From Helplessness to Courage: A Sister's Story 

Wednesday, November 7, 2012 Autism Speaks View Comments

Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism and intellectual disabilities (and empowering caregivers to do the same). Caroline blogs at A Wish Come Clear, serves as a columnist and features writer for Autism After 16, and works as a copywriter for non-profits and small businesses with a special needs support focus. Readers are invited to receive a complimentary copy of Caroline's digital book, 'Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive)' via A Wish Come Clear. 

It is my first memory, the one that will be in my bones when they are but dust. I stand in a white room with a high ceiling. Sunlight comes in through the windows, making patterns on the rug. The rug is faded where the light strikes it. Children my age are playing on jungle gyms, yet I do not move to join them.

Suddenly I’m in my mother’s arms, and she’s holding me tightly; my hair is wet with her tears. What's wrong? I have no idea. As my mother lets me go, she speaks to a woman at her side. They mention my brother’s name, saying words I don’t know yet:  Autism Spectrum Disorder. Diagnosis.

I’m four years old. My brother Willie is two. I don't understand any of this, of course, but I know that my mother is weeping and I want to comfort her.

Years pass. I finally ask my mother if the room I remember so vividly was, in fact, real. She looks at me with astonishment in her eyes. “You remember the diagnostic center? With the jungle gyms and the high ceilings?”

I do remember, because she reached out for me.

***

Fast-forward thirteen years, and Willie – my hilarious, gifted, beloved sibling – starts struggling with self-injury and aggression on a daily basis. I cry out:  Where is my brother? This unfamiliar person punches holes through walls and bites himself.

Our house feels like a war zone. In desperation, I beg my parents to send Willie away. We talk about it for a time, but ultimately, my mother says, “No. I can't,” and my father agrees. Even though a part of me is furious with them, another part of me sees how powerful, how beautiful, their choice is.

My parents, like so many others, refuse to give up on their child. And in these dark hours, the love that sparks that choice is the only light I see.

***

Today, I listen as my mom describes Willie's latest meltdown. He's been doing well, so this unexpected episode has been particularly challenging. He's hurt himself, and my mom as well.

I watch my mother weep. I hear her say that she feels like a failure. I am tempted to close off, or get angry … anything to avoid feeling as helpless as I feel right now. Why can't my brilliant brother stop hurting himself and others?

My first memory is shaded with this same helplessness and confusion. But now, thanks to my parent's example, I take courage. I can't give my mom the answers we both long to hear. What I can do, however, is tell my mom my truth:  Angry and afraid as I am, I still love and accept Willie. And I tell her that she's an amazing mom, the farthest thing in the world from a failure.

She reaches out her hands, saying, “Thank you, sweetie.” Nothing is different, yet everything has changed.

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