A few years back, Alicia Arenas presented an engaging and powerful TED talk in San Antonio regarding what it means to be a sibling of a child with special needs. In her presentation, Ms. Arenas discussed her own difficulties and hardships of having siblings with special needs. She readily admits to the audience that the story of her childhood “is not a fun story to hear,” and that she was frequently “traumatized” by her early experiences. However, she realized that hers is an extremely important message to share with families who have a mixture of typically and atypically developing children. Ms. Arenas describes the “glass child” as “a sibling who has a brother or sister who requires ongoing attention and care above and beyond what we would consider normal parenting to be.” Ms. Arenas clarifies her use of the adjective “glass” (rather than titanium or steel) as not a way to label these siblings as fragile (quite the opposite, as glass can be quite sturdy), but rather because their caregivers frequently become “so consumed with the needs of their brothers and sisters, that when they look at the glass child, they see right through them.” Ms. Arenas explains that parents and caregivers must work to consider the unique emotional and psychological needs of their typically developing children; that they need to consider them as children who have their own struggles, joys, interests, fears, and dreams outside of their role as a sibling to someone with special needs.
Alicia Arenas presenting at a TED Talk in San Antonio, Texas (2010) on the effects of being a sibling to a brother or sister with special needs.
Photo Credit: youtube.com
It is reported that 2.8 million students in the United States have a disability. Around 57,000 of these individuals live right here in Chicago, and many, if not most, of these children and adolescents have at least one typically developing sibling. In my clinical work as a psychologist-in-training, I strive to always include the siblings of my clients into my work with the family. I frequently hear from these “glass siblings” that living with a brother or sister with a disability is particularly hard for them. Typically developing siblings are often tasked, most times unintentionally, to be an additional caregiver to the child with the disability, as there is usually more than enough work to go around at home. However, if not closely monitored, these siblings risk enmeshing their own self-worth and identity with the chaotic environment at home, causing them confusion and frustration. They may struggle to separate their own personhood from that as an additional caregiver. These siblings need consistent outlets for themselves. I encourage parents to spend copious amounts of individualized time with their typically developing children. I ask them to read books specifically on the topic of what it means to be a sibling to a child with special needs (follow the link under resources to check out available literature written specifically for the sibling). Another good idea is to dedicate multiple “special” nights throughout the month that involve personal quality time solely with the sibling (remembering that all caregivers should receive equal alone time with the child). I also encourage these families to foster the interests of their typically developing child. Parents are urged to connect the sibling to appropriate social groups, clubs, or teams in their area so they learn the importance of spending time outside of the home doing something they enjoy.
Twins Veronica and Isabelle Burden posing for a picture for Chicago Parent Magazine
Photo Credit: Liz DeCarlo
In her TED talk, Ms. Arenas provides several additional suggestions for parents and caregivers of both typically and atypically developing children. First, she advises parents to connect the “glass child” with support groups designed specifically for children affected by a sibling with special needs. Here in Chicago, there are number of available resources and groups for such children. Rush University Medical Center has posted an extensive list of such support groups on their website, which is included with the blog resource list. Ms. Arenas also suggests the sibling receive their own individual counseling, even if there is nothing apparently of concern with the child’s behaviors. “Glass siblings” may feel responsible to keep silent about their own difficulties, so as not to further disrupt the already chaotic household. However, there may be significant unvoiced concerns felt by this child that should be addressed through individual therapy. Having an appropriate and safe place to talk to a professional about the stresses of living with a sibling who requires special needs can be tremendously beneficial. Several mental health clinics in Chicago are available to provide such services and many take public and private insurance. If the family does not know how or where to set up services, they may be encouraged to ask their primary care physician for a counseling referral. Finally, Ms. Arenas stresses the importance of verbalizing unconditional love to these glass siblings. She stresses that the words “I love you no matter what” go far in helping the child know they are important just for being them, no matter what difficulties are faced at home. The child needs to know that they will never lose their parents’ love and affection, even when times are stressful and unstable. If you are a parent of children with and without special needs, challenge yourself to go above and beyond in providing the necessary supports and attention for your own “glass child.”
