Saving Ben: A Father's Story of Autism

Expect a Miracle

84 Expect a Miracle In April of 1995, as Easter approached, I revived my diary. Many of my recollections from this period are based on diary entries. April 2, 1995. Seven-year-old Ben in tow, I went to a Holy Week healing service with the Reverend Shelley Hamilton, a minister at my church. “Agnes Sanford says, ‘Expect a miracle,’” I reminded her. “Where is the miracle?” “The miracle must happen in you,” said Shelley, “and in Ben, and in everyone in your family.” She prayed for me, “God, we challenge you. How long will this man have to stand here at this altar in pain?” With Easter Sunday just days ahead, I struggled with my faith and with my role in Ben’s recovery. Mom argued that Ben needed to be placed in an institution. “You’ve worked with Ben for a year now,” Mom said, “poured everything you had to give into him. When others stumbled and fell, you kept going.” I agreed with most of her points: that Ben had not recovered; that he needed a consistent environment; that I could not meet all his needs by myself. Sue couldn’t do it either. “I want him to go as far as he can,” I said. “What if he already has?” Mom asked. Expect a Miracle ❧ 85 “I don’t believe it,” I said. “I see progress every week.” But she had a point. It was too late to get a full recovery of the kind Catherine Maurice facilitated in her children. Ben evidently belonged among the 52 percent of children in the Lovaas study who improved but did not fully recover. He’d advanced, but I had to agree that he would likely never lose the autistic label, and never be indistinguishable from normal children. Unless we could ramp his program back up to forty hours per week and keep it there indefinitely. Unless somebody could manage Ben’s recovery better than I. April 3, 1995. About midnight I woke up to Ben’s hysterical laughter. He was smearing his feces on the walls, the blankets, his clothes. I gave him a cold shower, got out the bucket and brush, made him clean it up. He wouldn’t stop laughing. I snapped. I slapped him on the back with my open hand. He didn’t cry. But he did stop laughing. Frightened and ashamed, I called Dr. Dunckley. “I lost it,” I confessed. “I slapped Ben.” “How long have you been working on recovery with him?” Dr. Dunckley asked. “A year.” “For Ben to revert to a behavior so symptomatic,” he said, “would seem to indicate a lack of appreciation for the sacrifices you have made.” Exactly, I thought. “What’s been going on in your life?” “Grief.” “Your grief indicates there is a loss somewhere,” Dr. Dunckley said. “I’m thinking about going back to work full time,” I explained. “But I’m not giving up. I’m planning a full-scale recovery program.” “Who will manage the program?” asked Dr. Dunckley. I saw in a flash that what I was about to attempt was madness. Catherine Maurice ran a full-scale program. But Maurice had pre- 86 ❧ saving ben: a father's story of autism school children, a housekeeper, and a husband who supported her both financially and emotionally. I was hoping to achieve the same results, complete recovery, with an older child, as a single parent, no domestic help, no significant financial assets, and a psychotic ex-wife. While I was working full time. “No one can work full time and run a full-scale recovery program ,” said Dr. Dunckley. He was right. Last time I’d ended up kicking holes in the wall. “You need a vacation, a break,” he said. “You need to get something into your life besides Ben.” “That’s why I’m going back to work. I’ll hire someone to manage the program.” A few days later, Ben and I took a long walk by Bachman Lake. The path was full of children, lovers, families. Ben kept leading me to the lake, and I sat by him and did pat-a-cake and finger plays, thinking about Mom’s suggestion, an institution, a “home” for Ben. If a divided house caused the kind of regression I’ve seen from time to time in Ben—the feces smearing, for example—and if neither Sue nor I...