Over the past several years, I have met monthly with an extraordinary group of people. We come from many different backgrounds and have a diverse set of goals for our futures. What we share, however, is especially unique. We are all siblings to children and adults with special needs. This often isolating experience has drawn us together, and when I was asked to write about the group and my own role as big sister to Sean, I saw great potential in reflecting, more publicly, on something us ‘sibs’ are often hesitant to and ashamed of sharing. I offer you a glimpse inside our world, and, hopefully, a lesson in love, acceptance, and a little bit of faith.
Being a sibling of someone with special needs can be very isolating, frustrating, and overwhelming. Your ideas of ‘normal’ are quickly and forever skewed, and the typical teenage refrain of ‘nobody understands!’ carries over well into adulthood. For a long time, I felt alone and lost in trying to forge a relationship with my younger brother – I never quite knew how to interact with him, and struggled with how to ’explain’ him to my friends (or even other family members). There is a tremendous sense of guilt and shame that can follow you as a ‘sib’ (as I now get to call myself), and you can very easily feel like the only one living in and working through this life. Finding the Sibling Support Group was like a life preserver being thrown while I was barely treading water. If I had a nickel for the number of times I’ve exclaimed or thought ‘Me too!’ in a session … I would have a very large number of nickels.
There is indescribable comfort in knowing you are truly not alone in the struggles and challenges you face as a sib; there is a sense of normalcy that you didn’t think was possible. As a group, we have created our own ‘new normal’: a safe & brave space to share the good, bad, and the ugly of our unique family situations. We laugh, cry, high five, and hug with people who get it. They understand, truly and completely, who we are and what we go through. There is no need to justify or explain in a place with no judgement. We can be messy, ask questions, share stories, and, finally, feel like our experiences, feelings, and thoughts matter. I have found a new niche and home for something that always felt so ambiguous and strange, a part of my identity I always knew was there but never truly understood as important or valuable until now. I love coming ‘home’ to the group every month, and take such joy and pride in helping other sibs along their unique journeys. We truly are our own group of siblings in the support group, and I love my new family.