Feb 23, 2012 0 Share

Every Sibling's Fear

Author and her brother as teenagers.
Photo by William Fischer

As I sat down to write today, I couldn't help but give voice to a cacophony of fears that siblings of adults with autism share. I share this list with you not to frighten or depress you, but to stand in solidarity with you, to tell you that you are not alone in your fears. I write to you in hopes that, by not keeping these fears secret, we can diminish some of their paralyzing power. I also share this list because next week I'll be attending a gathering with local siblings for the first time, and I want to prepare myself to be present to them, to their stories and their relationships. 

Every sibling fears that there won't be a place for their brother or sister in the “adult” world. Every sibling listens to the latest news on healthcare or Medicaid funding and knows that it will have a direct impact on their loved ones. Every sibling is grateful for those who speak out at budget hearings and local advocacy groups, those who try to personalize the impersonal numbers, who communicate the needs of their families to senators and delegates. (What do Waiver slots translate to? They translate to parents and siblings being able to fall asleep at night.) 

Every sibling (and every parent, for that matter) fears that, at some point, they won't be able to take care of their brother or sister, and will need to entrust that responsibility to another. But every sibling also fears that they might be the one to step up and give daily care. Every sibling takes pause at the thought of having children themselves, knowing that their brother or sister's care may one day become their full-time role. 

Every sibling fears that they're not doing enough for their brother or sister. They fear that they don't live close enough to really be a part of their sibling's life … and if they do live close by, they still fear that they're not giving enough of their time and their heart. Siblings try so hard to strike the balance between giving their brother or sister a sense of relationship, of connection, while simultaneously respecting their sibling's need for time alone. Siblings are never quite sure they've got this balance right. 

Every sibling fears that their brother or sister won't have the things they long for: Real friends, a school where they can learn and engage fully, a love relationship, fulfilling work, greater independence, a safe, comfortable home to call their very own … in other words, a shot at the things that so many of us take for granted each day. 

Every sibling fears the sense of anger that can well up within. Anger for the times when their sibling's behavior is self-destructive, other-destructive. Anger for the instances when they can't communicate, when autism seems to divide them from their brother or sister. Anger for the small injustices of every day, and for the larger injustices that can frame their sibling's lives. 

And most of all, every sibling fears that their brother or sister doesn't know how much they are loved. 

These fears are real for me, and for other siblings of individuals with autism and special needs. However, I've come to believe that the last one, at least, is unfounded. As siblings, we will face the hard realities of caregiving. Time and time again, we will come up against a society that does not fully welcome and include our brothers and sisters, and all adults with autism. 

But the fear of your sibling not knowing your love? Nope. Not going to happen. Real love is palpable. Real love keeps showing up for another person. Real love cuts through the difficulties of the everyday and offers solid ground in a quicksand world. 

Even if your sibling can't speak to you or hear you … even if he or she may not say the words I love you … I want you to know that what you do out of love for them always counts. It always makes a difference. Today, I want you to know that they know, and keep your love alive.