My husband, Brian, and I walked with our son, Ken, down the pier, taking in the Cape Cod scene — the boats bobbing, the salty breeze blowing, and the gulls screaming as they looked for tidbits of food dropped by tourists. We were walking hand in hand, swinging our arms and enjoying the sunny day, when Ken saw something shiny on the shore below the pier.
Leaping Before He Looked
"Look!" he shouted. Without warning, Ken let go of my hand, ran, and jumped. He flew off the pier, his little feet air-running, no ground beneath them. He fell about 20 feet, landed in the sand, and began to dig. A large, hooked scaling knife appeared. Brian and I stood dumbfounded, as our five-year-old brandished a knife and smiled like a pirate.
Should we jump the 20 feet to reach him, or walk all the way around the pier to the sandy shore by the docks? The water near him was deep and the knife was sharp — and dirty. My feet moved as if they had a mind of their own. I ran around the pier. Other tourists stared, or tried to get out of the way as I pushed by them, yelling to my son, "Don't move." By the time I reached him, I was out of breath. I held out my hand and snapped, "Give me that."
"But look how cool it is. There are fish scales on it," said Ken.
Brian reached us a couple of minutes later and found me holding Ken by the shoulders, listing all the things that could have happened to him. The lecture already forgotten, Ken turned to his father.
"Look what I found. Isn't it cool?"
We returned to the hotel and spent the rest of the day on the shore in front of our room, where there was no danger of Ken leaping off a pier or turning people's heads if he had a meltdown.
Living Without Fear
This scene was typical for our family. Ken has attention problems (along with a few other diagnoses), and his impulsivity has gotten him into trouble. Upon witnessing Ken's escapades, friends, family, and passers-by would shake their heads at Brian and me, wondering what we were doing. The truth is, we didn't know. My husband and I were doing our best with Ken. We wanted to have fun together like a "normal" family.
Even on the home front, Ken's safety was a concern. One afternoon, when he was in sixth grade, he was playing lacrosse in the road with a friend. After an hour or so, they came in for drinks. As Ken reached into the cupboard for water glasses, his shirt rode up, revealing a large, swollen bite mark.
"What happened to your stomach?" I lifted his shirt up again. The wound showed teeth marks in the shape of a large circle.
The punctures were bloody and turning purple. Ken shrugged. "The lacrosse ball rolled into the neighbor's yard. Their pit bull was tied up in front. I didn't see him."
"We need to clean that now," I said. My heart had fallen through my stomach and dropped on the kitchen floor.
Through the years, my husband and I lost our hearts many times. Nothing could surprise us. The unexpected became the expected. After each near-disaster, we rededicated ourselves to mastering Ken's behavior. We visited doctors and therapists. We set up detailed schedules and reward systems. I won't say that none of the strategies worked, but nothing changed our son's diagnosis. He is who he is, and, 23 years later, that is true.
My husband and I learned lessons about parenting, but we also learned that there is beauty in people as they are. Children, with or without disabilities, can't be put into categories and slots.
If I could go back and do it over, I would not try so hard to make Ken's behavior fit in the world. I would help him see how the world blossomed with him in it. He's the boy who can see the treasure in the sand.
Excerpted from Easy to Love but Hard to Raise, edited by KAY MARNER and ADRIENNE EHLERT BASHISTA. Copyright 2012. DRT Press.