My sister paced the hallway, screaming. Her hands covered her ears. My mother stood next to her, still dripping from the bath. Mom calmly encouraged meditative breathing but my sister kept yelling about what the voices in her head were telling her. I could only watch.
My autistic sister was diagnosed with bipolar disorder at age 11. Auditory and visual hallucinations are a hallmark of Bipolar I, and they can manifest in a most frightening way.
The fear and unpredictability of my sister’s disorder makes me feel powerless. That night, we were scheduled to attend a family dinner at my grandmother’s house. Those plans changed at the last minute as my parents struggled to stabilize the situation.
I felt helpless. I felt scared for my sister. I felt frustrated. I felt angry that once again plans changed to accommodate my sister’s needs. I felt alone as my parents focused their energies on her. By the time she fell asleep, my parents were emotionally drained and had nothing left to give to me. I felt guilty.
My younger sister is epileptic, autistic, profoundly ADHD, Bipolar I and has a language processing disorder. To say that she has struggled throughout her life is an understatement. Watching her battle bullying from peers, overcome neglect from teachers and other adults, and struggle with studies that came more easily for me was very challenging to witness. Feeling like a bystander while my sister was excluded from our community caused me to feel shame and guilt, and I struggled trying to find a way to help.
Over time, an idea formed—what I felt in these situations couldn’t be unique. I was sure that if I had these feelings, other children who have siblings with special needs must also feel the same way. I needed to find those other “special siblings” and bring us together. We needed each other.
In July 2017, I created Special Siblings, a support group for kids like me. I facilitate monthly meetings that allow my peers to be heard and validated. I coordinate with local mental health professionals who volunteer as guest speakers. We promote understanding and acceptance of ourselves and our siblings. Not only did I find a community, but I’ve become one of its leaders. Over time, common themes have emerged: feeling that they need to be perfect, feeling they cannot express their feelings at home, feeling their homelife is not normal, feeling their problems are minimized, feeling jealous, feeling isolated, feeling frustrated when faced with intolerance, feeling they are asked to do too much, and feeling they grow up too quickly.
Four months later, Special Siblings was granted 501(c)(3) status. It is my hope that one day, rather than feeling fear or frustration, we can all be the voices of comfort for our siblings.
Most importantly, Special Siblings has taught me to be a better person. By empathizing with other children in the group, my empathy for myself has grown. I now realize that my struggles are not unique. For years I suffered in silence. My feelings are validated and normalized within this group.
Indeed, the benefits of having a sibling with special needs are endless. They include becoming more empathetic, more responsible and resilient. While these are incredible traits, many children have feelings they are often ashamed of. Many of these children suffer in silence, having nowhere to turn and no one to understand them. Additionally, many parents are too exhausted from handling the affairs of the special needs sibling to focus on the neurotypical child. As a result, the issues common to these neurotypical siblings often go unnoticed and a gap persists in our community.
As I grow up, so does my sister. No longer does she have to worry about middle school bullies, but she does have to worry about keeping employment, struggling to live independently, and maintaining mood stability. I still worry about her every day, but those worries are overshadowed by the love I have for her, and the support that myself and her entire team provides her. I am confident that she will be able to live out a fulfilling life, and I now know that I have the tools I need to be a supportive sister to her.
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Author Bio: Katelyn McInerney attends North Carolina State University. She founded Special Siblings, a 501(c)(3) nonprofit supporting special needs siblings. Selected as a Park Scholar at NC State, she is majoring in Statistics and Genetics with hopes to pursue medicine. In addition to working as a statistical genetics research intern in the Aylor lab, she is currently President of NC State’s chapter of the National Organization of Rare Diseases, a GLBT Student Advocate, and is ranked first in her class. Selected as a Diller Tikkun Olam Awardee, Bronfman Fellow, Coca Cola Scholar, National Merit Scholar, and Prudential Spirit of the Community Awardee, Katelyn served as a research assistant for a neuroscience lab at the University of Alabama at Birmingham while in high school. She also started her high school’s Sign Language Club and graduated Valedictorian out of a class of 335.