Feb 07, 2013 0 Share

What We Do for Love

Illustration of four hearts with gears connected.

My parents are always reluctant to tell me that Willie’s had a hard time. They want the best for us both; they want him to have good days, and they want to spare me the difficult details. But I’ve been there during the worst of Willie’s meltdowns. I know how stressful, frustrating, and draining it can be to support someone who’s determined to hurt himself and others. At times Willie’s behavior seems willful; at other times, involuntary. Regardless, the fallout is the same: Willie wrapped in the living room rug (which provides a sense of calming pressure), and weeping because he feels terrible about having lost control again.

It’s a strange role, being the sister and sole sibling in these situations. In one way, I’m Willie’s peer, the person he names first when asked if he has a friend. I love and accept him as he is and want him to have the best possible life. Yet at the same time, I’m also connected to my parents’ perspective, trying to help Willie. When my parents talk about Willie with me, I hear how proud of him they are; as my mom noted recently, “He’s been doing so well with his weekly piano lessons, and he’s playing pieces at church for the special music section of the service. Those are things I only dreamed for him, and now they are happening.” So I know that they realize how far Willie has come in the last few years. All of us cherish these hard-won victories.

That said, I also hear the discouragement in their voices when Willie has yet another major meltdown. Even as they do their best to stay positive, they have to be realistic, too. For example, I hear their concerns about traveling, about bringing Willie with them on a plane ride. These worries are well-founded, because of what’s happened on plane rides past. (Imagine trying to calm a tall, strong, autistic young man having a meltdown in a middle seat. Picture him frantic to get out of his row as the plane starts its descent; you do your best to help him calm down even though he’s taking swings at you, as fellow passengers and concerned in-flight attendants look on.)

Yet even so, my parents and brother are scheduled to travel together for a long-awaited visit with my husband and me in Alabama in April. True, they will be taking precautions: They’ve consulted with Willie on their itinerary, and chosen the shortest possible flight and a longer drive rather than a change of planes, but still. They are brave to attempt this at all. No, they are downright heroic.

I love to “dig for treasure” in the small moments of the everyday, but sometimes I wonder: Has any “significant” progress been made? Will Willie ever be through with his aggressive and self-injurious behaviors, or will it be a lifelong struggle for him (and for us)? These questions led me to wonder: What were we dealing with at this time last year? Were we hopeful? Discouraged? Full of curiosity, I paged through the Autism After 16 archives, and came upon “The Mystery of the Fleeting Expression,” published on February 2, 2012.

In that piece, I quoted Dr. Darold Treffert, who said, in an interview about autism and savant syndrome: “In watching caregivers over the last few decades, I've witnessed the power of care and love and concern ... I've learned as much about that as about synapses and neurons.”

His words seem all the more appropriate and resonant now. I share his sense of wonder, because quite simply, I don’t know how my parents do it. I don’t know how they put one foot in front of the other and carry on. And sometimes I don’t know how I keep writing about it all, seeking sustenance in telling true stories. But then, what’s the alternative? Giving up? As challenging as loving Willie can be, there is no other viable option. And that—the very absence of choice—is strangely helpful. The only way out is through, and we are being transformed along the way. Through we have gone for a decade, and will continue to go.