Читать книгу The Silent Son - Ken Atkins - Страница 11

“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 over those functions that had been controlled by the missing part of his brain.

The brain is an incredibly complex and amazing organ, and there are many stories of damaged brains doing unbelievable things. It is always changing; in fact, recent research has shown that you can change the physical make-up of your brain through how you think. It is ever adaptive, creating its own workarounds to physical changes it encounters, both large and small.

There are many stories, for example, of people who lose an arm or a leg, but still feel pain in the missing limb. There are people who can access memories in their brains to the point that they can tell you exactly what happened on and what the weather was for every day going back twenty to thirty years.

In Danny’s case, the damage was diffuse—spread throughout all areas of the brain. It was like a computer with an extremely nasty virus. And the effects began to show up very early in the developmental stages. His basic life functions are not affected, so his lungs, heart and glands function normally for the most part, except during seizures. His inability to lift himself to all fours, or crawl, or even walk, weren’t because his muscles weren’t developing. It was all about his balance and being able to make the millions of tiny snap decisions and choices that we normal humans take for granted just to function in our daily lives.

Through the program, we would train his body to respond appropriately to the external stimuli that his senses were constantly sending to his brain, which would give him the information he needed to exert control over his muscles to make intentional movements with his body.

We did things like strike his arms and legs repeatedly with a hard-bristled brush, softly at first but slowly increasing the force until he would flinch in pain. Once he flinched, we would praise him and move on to another activity.

We showed him hundreds of flash cards and spoke the name of the object on the card clearly and loudly in hopes that he would begin to make that connection. We especially did that with his food, hoping to use that basic need to build the first block toward receptive language.

Because the brain uses oxygen as food and requires it to grow physically, we would limit its most basic need by putting a specialized plastic mask over Danny’s nose for a few seconds at a time, slowly increasing the length of the deprivation. The idea here was that the lungs would increase their size so they could store more oxygen for the brain to use during these disruptions.

This routine was repeated over and over and over again, all day and into the evening. Many times I found my wife and Danny asleep in our living room chair with various sensory stimuli scattered on the floor around them. They had both worked nonstop all day, only to collapse in exhaustion for a few hours rest before the next day began the process all over again.

Our team of rotating volunteers would take time out of their busy schedules to come to our home and help, mostly with the patterning, as that was the only part that required three people. The Institutes was adamant that this was the key to success for the entire program. Other parts of the routine could be skipped, but not patterning. They called it “external brain surgery.”

The concept was that the brain develops a muscle memory for particular movements. That’s why athletes shoot free throws, take endless batting practice or throw 500 footballs a day through a target. For the Institutes, developing these basic mental memories was the key to all brain development. They traced it back to the evolution of humans from crawling creatures (as babies) to stumbling toddlers to smooth walking and running adults.

All that began with the brain’s development of a cross-pattern crawl (left hand and right knee forward, followed by right hand and left knee forward). So two adults would stand on either side of Danny as he lay on his back on a table and we would move his arms and feet in that manner, with another person turning his head from side to side in rhythm with the arm and leg movements, for five consecutive minutes (building eventually to fifteen-minute sessions). Danny didn’t particularly enjoy having people forcing his arms and legs up and down, and he really hated having someone moving his head back and forth since he has an exaggerated sensitivity about anything touching his head. At times he would fight back, but at this point he was still too small to overcome three adults, although he did put up a pretty good fight late in the day when we were all exhausted.

It was boring, monotonous work, but at least it enabled us to spend hours in conversation with our team members (aka, very special friends). It made all the work bearable—at least for a while.

There were obvious improvements in Danny’s abilities that excited and energized the whole team. When we began the program, Danny couldn’t even get up on his hands and knees, much less crawl. We began his crawling program with a padded ramp that was set at such a steep angle that he barely had to move to slide down. With each trip to the bottom, we would reward him with a treat (a grape was the preferred trophy), record the amount of time it took him to make it down, lower the angle of the ramp a bit and start the process over.

In just a couple of weeks, the ramp was almost level, and Danny was using his arms and knees to propel himself from one end to the other.

The whole team rejoiced at that accomplished goal, and we redoubled our efforts, increasing the frequency and duration of the patterning and crawling activities, while letting some of the sensory issues fall by the wayside to make time in our overstuffed daily schedule.

The goal was to have Danny crawl a mile a day by the time we returned to Philadelphia for our follow-up visit in the summer. But we were progressing at breakneck speed. We would string grapes across the floor in our large home and he would hungrily crawl from treat to treat. We followed along with a rolling tape measure, recording each foot and resetting goals toward that 5,280-foot mark.

Someone bought Danny a remote-controlled car for Christmas, and we found it a great therapy tool, as he would follow the toy wherever we drove it, laughing maniacally all the way. The distances were growing by leaps and bounds every day.

It was an exciting time. We were surrounded by loving friends and family, and we were having great success at fixing our kid. There were occasional doubts and warnings offered by doctors and therapists that we should not get overly hopeful for the long-term prospects for Danny. They wanted us to be aware that Danny would probably never talk, or walk, or be anywhere near “normal,” and to prepare ourselves to accept him as he was.

We chose to ignore them and just focus on the program. We were determined and we were seeing real fruit. God was obviously on our side, so no one was going to stop us. We even cut back on his weekly visits from the speech therapist and physical therapist because we couldn’t spare the time from his program. This all seemed so logical. Danny didn’t need to learn skills; he needed to develop his brain. Our program was obviously doing that, so the answer was simple. Do it with more frequency, intensity and duration.

This was the answer, and nothing—not friends, family, finances, exhaustion, our personal dreams and needs, not even the tedium of it all—was going to stop us now. We had found the way, and we were going to pursue it come hell, high water, death or Friday night football.

And winter turned into spring.