When a family member has special needs, siblings grow up fast. Parents sometimes speak of how life changed for them when they began caring for a child with disabilities, but for me, and for many siblings, the special needs household is our only frame of reference.
Growing up, even the most devoted siblings are likely to face emotional turmoil, given parents’ focus on the daily demands of caring for a child with disabilities. All kids like to be the center of attention from time to time, but those moments are likely to be rare for the typically developing offspring in such homes. Consequently, it’s important that parents set aside time to devote to each child separately.
Siblings often assume a protective role in relation to a family member with special needs, and their circle of friends usually consists of those who are compassionate and tolerant beyond their years. Siblings learn early lessons about what matters most in life and sometimes find it difficult to relate to people who grew up differently.
Because the entire family unit is affected, it’s important to communicate openly with all members about a child’s disability and for decisions to be made as a family. At some point, many siblings will assume caregiving responsibilities—sometimes for longer periods than their parents–and having an open dialogue can be valuable preparation for the future.
Even the most involved siblings, though, need help in navigating the transition to caregiver, and a comprehensive letter of intent is one of the greatest gifts that parents can bestow. Such a document should include medical records, the status of public benefits, expectations concerning residential and employment options—anything that can help to ease the stress of assuming responsibility for the needs of another human being.
I’m a board member for Supporting Illinois Brothers and Sisters (SIBS), the Illinois chapter of the Sibling Leadership Network (a partner with The Arc of the United States). SIBS provides support for siblings of individuals with disabilities in Illinois through various activities and resources designed to 1) provide opportunities for siblings to connect personally with one another; 2) provide access to information of special importance to siblings, including resources on future planning and community support; 3) educate agencies, parents, and the public regarding the unique needs of siblings and the importance of sibling support; and 4) provide siblings with the necessary tools to advocate for and improve the lives of their brothers and sisters. We take calls from brothers and sisters who are overwhelmed by the demands of their new duties. We also co-sponsor a Sibling Conference with The Arc of Illinois, as well as organize an annual “Family SibDay” with programming for the whole family that focuses on sibling issues.
I’ve recently joined the law practice my father founded 11 years ago to focus exclusively on serving families of children and adults with developmental disabilities, intellectual disabilities and mental illness. Having a brother with autism, I am able to bring a sibling’s perspective to discussions with our clients.