Special Needs Focus: The Sibling’s Experience
When I was a young teenager, I joined a group of other teenagers through TARC (now The Arc of Oklahoma). The common bond between us was that we were all teenagers who had a sibling with special needs. Our group’s goal was to provide fun, social activities for our siblings, and while we did achieve that, the main accomplishment was accidental. For the first time in my life, I met other people who had similar family dynamics. I didn’t have to pretend everything in my life was “normal,” and I finally made friends who understood me without explanations. My other friends were usually nice to my brother, but these new friends understood like no one else could. We “got” each other.
When a child has a disability, the entire family feels the impact. A child who has a sibling with disabilities deals with the complications of having a family member with special needs, and they must do so equipped with fewer coping skills, those of a child. Usually left out of the communication loop, they know their sibling has special needs, but often they aren’t sure what the needs entail, what has caused the disabilities, or what the future may hold for their sibling or themselves. Confusion, guilt, and fear are common, as is the reluctance to ask questions of their already stressed out parents.
The “well” sibling is called the “other” sibling, the “healthy” sibling, the “normal” sibling, or my favorite, “the glass children.” The term “glass children” has become accepted in the adult sibling community as an apt description of a sibling to a person with special needs. It’s not the presumed portrayal of being fragile and easily breakable; siblings of people with special needs are often the strongest people you’ll find. The term “glass children” refers to the fact the siblings are looked right through as if they don’t exist. People tend to offer care and words of concern to the parents and the child with special needs, ignoring the other child. The “glass child” feels invisible.
The “well” sibling frequently assumes the burden of trying to be the perfect child. Sometimes this is a self-created expectation. The “well” sibling senses they should go out of their way to avoid creating extra work for the parents. It’s typical for siblings to make sacrifices, quietly and with smiles on the surface, to provide for the child in the family with special needs. The sibling’s role is unique and can only be fully understood by other siblings of people with special needs. Peer groups, such as the one I found as a teenager, provide a source of support, education, coping skills, and camaraderie for siblings of people with special needs.
Sibshops is a group for children who have siblings with special needs in Tulsa and surrounding communities. The group is for children ages five through fourteen and breaks into smaller groups of five through nine-year-olds and ten to fourteen-year-olds for age-appropriate discussions and activities. Sibshops provides brothers and sisters an opportunity for peer support in a fun recreational setting. Participants have a chance to meet with other siblings of children with special needs, talk about various aspects of having a sibling with special needs, and feel accepted and understood. They also learn how to handle difficult situations regarding their relationship with their sibling with special needs.
According to specially trained group facilitator Lora Roberts, “Sibshops are action-packed workshops that celebrate the many contributions made by brothers and sisters of kids with special needs, acknowledge that being the brother or sister of a person with special needs is for some a good thing, for others a not-so-good thing, and for many, somewhere in between. They reflect a belief that brothers & sisters have much to offer one another if they are given a chance. The Tulsa Sibshops model mixes information and discussion activities and games.” Sibshops are not therapy but a safe, comfortable, and fun environment for siblings to share common experiences in a supportive place.
Siblings have the longest lasting relationships with individuals with special needs. It’s essential that their role is acknowledged and their needs addressed. Because of the pandemic, the Sibshops are currently being held through Zoom, but will resume in-person groups as soon as it’s deemed safe.
Here is a list of books that might help siblings of people with disabilities. For middles school and above, I would add Wonder by R.J Palacio to that list. If there is one book I wish I had written, this would be it. Although the main character in the story does not have intellectual disabilities, his facial differences create a sibling relationship and family dynamic with which I identified.
TulsaKids guest blogger Kelsey McAfee recently put together a list of books about kids with disabilities available through the local bookstore Eleanor’s Bookshop, on Route 66. Click here for the link to those books.
A recommendation for all kids, not just siblings, is by a local author, Andee Cooper. Her book is written for young elementary ages and explains the seizures her son experiences. It is titled “Sometimes I Get the Wiggles” and is available through Amazon, Target, and Barnes and Noble.