The Theory of... Stephen Hawking
Fostering has been a gift from God. I will not mince words there. Sure it has opened my eyes and given me sympathy but more importantly: empathy. The dictionary defines sympathy as having feelings of pity and such, whereas empathy is to understand the pain. Now it can be easy to to be critical of my thoughts here but give me a moment to take this a step further. I certainly have no idea what it is like to be abused as a child nor can I understand the pain that a toddler or infant feels when they are shaken to the point where the retinas in their eyes are detached, or when a child is stabbed with a sharp object by a drunk parent and I certainly have no clue just what it's like to have a surgery for a G Tube or a trach and I cannot fathom what it must be like to be paralyzed and in no way able to communicate but I have been a foster parent long enough to recognize fear and we all have known fear.
Kathy and I started fostering around 2005 and what started out with simple requests to foster children with relatively simple needs quickly turned very serious as we realized that each child who came to us was seemingly more medically complicated than the previous. Terminal illness, mental illness, physical deformities along with drug and alcohol addiction became all too familiar in the children we would take in. Medicines and doctor visits became regular occurrences. Specialists and experts all helped us patch these little bodies and minds as best as could be expected and one by one, each would move on to either be united with family members or on further to permanent foster homes. Sometimes you would hear success stories and sadly some were not. It's painful both in the process and in the outcome but like cops, firemen, teachers and so many others in society, you do the best you can, you fight to change the course for these children and hope for the best.
I often describe fostering like a bunch of dominoes stacked in a row. We've all seen these displays and maybe done it ourselves. You tap the first one and in perfect sequence, one falls into the next and the sequence is repeated until the last domino falls. The analogy here is that each domino represents a generation, a person, who is influenced by the generations before them, be they parents, grandparents or just people they know. Some of these influences can be good and sometimes, more than we like to admit, some of these influences are bad. If it were not for each domino being the exact and perfect shape and placement, the chain of perfect movement is disrupted. In the case of children in foster care, the influences can be from parent's use of drugs, alcohol, sex or abuse to fuel the fires of emotional imbalance in their own minds. Studies show that most foster children come from lower socioeconomic layers of society where frustrations abound and money cannot hide the hurt.
Experts have revealed in their studies that children lacking in love and proper nutrition en utero, often have slower/lesser brain development. In some cases, the child's brain may only grow to 2/3rd's the size of a normal brain. This hindrance of development also effects the child in the failure to fully develop important learning and knowledge within the brain. I'm certainly not an expert in the matter, but I do listen when Kathy and I attend foster care training seminars. We both have had eye-opening experiences that were reinforced by what we learned in classes. In particular, a common occurrence in foster babies is when the foster parents remark that "this baby is so good and never cries". That is often a bad sign. A baby that does not cry can be a sign that the baby was neglected and ignored and when subjected to neglect for a period of, say, a month, the baby will learn that its efforts to draw attention do not work and thus its little brain registers this and gives up. That learned behavior can have profound implications in future growth both socially and emotionally.
So, how does all of this tie into Stephen Hawking? Well, first let me walk you through a brief history of Stephen Hawking. At an early age, he was a brilliant young man who soared to greatness with his education and understanding of Theoretical Physics but in his final year at Oxford, he began to experience stumbling and clumsiness that was diagnosed as a motor neuron disease. We know it more commonly as Lou Gehrig's disease. A once vibrant and active young man slowly was reduced to paralysis in his wheelchair. We, of course, heard his computerized voice for decades, but throughout that time, Stephen Hawking had been unable to utter a single word. Silently, Stephen Hawking had been reduced to a near comatose existence, unable to move, speak or even express emotions and if you were to have met him, and not known his condition or history, you would likely have thought he was in some form of vegetative state and possibly question whether he even had any significant brain activity. He obviously did have an active brain as was regarded as one of the most brilliant minds in the world and the author of many highly regarded books and papers.
But think about that for a minute. Had Stephen Hawking not had the benefit of a normal childhood through teenage years, we would have no idea of his brilliance or knowledge. We would only think of him as nothing more than a wasted mind with a path of drool slowly pouring from lips of which he could barely control.
Now... and this is very important. Clear your mind and think about a young infant in a hospital. Three months premature because his birth mother tried to abort him by taking a concoction of drugs. While the drugs didn't kill him, they did cause his early birth. First with the APGAR and slowly, as milestones in his early growth were missed, doctors realized this little boy had significant problems. X-Rays, CT Scans and a host of other tests determine that his poor little brain was not only growing at a very slow pace, but the lobes of his brain had not fused and he had holes in brain that all pointed to significant brain damage. The drugs didn't kill him but left him paralyzed, near comatose and without the ability to speak or move. Whatever cognitive skills he had, he would never be able to express them and as such, was given a diagnosis by his medical experts of little mental capacity and a limited life. He was not only unable to comprehend the world around him but would never be able to learn and as such would be in a vegetative state for the rest of his life. A life that doctors believed would not last beyond his third birthday.
At first, he was placed in a foster home that treated him as a lump of flesh, only hosting him in their home to collect a paycheck from the government that was meant to enable his care. At this point, you can surmise that the story I'm telling you is 100% true. Those entrusted to watch over him, failed to do so and he was left neglected with black mold growing in his feeding apparatus and out-of-date formula somehow the only thing keeping him alive. A random checkup by a case worker discovered his neglected state and literally carried him out of the home while calling officials to investigate. Yes, the foster parents were fired as well as others responsible for his care.
The system failed him because it treated him as nothing more than a slobbering mass of flesh and bone. I hate that terminology but it must have been their mindset based on the care they provided. Another family is contacted who welcomes him in. A family experienced with medically-fragile children who see to it that his equipment is clean, his formula is up-to-date and those in care of their little patient are truly concerned for the well-being of this misunderstood and neglected infant. Months go by and hand-picked nurses, who were instructed to treat him as a normal human being, hold him, work his muscles through therapy and talk with him. They have conversations as if he is able to respond but undeterred by his lack of response, continue. Months turn to a couple of years when one nurse, who had the good sense to put our little guy in a special swing and give him subtle pushes as if swinging on a playground, experiences the first utterances of happiness. A squeakiness that sounded similar to that of a baby duck, our little guy was laughing. The slow motion of the swing excited his brain to the point where he was smiling and the sounds of laughter came through the trach in his throat. Victory and tears as we realized this little guy had enough brain matter to comprehend a fun moment.
The laughter was short-lived as we were careful not to overstimulate him and cause seizures. Everything in moderation. Months passed and with continued therapy, conversation and love, he began to react to his favorite nurses by a subtle head turn toward their direction and a smile. He was unable to speak but the smiling mouth and eyes told us all we needed to know. He recognized and appreciated those who showed him love.
Were the doctors wrong? I don't think they meant to be wrong because odds are, they would be right in giving that specific diagnosis so many times... but then again, they see these kids enter homes who only host them for the paycheck. I'm quite certain they see very little if any progress and honestly, we had no expectations either but felt it was our duty as Christians to live out the command to "love one another" despite the fact they can never return the love. Our little guy was no different. We recognized him as a challenge that might never produce results for our efforts. We never expected results but his little laughter was overwhelming for us all and solidified our belief that a soul was trapped in that body who just couldn't communicate to us. Somehow we got lucky when his little body mustered up enough to force a laugh and a smile.
Above is a treasured video of Damion on the last day in our home... just before the ambulance came to take him to his next stop, a home for children in his condition, who were considered in their final months of life. I held my phone, tears pouring down while shaking a favored toy above him. In the video, he is undergoing a treatment to help clear his lungs.
So what does Stephen Hawking and our little guy have in common? Stephen Hawking proved before he was afflicted with ALS that he had enormous mental capacity. He also had the benefit of integrating technology into his life before he slipped fully into the clutches of his disease. Our little guy never had the chance to learn how to read and write or to communicate so all he knows are the basics but he knows when people treat him with care, a soft touch and a kind face and in his own little way, communicates through a smile and a precious but rare laugh.
So here is a question for you:
"What if our little guy had equal brain capacity but never got the opportunity to learn the basics to express it?"
Sure, he's likely not going to have the ability to understand math, physics and the complexities of our world but what if he, like Stephen Hawking, is trapped in his body with little ability to communicate. We sometimes hear of patients who are confined to a comatose condition only to come out of it and tell us they heard us but it was just not time. It makes one ponder what they think about those who are incapacitated. It makes one fear that we all too often misread, misunderstand and mistreat those who are like Stephen Hawking or our little guy. It is that realization that constructed the belief of Kathy and I that a higher level of care must be given to these fragile little bodies and these precious little minds. Maybe the challenge isn't theirs... but ours.
Love one another, regardless.
On a side note, "our little guy" was used instead of his name. In foster care, we avoid using the names of our patients out of consideration for their privacy and the privacy of the bio parents. Despite their wrong-doing, we do not deal with the judicial efforts just the care of the children placed in our home. In our home though, we do use their names.
Our little guy was not the only patient where we shared this experience. Another small infant came to our home . At the age of just six months, her bio father, in a fit of rage from her crying while he was playing video games, bashed her head against what authorities thought was possible a coffee table or counter top. Her skull was crushed into many tiny pieces and her brain swelled, like severely bruised brains do, to a point where she had to be placed in a drug-induced coma. She was air-flighted to one hospital in Houston and then to another before a surgeon with the right skills was found here in Austin. Some how, this miracle-worker of a doctor, operated on her and pieced the shattered pieces of her skull back together. Her prognosis was terrible but she was alive.
We were asked to visit her in the hospital and were told there was a fair chance she could die. We accepted the challenge and with the help of a day nurse, worked diligently with our vegetative patient. She had obvious neuromuscular issues which included her sticking her tongue out, involuntarily. Because I'm a little weird and because I wanted to begin some kind of interaction, I began tapping her tongue and telling her "I got your tongue!" as a game. She would retract her tongue so we figured the tongue jut outward was involuntary but once tapped, she had at least the capacity to retract it. We loved on her, took care of her needs and six months had passed when one afternoon, our day nurse shouted down the stairs from her room to come quick. Kathy and I were frightened that our little girl had some kind of medical emergency and we raced upstairs to see our nurse smiling and huddled over our little patient. "Watch this!" she said as she waited for our tiny girl to once again jut her tongue out. "I got your tongue!" she said as she tapped the very tip of a tiny wet pink tongue and suddenly: laughter! This little girl who doctors thought might pass in our home was laughing at a simple and silly little game we had been playing for the better part of six months. Tears and awe as we realized that despite the span of six months, this little girl's brain had garnered the ability to react and laugh.
Kathy and I started fostering around 2005 and what started out with simple requests to foster children with relatively simple needs quickly turned very serious as we realized that each child who came to us was seemingly more medically complicated than the previous. Terminal illness, mental illness, physical deformities along with drug and alcohol addiction became all too familiar in the children we would take in. Medicines and doctor visits became regular occurrences. Specialists and experts all helped us patch these little bodies and minds as best as could be expected and one by one, each would move on to either be united with family members or on further to permanent foster homes. Sometimes you would hear success stories and sadly some were not. It's painful both in the process and in the outcome but like cops, firemen, teachers and so many others in society, you do the best you can, you fight to change the course for these children and hope for the best.
I often describe fostering like a bunch of dominoes stacked in a row. We've all seen these displays and maybe done it ourselves. You tap the first one and in perfect sequence, one falls into the next and the sequence is repeated until the last domino falls. The analogy here is that each domino represents a generation, a person, who is influenced by the generations before them, be they parents, grandparents or just people they know. Some of these influences can be good and sometimes, more than we like to admit, some of these influences are bad. If it were not for each domino being the exact and perfect shape and placement, the chain of perfect movement is disrupted. In the case of children in foster care, the influences can be from parent's use of drugs, alcohol, sex or abuse to fuel the fires of emotional imbalance in their own minds. Studies show that most foster children come from lower socioeconomic layers of society where frustrations abound and money cannot hide the hurt.
Experts have revealed in their studies that children lacking in love and proper nutrition en utero, often have slower/lesser brain development. In some cases, the child's brain may only grow to 2/3rd's the size of a normal brain. This hindrance of development also effects the child in the failure to fully develop important learning and knowledge within the brain. I'm certainly not an expert in the matter, but I do listen when Kathy and I attend foster care training seminars. We both have had eye-opening experiences that were reinforced by what we learned in classes. In particular, a common occurrence in foster babies is when the foster parents remark that "this baby is so good and never cries". That is often a bad sign. A baby that does not cry can be a sign that the baby was neglected and ignored and when subjected to neglect for a period of, say, a month, the baby will learn that its efforts to draw attention do not work and thus its little brain registers this and gives up. That learned behavior can have profound implications in future growth both socially and emotionally.
So, how does all of this tie into Stephen Hawking? Well, first let me walk you through a brief history of Stephen Hawking. At an early age, he was a brilliant young man who soared to greatness with his education and understanding of Theoretical Physics but in his final year at Oxford, he began to experience stumbling and clumsiness that was diagnosed as a motor neuron disease. We know it more commonly as Lou Gehrig's disease. A once vibrant and active young man slowly was reduced to paralysis in his wheelchair. We, of course, heard his computerized voice for decades, but throughout that time, Stephen Hawking had been unable to utter a single word. Silently, Stephen Hawking had been reduced to a near comatose existence, unable to move, speak or even express emotions and if you were to have met him, and not known his condition or history, you would likely have thought he was in some form of vegetative state and possibly question whether he even had any significant brain activity. He obviously did have an active brain as was regarded as one of the most brilliant minds in the world and the author of many highly regarded books and papers.
But think about that for a minute. Had Stephen Hawking not had the benefit of a normal childhood through teenage years, we would have no idea of his brilliance or knowledge. We would only think of him as nothing more than a wasted mind with a path of drool slowly pouring from lips of which he could barely control.
Now... and this is very important. Clear your mind and think about a young infant in a hospital. Three months premature because his birth mother tried to abort him by taking a concoction of drugs. While the drugs didn't kill him, they did cause his early birth. First with the APGAR and slowly, as milestones in his early growth were missed, doctors realized this little boy had significant problems. X-Rays, CT Scans and a host of other tests determine that his poor little brain was not only growing at a very slow pace, but the lobes of his brain had not fused and he had holes in brain that all pointed to significant brain damage. The drugs didn't kill him but left him paralyzed, near comatose and without the ability to speak or move. Whatever cognitive skills he had, he would never be able to express them and as such, was given a diagnosis by his medical experts of little mental capacity and a limited life. He was not only unable to comprehend the world around him but would never be able to learn and as such would be in a vegetative state for the rest of his life. A life that doctors believed would not last beyond his third birthday.
At first, he was placed in a foster home that treated him as a lump of flesh, only hosting him in their home to collect a paycheck from the government that was meant to enable his care. At this point, you can surmise that the story I'm telling you is 100% true. Those entrusted to watch over him, failed to do so and he was left neglected with black mold growing in his feeding apparatus and out-of-date formula somehow the only thing keeping him alive. A random checkup by a case worker discovered his neglected state and literally carried him out of the home while calling officials to investigate. Yes, the foster parents were fired as well as others responsible for his care.
The system failed him because it treated him as nothing more than a slobbering mass of flesh and bone. I hate that terminology but it must have been their mindset based on the care they provided. Another family is contacted who welcomes him in. A family experienced with medically-fragile children who see to it that his equipment is clean, his formula is up-to-date and those in care of their little patient are truly concerned for the well-being of this misunderstood and neglected infant. Months go by and hand-picked nurses, who were instructed to treat him as a normal human being, hold him, work his muscles through therapy and talk with him. They have conversations as if he is able to respond but undeterred by his lack of response, continue. Months turn to a couple of years when one nurse, who had the good sense to put our little guy in a special swing and give him subtle pushes as if swinging on a playground, experiences the first utterances of happiness. A squeakiness that sounded similar to that of a baby duck, our little guy was laughing. The slow motion of the swing excited his brain to the point where he was smiling and the sounds of laughter came through the trach in his throat. Victory and tears as we realized this little guy had enough brain matter to comprehend a fun moment.
The laughter was short-lived as we were careful not to overstimulate him and cause seizures. Everything in moderation. Months passed and with continued therapy, conversation and love, he began to react to his favorite nurses by a subtle head turn toward their direction and a smile. He was unable to speak but the smiling mouth and eyes told us all we needed to know. He recognized and appreciated those who showed him love.
Were the doctors wrong? I don't think they meant to be wrong because odds are, they would be right in giving that specific diagnosis so many times... but then again, they see these kids enter homes who only host them for the paycheck. I'm quite certain they see very little if any progress and honestly, we had no expectations either but felt it was our duty as Christians to live out the command to "love one another" despite the fact they can never return the love. Our little guy was no different. We recognized him as a challenge that might never produce results for our efforts. We never expected results but his little laughter was overwhelming for us all and solidified our belief that a soul was trapped in that body who just couldn't communicate to us. Somehow we got lucky when his little body mustered up enough to force a laugh and a smile.
So what does Stephen Hawking and our little guy have in common? Stephen Hawking proved before he was afflicted with ALS that he had enormous mental capacity. He also had the benefit of integrating technology into his life before he slipped fully into the clutches of his disease. Our little guy never had the chance to learn how to read and write or to communicate so all he knows are the basics but he knows when people treat him with care, a soft touch and a kind face and in his own little way, communicates through a smile and a precious but rare laugh.
So here is a question for you:
"What if our little guy had equal brain capacity but never got the opportunity to learn the basics to express it?"
Sure, he's likely not going to have the ability to understand math, physics and the complexities of our world but what if he, like Stephen Hawking, is trapped in his body with little ability to communicate. We sometimes hear of patients who are confined to a comatose condition only to come out of it and tell us they heard us but it was just not time. It makes one ponder what they think about those who are incapacitated. It makes one fear that we all too often misread, misunderstand and mistreat those who are like Stephen Hawking or our little guy. It is that realization that constructed the belief of Kathy and I that a higher level of care must be given to these fragile little bodies and these precious little minds. Maybe the challenge isn't theirs... but ours.
Love one another, regardless.
On a side note, "our little guy" was used instead of his name. In foster care, we avoid using the names of our patients out of consideration for their privacy and the privacy of the bio parents. Despite their wrong-doing, we do not deal with the judicial efforts just the care of the children placed in our home. In our home though, we do use their names.
Our little guy was not the only patient where we shared this experience. Another small infant came to our home . At the age of just six months, her bio father, in a fit of rage from her crying while he was playing video games, bashed her head against what authorities thought was possible a coffee table or counter top. Her skull was crushed into many tiny pieces and her brain swelled, like severely bruised brains do, to a point where she had to be placed in a drug-induced coma. She was air-flighted to one hospital in Houston and then to another before a surgeon with the right skills was found here in Austin. Some how, this miracle-worker of a doctor, operated on her and pieced the shattered pieces of her skull back together. Her prognosis was terrible but she was alive.
We were asked to visit her in the hospital and were told there was a fair chance she could die. We accepted the challenge and with the help of a day nurse, worked diligently with our vegetative patient. She had obvious neuromuscular issues which included her sticking her tongue out, involuntarily. Because I'm a little weird and because I wanted to begin some kind of interaction, I began tapping her tongue and telling her "I got your tongue!" as a game. She would retract her tongue so we figured the tongue jut outward was involuntary but once tapped, she had at least the capacity to retract it. We loved on her, took care of her needs and six months had passed when one afternoon, our day nurse shouted down the stairs from her room to come quick. Kathy and I were frightened that our little girl had some kind of medical emergency and we raced upstairs to see our nurse smiling and huddled over our little patient. "Watch this!" she said as she waited for our tiny girl to once again jut her tongue out. "I got your tongue!" she said as she tapped the very tip of a tiny wet pink tongue and suddenly: laughter! This little girl who doctors thought might pass in our home was laughing at a simple and silly little game we had been playing for the better part of six months. Tears and awe as we realized that despite the span of six months, this little girl's brain had garnered the ability to react and laugh.
I held off telling you the gritty details, though. She had been in the hospital several times while in our care and at one point had two shunts. A drain of sorts on both sides of her brain. A large portion of her brain had not survived the tortuous abuse at the hands of her father. The shunts were used in a very rare process where fluid is pumped into one side of her brain to help flush out the dying bits and pieces of her brain through the shunt on the other side. Watching that process will minimize you. Seeing bits of brain matter and blood flowing from a tube in her head changes your perspective on how you live. It draws the ego out of you and humbles your efforts. You find a voice inside of you that speaks simply to the needs of that child. She is doing well, today although she is no longer in our home. Due to our proximity to excellent child care in the Austin area, we are a home that deals with the major medical needs until they are healthy enough to move on to more permanent care but we are blessed with the occasional email telling us of the progress of our once-little patients.
We have fostered better than 35 children and of those, many with medical issues. One final story for you. An obvious shaken-baby situation arose where the infant was blinded. His retinas were detached and his prognosis was unknown. We hosted him for a couple of weeks while authorities worked to bring his bio father home from overseas. His mother and boyfriend were obviously in trouble and out of the picture. As we cared for our little patient, he showed the obvious signs of blindness but on one cool evening, a call came from CPS that bio Dad was on his way home to a town nearby. We were to bring our little patient, with all of his things, to meet up somewhere along I-35 as they were heading up from the airport to Northern Williamson County. I suggested the parking lot at Ikea. I arrived early and had a few minutes. I jumped out of my Nissan Xterra and hopped into the back seat where my precious cargo was sitting quietly in his car seat. The Xterra was facing South and the Sun was setting off to the West. This was before the large parking garage at Ikea was built so the warm glow of the evening sunset pored through the windows of my vehicle and cast itself on the face of my tiny cargo. I sat silently watching this little guy as he lay quietly, patiently, as if waiting to begin the next phase of his life. I felt compelled to say something so I spoke softly to him, telling him that his Daddy was waiting for him and that a kind lady would take him home to meet him. Minutes passed as the silence was only broken by his soft breathing and occasional sigh as he shifted around in his car seat and then, without provocation, he turned to face me, and although I know he couldn't see me, he smiled at me for a moment and then turned back as if to watch the rest of our sunset. Seconds later a car pulled up and professional me took over as I greeted the case worker and made the transition between cars. Regardless of what I may think or believe about his abilities to communicate, it will stay a memory in my soul forever.
I'm not the smartest man you or I know but I have learned that hope is when you ignore the facts and show love anyway.
