By Jamie Davis Smith
Having a sibling with special needs is a reality many children are born into, including my three typically developing children. Of all the things my children experience that I never did, their experience of growing up with a sister with significant disabilities is something I struggle to understand, even as I watch it unfold daily.
The advantages to having a brother or sister with special needs are numerous and include being more empathetic, more responsible and more resilient. However, these typically developing siblings also shoulder tremendous burdens that are not often or easily discussed.
Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. Feichter discovered that there is a lack of information regarding the full experience of having a sibling with special needs when she searched for information to help her older daughter. She wanted to better understand the needs of her typically developing daughter, as well as help her daughter connect with other siblings with the same struggles, so Feichter began interviewing siblings of individuals with special needs for her in-progress documentary, which has the working title “Not Typical.”
While every sibling — and every family — is different, Feichter found some common experiences, many of which my children are having.
Feeling like they need to be perfect. Siblings of individuals with special needs know how hard their parents work to ensure all of their sibling’s needs are met, and often see their parents struggle to meet these needs. Many feel like they can’t make mistakes because that would add to their parents’ burden, so they believe they must be perfect at all times. This is an impossible standard to meet, and can lead to stress and feelings of inadequacy. One girl said she felt like she “had to be Ms. Perfect and not have any problems for [her] parents to deal with.” Another said that she felt as though she could never be “enough.”
Feeling like they can’t express their feelings. Most typically developing children love their sibling with special needs. Yet they may also resent how much of their parents’ time is taken up by caring for their sibling or feel embarrassed about their sibling’s behavior. One girl said she “was never allowed to mourn openly or to be mad or sad about [her] brother” and another said her friends thought she was being mean if she said anything bad about her sister, even though friends with typically developing siblings often complain.
Having a different idea of family and home. For most children the concept of family is based in togetherness. But when a sibling has special needs, family quality time may look different. One girl recalled that her mother was “assigned” to her sister with special needs and her father was “assigned” to her. The family often spent time apart, especially when it involved leaving the house. In many families, the sibling with special needs may not be able to attend certain events or go certain places for a variety of reasons, including therapy and medical appointments, physical barriers to access, or sensory issues. In some cases, the presence of caregivers and therapists may redefine what a family home is for children. In my home, for example, our child with special needs is normally fed by a personal care attendant. A therapist is often present at our family meals as well. Nonfamily members are typically also present even during lazy weekends at home. Some siblings said that places outside the home, such as school or a relative’s house, are more of a refuge for them than their home.
Feeling as though their problems are minimized. Sometimes a sibling with special needs has complex and even life-threatening problems. An issue faced by a typically developing sibling, whether it is a problem with a friend or an academic struggle, may seem small compared to having limited mobility, learning difficulties or sensory issues that require intensive care or prevent a child from attending the neighborhood school. One girl said her parents rarely dealt with her problems, instead telling her to be “strong.” Another felt her parents never took her problems seriously because they considered her the “lucky one” for not having a disability.
Feeling isolated. Typically developing siblings may be lonely because they don’t have peers who have siblings with special needs. So they feel different when their friends ask “what’s wrong with your sister?” Some children also feel self-conscious about their sibling with special needs, and aren’t sure when or how to tell their friends about him. Others feel uncomfortable inviting friends over because they are unsure of how their friend or sibling will react.
Dealing with intolerance early and often. Children learn early that there is not universal acceptance for individuals with special needs, and that their sibling is not welcome everywhere that typically developing children are. This can be deeply disappointing to typically developing children who want to have shared experiences with their sibling. They regularly encounter individuals who refuse to move from seats designated for individuals with disabilities, and those who make unkind comments about other accommodations their sister needs. These early lessons in intolerance, and even hate, can affect their world view and make them cynical or resentful of the limitations placed on their sibling and themselves as a result.
Feeling like they are asked to help too much. Some typically developing children are expected to help care for their sibling with special needs from a young age, even if that sibling is older. One girl said that she felt like the “attention police” at home since her mother was constantly telling her that she had to pay attention to her sibling with special needs. Others are expected to push wheelchairs, participate in therapy sessions, or attend to their sibling’s personal care needs by feeding them or helping to get them dressed. Many are told early on that they will be expected to care for their sibling when their parents are no longer able to do so. This puts enormous pressure on them.
Feeling like they must grow up quickly. Because of the sum of their experiences, from feeling as though they are on their own to handle their problems to feeling pressure to be perfect to being given responsibility for their brother or sister, some siblings of children with special needs feel as though they are forced to grow up too quickly.
Most typically developing children love their siblings with special needs beyond measure and are close to them. But to better understand and support them, it’s important to acknowledge their struggles. There is a need for more information about the experience of growing up with a sibling with special needs. While there are a few places the stories of these siblings are told, such as the fictional book “Wonder” by R.J. Palacio, hearing from the siblings themselves in “Not Typical” will help many feel less alone and better understood.