Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities
The Power of Sharing My Story
Josh (right) and his twin brother, Jacob.
Jacob was born on October 9, 1998, at 1:25 pm. Myself, at 1:27 pm. Since our first day, our lives have been intertwined. At two years old, Jacob was diagnosed with a severe form of Autism Spectrum Disorder. He is completely nonverbal, has severe intellectual and social issues, experiences sensory overloading and compensatory behaviors, and is affected by epileptic seizures, along with many more symptoms. This has not only changed his life, but the lives of everyone in our family forever.
As Jacob’s twin growing up, I had a hard time comprehending the circumstances of my situation. I always knew he was different and along with that came feelings of confusion, anguish, and isolation. As a child I remember walking at the zoo, feeling embarrassed by many eyes peering at my brother as he yelled and flapped his arms. I would lower my head, put my hands in my pocket, and wish I were anywhere but there. At school, everyone would ask why my brother was different, and I couldn’t give a clear answer because I didn’t know myself. I felt as though I was alone in facing my envy of others, facing my sorrow for being different, and facing my fear of asking why. Why us, why me, and why Jacob?
However, throughout all our hardships, my time with Jacob has been the greatest teacher. His interactions with the world around him made me realize how to be compassionate, how to be empathetic, and how to share love. I am lucky to have had these lessons, but it took me years of confusion and isolation.
Siblings with a Mission is a way for me to share the lessons that Jacob has taught me with the world. I joined in the winter of 2017 after I met its founder, Nathan Grant. I read a few of their stories (and then a few more) and instantly wanted to share my own. A simple idea propelled by a powerful community, Siblings with a Mission is a way to connect siblings and family members of children with intellectual disabilities who seek understanding through interactions with those whom they can relate. As Vice President of Siblings with a Mission, I have now been able to share my story and contribute in a meaningful way; I have spoken on panels, attended advocacy fairs, written stories and articles, and travelled the world sharing my story and showing the power that Siblings with a Mission can have to help a struggling family. I once felt confused, isolated, and disconnected with those around me. Now, I help run and write for Siblings with a Mission to ensure that those who read our stories can become less confused, less isolated, and less disconnected. By fostering this community, we hope to spread our ideas of love, compassion, openness, and understanding.