May 24, 2012 1 Share

Keeping in Touch

Closeup of man's hand holding woman's hand.

I couldn't believe it, but even so, there it was: He was holding my hand. The large group had grasped hands with one another for the prayer, and he hadn't dropped my hand since. We were sitting on the living room couch at one of the L'Arche homes in Washington, DC at a regular Tuesday prayer night—as ordinary a setting as one could imagine. And yet in that moment it felt anything but ordinary. 

To offer a bit of backstory: My friend—let’s call him “Leo”—is not a big fan of physical contact. I've known him for five years now, and I was his housemate for two years and one-to-one personal accompanier for one … and yet I can count the number of times he's reached out for me on one hand. Yet for reasons unknown to me, he held on to my hand for about a minute after the prayer had ended. I sat, surprised, happy. 

It made me think of Willie, and how much like Leo he can be when it comes to touch. Willie will hug me if I come up to hug him; he'll hold hands and dance with me too. Yet, as with Leo, it's always me reaching out to him, never the other way around. When we were younger, I think I knew intuitively that physical proximity, rather than touch itself, was the way to go to be close with Willie. We'd race around the house, huddle in a heap together on the staircase, nap side by side. 

In the last decade, though, touch has been fraught with tension, because touch so often comes in the context of a meltdown. When Willie gets upset, he lashes out physically. Yet even so, one of the only semi-effective ways to help Willie calm down involves touch in the form of physical pressure. My parents will ask Willie, “Do you want pressure?” when he rolls himself up in our living room rug, and he'll almost always say, “Yes.” Perhaps that calming pressure is both physically necessary and emotionally stabilizing. It's a touch that he can control, specific to his needs. 

During the worst of Willie's aggression, I used to feel afraid to sleep in the room next to his. It was a terrible feeling, that sense of being physically afraid of my sibling, my brother. When I wrote about it for a college essay, I said, “At night, I feel as vulnerable as a blackbird in a field of snow.” In the course of his violent behavior, I'd lost something—the free, child-like sense of being at ease next to Willie. I'd lost the implicit assurance that, though we might tease and taunt each other, we were allies. It was something so basic that I didn't know I had until I lost it, and I wanted it back. 

It took me years to accept the fact that I won't get it back, at least not in the same way as I had it before. We cannot go back. We cannot erase the challenges we've been through. We can, however, come out on the other side of them. I can choose not to be afraid of my brother, even though his behavior can be scary sometimes. Accepting what is, I can appreciate the ways in which we can be close: by praying for one another daily, keeping up with our weekly phone calls, and enjoying the occasional visits. They call it “keeping in touch” for a reason; though there may be miles between us, talking to Willie and writing about him and his experience has helped me to be close to him in a way that I wasn't before. When I was living in the same house as Willie and resenting him and his seemingly-crazy behavior, we were farther apart than we are now. 

And so when I see Willie this weekend, I'll reach out to hug him, the way I always do. He'll hug me back for a fraction of a second, and then I'll let go. And for that fraction of a second, all will be well.

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Siblings with Autism

My daughters have gone through this. They are so much more at ease since my son is living in another home. We totally relate to this. Love and Peace, Susan Anderson