Many, many thanks to everyone who commented on my last post and to those who wrote me—it meant a great deal. I know it’s sometimes unpleasant to read of unpleasant times (Lord knows it’s not much fun to write about them either), so I truly value those of you who have stuck with me. I have gone back and read your kind, loving, and caring words more than once and been sustained by them. We are grateful for your continued prayers and good thoughts for Benjamin…and for us.
Benjamin is home from the hospital now. Our time now is filled with the slow rhythm of work, walking, talking, and quiet porch sitting, punctuated by visits from loved ones and trips into Asheville for counseling. In some ways, the past few weeks have taken me back to Benjamin’s very early childhood, before he started school.
When something like this happens with your child, you start to question everything. In Benjamin’s case, this questioning is even more intense because I worked so closely and intensely with him when he was small. As I’ve mentioned before, Benjamin’s autism was much more pronounced when he was young. If not distracted, he would spend hours rocking back and forth or spinning or even just flapping his hands and staring at them as though they were separate things. Until the age of four, his speech was mostly echoing back to us what we’d said to him.
We had very little money then and there were few options for help for Benjamin, other than some physical therapy for his hypotonia. Tom worked long hours as a carpenter just to keep a roof over our heads, so I felt like it was mostly up to me to help Benjamin—to convince him, in a sense, that engaging in our “world” was worthwhile. I read everything I could get my hands on about autism, and we got some helpful suggestions from the place where Benjamin was diagnosed, TEACCH.
The first thing I wanted to know then was what it felt like to be Benjamin. So I got down on the floor with him and rocked back and forth to the same rhythm, trying to hear the same music he heard. Benjamin was always fascinated by light. He’d stare at any light, rapt, as though he were seeing something we couldn’t—angels, perhaps. He also liked to sit in the morning sunbeams as he rocked. So there we’d sit, rocking in and out of the light streaming into our living room. It was very soothing, actually, and I’ll have to say that I could see why he might prefer it to the unpredictable inconsistency and discomfort of “real” life.
I’ve been thinking a lot about that, and the questions cycle through my head over and over. What could I have done differently? What if I’d taken him out of school and taught him at home when we couldn’t get his teachers to try to protect him from the relentless bullying? If I’d done that, how would he have learned what he needed to get along in the sometimes cruel world? And the biggest one, I suppose: Did I even do the right thing by nudging him gently into our world?
But those are just the questions that go through my head at night, when I’m lying there waiting for sleep to come. Really, I think perhaps questions about the past are only useful now if they somehow help to answer the more immediate and more important question: How can we help Benjamin to find wholeness?
One morning recently, while Benjamin was eating breakfast and I was in the kitchen working, I put on the CD my dear friend Jayne had sent us. In the note she sent with it, she said that she hoped the music would be a balm to my soul. And indeed it was. As I listened, I looked at Benjamin. He had his eyes closed and was rocking back and forth, moving in time to the music. I smiled to see that and closed my own eyes as “Be Still My Soul” began to play—the music seeming almost like warm hands stroking my weary spirit. I rocked back and forth, too, just as had almost twenty years ago when I was trying to connect with my sweet boy, trying to convince him that my “world” was a place worth living in. When I was trying to see that world through the eyes of Benjamin.
And, now, as it was then, progress is slow coming. One day at the time, one hour at the time. Two steps forward; one step back. But now, as then, we are glad to be moving forward. And we celebrate the smallest victories, relish the simplest pleasures, and I thank God, without ceasing, that He sent Benjamin to be my beloved son.