whole. Talking about the future as best you can and being open to questions is one way a parent can help ease a sibling’s worries. As with anything, honesty is the best policy when it comes to talking about the future. Saying “I don’t know” is also okay. The main thing is showing the child that they can bring their worries and fears to you without judgment.
Parenting a child with a disability takes an incredible about of time and energy. Spending extra quality time with siblings of children with special needs helps them to feel important, and reduces the need to “act out” in order to get attention (Strohm, 2006). Opportunities for open and honest communication can be fostered by more one-on-one time, and these moments have a profound effect on how siblings view themselves within a family system.
“Siblings, whether close or distant, are fellow travelers through the life cycle. They share unique, private knowledge about their parents and families, possess a common genetic base, and carry the history of the nuclear family. They may be best friends, playmates, and soulmates or competitors, mentors or mentees, nurturers or nurtured, the ones with whom to fight or settle conflict, and positive or negative role models” (Abrams, 2009).
Siblings of children with special needs are important members of a unique web of family relationships. Research suggests that children with disabled siblings are best supported when families are proactive about siblings’ feelings of isolation, grief, or never being “good enough.” With plenty of opportunities for open and honest communication with parents, children are more likely to have a positive experience with their disabled sibling, be more resilient, and thrive in the face of adversity.
It takes a village!
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