The Silent Son. Ken Atkins
use of the Internet and Wikipedia. Had we been able to read more about this expensive program, we might have had some doubts and possibly chosen not to give it a try.
Maybe. But we were pretty desperate. By this time, Danny was twenty months old and could not crawl, pull up, roll over, or even get up on all-fours. He made his noises, but nothing approaching words or even meaningful sounds.
Then, and now, the medical community took a fairly dim view of the Institutes’ approach to treating brain injuries and lack of development through a rigid program of repetitious activities designed to increase the brain’s functions. “We only use about 10 percent of our brain,” they kept telling us again and again. We can’t fix those parts that were damaged by an injury or just never developed, but we can stimulate other areas of the brain to take over those functions.
The training was intense, stimulating and exhausting—ten hours a day for a week. All these years later, I remember some of it. But mostly I remember the sweet, sad families from all over the world who were there to “fix” their imperfect kids. There was the middle-aged dad from Austin, Texas, whose daughter’s perfect life as cheerleader, college student, gymnast and beautiful person came to an abrupt end at the hands of a drunk driver. Now she lay paralyzed and non-communicative. “I’m going to bring her back,” he told me over afternoon coffee. “I know she’ll never be what she was, but I’m going to bring her back to me.”
There was the Hasidic Jewish couple from Israel—dad with his long beard and ringlet hair, mom with a newborn tucked under her shawl. They had come in hopes of fixing their Down’s Syndrome son. We became brief but fast friends as our van provided a private place for her to nurse her baby.
This was my first encounter with a group of special needs family sojourners. I was touched by their hope and dedication. I was moved by their stories. And, in truth, I found myself giving quiet thanks that I didn’t have their “problem” to face.
At the end of the week, the Institutes gave us a program to carry out when we returned home, taught us how to do the different tasks, sold us several hundred dollars’ worth of equipment and books, made us sign an agreement that we would diligently and honestly follow the prescribed program, and sent us on our way. In the parking lot, the emotions of the week and the enormity of the challenge ahead finally hit me. I cried uncontrollably for nearly an hour. They were the first tears I had shed since Danny was born.
As part of the program prescribed by the Institutes, a bag filled with aluminum cans was strapped to Danny’s lower back to keep him from rolling over on his bag while he learned to crawl. Within months, Danny was crawling a mile a day.
Chapter 2
THE PROGRAM
“When times are good, be happy; but when times are bad, consider: God has made the one as well as the other.”
– Ecclesiastes 7:14
I grew up on a small dairy farm, so I understood work and commitment. Neither of my parents worked off the farm. Our whole financial and social lives revolved around the daily needs of cows and crops.
I couldn’t wait to get off the farm and get out into the real world. It’s not that I didn’t enjoy farm life. I just wanted to do something that didn’t involve cow manure, drought, ornery bulls and the life-sucking monotony of milking twice a day seven days a week come hell, high water, death or Friday night football.
Little did I realize that it was precisely that training in a life of monotonous dedication and responsibility that would prepare me for my life starting at age forty. Many people experience this reality when they become parents of a newborn. The old habits and routines give way to new “child centered” activities, like diapering, non-stop laundry, soothing crying babies, cooing over sweet babies and showing said babies off to family and friends.
Often, old friendships fall by the wayside, as our running buddies have a hard time grasping why we are either unavailable or too tired to do anything. But we find ourselves making new friends at Mother’s Day Out or church events for young families or chance encounters in the pediatrician’s waiting rooms.
But old friends and dreams pale in comparison to the sweet joy of watching your child grow up right before your eyes.
Except when they don’t.
At some point between eighteen and twenty-four months, a child should have already started walking and running, and possibly going up and down stairs unassisted. He should be scribbling with a pencil and creating structures with blocks. He should be feeding himself, using a spoon and fork. He should be showing signs of being ready for toilet training. One to seven words a week should start being added to the child’s vocabulary, particularly descriptive words and phrases for the things around them, like clothes, toys and animal sounds. By the child’s second birthday, he should know at least fifty words and be able to use them in two-word statements.
This wasn’t just theoretical for us; it was in our faces everywhere we went. At the time, we were part of a church that seemed to be filled with young, fruitful couples. There were infants and toddlers everywhere, and they were all developing at normal rates, doing all the things they were supposed to be doing when they were supposed to be doing them.
Except Danny. When we started the program in earnest, Danny was twenty-one months old and he could not crawl, roll over or even hold himself up on all-fours. He had no speech and his receptive language was highly questionable. He couldn’t use any feeding utensils, and finger foods were as likely to be flung across the room as they were to end up in his mouth. In fact, everything in the house ended up in his mouth, as he seemed obsessed about tasting whatever he picked up.
Each passing month brought more worry and, I am sorry to admit, embarrassment for us, as we continued to physically carry and spoon-feed our growing toddler who didn’t toddle. Questions and concerns began to come from friends and family. They were sincere and well-intentioned, I am sure, but they were painful to face and difficult to answer.
That’s where the isolation and loneliness can begin for parents of a handicapped child. Your old friends don’t stop loving you. They just have no frame of reference to relate to your current crisis. And the new young-parent friends you have made disappear because they can’t handle your heartbreak and fears, lest those emotions spill over into their highly stressed family lives. It’s not that they don’t care or share your pain; they just can’t deal with it, and they feel guilty about that (as well as the guilt of having healthy, normal kids).
That was the world that my wife and I found ourselves in when we returned from Philadelphia with our kids, and Danny’s program, in tow. In the beginning, we were showered with love and help from our church family, old friends and our actual families. Everyone offered something, from cooking meals to prayers to cash to just being there when we needed a break.
We quickly put together a team to help with the fourteen-hour-a-day program. Most of it could be done by either my wife or me (mostly my wife, as I tried to maintain some semblance of our marketing business). The mantra for the Institutes’ program was “frequency, intensity and duration.” It involved performing a routine of sensory stimulation, breathing exercises and a full-bodied assisted exercise known as “patterning.”
Danny’s brain wasn’t physically damaged, it was just not functioning properly. The Institutes had shown us a video of a young man who had been severely injured in an accident, resulting in one half of his brain being removed. The brain has several divisions performing specific duties within the body—from controlling what you see and hear to regulating your breathing and body temperature. Through the Institutes’ program, the remaining part of this man’s brain had developed the necessary pathways to take