By David Royko
After two and a half months, it was finally time for Ben to come home, if only for a day.
Karen and I had been looking forward to this from the moment we walked out of the ODTC in June, leaving behind a boy hollering in panicked anguish. Every visit since then had gone wonderfully. Well, maybe not the last one. Ben’s gastro distress brought forth a long, messy incident in the bathroom of Applebee’s, and another as Ben walked back into his unit at the ODTC. But cleaning Ben up in the Applebee’s bathroom, though in no way pleasant, was a heck of a lot easier to get through than usual because I had just had 2 months of no crap-cleaning, the first time in 13 years. I wouldn’t have any more to clean that night, guaranteed, also something we’d not known since becoming Mom and Dad.
But for anyone else who happened to pass through the bathroom, Ben was just as big a deal as ever, and a huge deal to the little toehead, perhaps five years old, that stood, looking paralyzed, staring at the half-naked Ben as I cleaned him as best I could with wet paper towels. Ben and I were partially blocking the path out of the bathroom, and I moved over further and said, “It’s OK, you can walk past us.” Toehead remained statue still, with one hand on the door of a toilet stall, the other pressed against his side. I kept cleaning. Finally, his father popped his head into the bathroom and said, “Come on.” That broke toehead’s reverie, steering as wide a berth as he could as he scooted between the wall and the mess.
But most of our weekly visits in Oconomowoc went well, filled with swimming and driving and trips to restaurants and McDonald’s and Krispy Crème, and even most of a movie.
Best of all, it seemed like Ben was happy. In fact, it is very possible that Ben was happier than he’d ever been. His days are jammed with activities and tasks from morning until night. Every minute is scheduled. Even the downtime is structured, with rules and responsibilities. That’s what Ben needs and we could never have given it to him. It’s also what allows us to love our new lives.
Last weekend was Ben’s first visit home. And it was a joy.
But Ben is still full of surprises. As we pulled up, Ben stared at the house and then looked at us. “Go to McDonalds,” he said. So we did--drive through, of course. Only now was Ben ready to get home.
He walked into the house and stared momentarily at the things that had changed, like the new couch in the living room. Soon, we were in the back yard, and he swung on the bench swing for two hours, as happy and relaxed as I have ever seen him. He spent the rest of the day with us, and when it was time to go, Ben and I got in the car, and headed back to his new home.
As we started off, Ben had his serious but not unhappy look on his face, until I played a favorite CD of his, which made him grin from ear to ear.
It was the end of summer, and we had done it--he had done it. Ben was in a good residential school, and he was adjusting. Karen, Jake and I were able to have a family life that did not have to orbit around autism. And Ben seemed happy, and just as connected to us as before. In other words, he still loved us, and he must know by now, we hoped, that he won’t be losing us.
The funny thing was, as I drove Ben back to Wisconsin, I felt like crying, and it took a while to realize why. I was going to miss him, all over again, and it was brutally unfair--to Ben as well as to us--that he must live elsewhere to get what he needs. We have to trust others to take care of him--we have to let him go. We just can’t do it ourselves any more. As Karen has often said, poor Ben--he got the short end of the stick.
A half hour into our drive, Ben said, “The letter D!” That was my cue to say, “And D is for…?” Ben countered with, “D is for dump truck!” Then he said, “D is for daddy!” I glanced in the rearview mirror, and Ben was looking right at me, a rarity, and smiling. I reached back and, patting his leg, said, “That’s right Ben! D is for daddy. And Daddy loves you so much.” He beamed, and, choking back tears, I said, “And you’ll always have Daddy.” It’s likely Ben was oblivious to the meanings I was laying on our conversation, but I swear it felt to me like we were on exactly the same page.