By: Carole Norman Scott
It was recommended by the psychologist that saw Ben at age four, that we take him to a hospital setting where a team of doctors could observe him over a period of time, and see if they could come up with a more conclusive diagnosis of his problems. We discovered that a Medical Center in Kansas City, KS. had such a facility, and I wrote and called them, setting up an appointment for three months later (they could not take us any sooner than that). When the time finally approached, I called them again, to confirm the plans, and found that his name had inadvertently been removed from the waiting list, so our appointment was delayed another month or so. THAT was very upsetting. We had waited SO long already — it seemed like an eternity!
We finally made the trip in February of 1967 (Ben was four and one-half years old). I didn’t find much I had written about that episode in my diary. I believe perhaps it was too painful to capture on paper at the time. It will be told from memory, because the pictures in my mind are still so vivid. I was three months pregnant with our third child when we experienced this difficult time. I had just started wearing maternity clothes.
We arrived at my parent’s home in a suburb of Kansas City where Jay and I (and Maureen), would stay for a week so that we could see Ben every day at the hospital, and assure him that we were with him both in body and spirit. I had a splitting headache (because of the tension), and had to lay down for the remainder of that day. We were to take him first thing in the morning. I still could not believe that all of this was really happening.
The next day, we entered the hospital, and endured the perfunctory paper work and psychological interviews that were deemed necessary by some “phantom” doctor (we had yet to talk to one particularly “in charge” of Ben’s case). All of these were conducted by seemingly disinterested social workers, or young interns, who had already learned to detach themselves from the “feeling” of any given encounter with patients or their families. We were almost made to feel that Ben was the child of some distant relative — that we had been observing from afar. We were not allowed the freedom to express the fact that we had been living a nightmare — that our beloved son had slipped from our grasp, and had fallen into some deep chasm — one where we could not reach him — and he was slipping further and further away by the minute, and we knew no way to rescue him.
It was then decided that he was to be given a “brain-scan.” Dye was injected into his veins, and an x-ray was taken of his brain in hopes that any profound abnormalities could be discovered by that means. Such was not the case — thankfully! (Although, at this point, we would almost have welcomed some medical finding that could have been remedied by surgery, medication, or just tender, living care!) We did not get to be with him for that procedure either. Again, he was whisked away (like he would do so much better without us and he was so little — only four and one-half years old), and was being made to experience such “grown-up” procedures; and all alone. I only hoped that he didn’t feel as forlorn as we did.
We had been told on the phone that the Medical Center was equipped with facilities for “in-house” observation of children with behavioral problems. We were not prepared for the next step that we encountered. We were taken to the floor where Ben would be staying. It was the floor for the terminally ill children. As we were led down the hall to his room, we walked past varying traumatic situations, each representing every sadness that confronts humanity on this earth. A little boy of four, dying of leukemia lay hopeless, hooked up to every type of tube.
One room contained three black children of differing ages, all dying of kidney disease. Their mothers were with them, comforting them in their last stages of an illness that had swollen their abdomens like those of the starving children in Africa.
A little boy of approximately five years of age walked the hall, appearing to be in sheer agony. He suffered from psoriasis. I had heard a commercial on TV glibly “run on” about the “heartbreak of psoriasis” — but I was not prepared for what I saw. He looked as though he had been badly burned over 100% of his body. A tar-like mixture had been applied to his wounds — a substance still in the “testing” stage, since no known cure had yet been found.
Still another little boy of three years raced up and down the hall…like a whirlwind, never even halting to gain new strength (he had already picked up his momentum). He danced to and fro in reckless abandon, seeking what havoc he could inflict. He danced right into the room of the child with leukemia and pulled the needles out of his veins before anyone could stop him (not that anyone on the staff was paying that close of attention). The child who had been stripped of his life support had been continually attended by his mother, and she had left for only a moment’s relief and refreshment. The “whirlwind” was there for an evaluation also. He had come into the parent’s waiting-room, and in two minutes time, every toy, book, and pillow was in the floor, or lying askew in some manner. His bed had playpen mesh over the top of it to keep him in bed at night.
Ben walked through it all with his characteristic “dream-like” look in his eyes; as though he were far away, in another world. I would have to say that at this point, he seemed to be the lucky one. I almost envied him this power to seemingly “will” himself somewhere else. My husband and I understood only too well what we had stepped into. We had not been prepared for this. We knew that it would be the most difficult thing we had ever done in our lives, but no one had explained fully what all it would entail. I guess they knew full well that we would not be able to go through with it if we were told the truth ahead of time.
We were brought abruptly to “attention” by a young orderly who had come to take us to the room that Ben would be sharing with two other little boys. For the life of me, I cannot remember now what horrible malady these two suffered from. By this time, it was all running together in my mind. The orderly had some more forms for us to answer the questions to, and we complied in a “robot-like” fashion, almost as though we had been anesthetized by all the proceedings — a merciful dulling of the senses for our protection (in retrospect, I can see that we were in a state of shock). We began to realize how an autistic child might feel the need to retreat from this world, if that was indeed the actual root of the problem.
We had yet to see the doctor who would be in charge of Ben’s case. We had yet to have a kind word spoken to us by anyone other than the other parents, who looked at us with compassion in their eyes — remembering somewhere in the recesses of their minds what a shock all this had been to their systems when they first encountered it. It is amazing what the human frame can withstand…how really “tough” we can be when the situation warrants it. There was a camaraderie amongst the families that had been so called upon to suffer. They all looked out for one another. There was some small reassurance and comfort in this fact.
To digress for a moment, I would like to go back in time and bring you up to date as to how I was managing all this — physically, mentally, emotionally, and spiritually. I shared how I believed everything I had been taught in Sunday School and Church about God and Jesus, and their love for me. I had clung to this knowledge as these events with Ben began to unfold, even when they were just a mother’s fear that something was not quite right with her child.
I had prayed to God, asking for Him to heal Ben. I actually expected to wake up the next morning and to find him talking and playing like other little children — that’s how much faith I had in God, and His power to be in control of a situation. As time went by, and the healing did not occur as I had perceived it, I began to question God, and quite frankly, I did not appreciate the way He was handling this situation. Inside myself, I didn’t consider this fair at all; to Ben, to us, or to his sister, Maureen. I couldn’t understand why a loving God would allow such a thing to happen to an innocent little child, and I couldn’t think of anything “bad” enough I had done to deserve this severe a punishment. I had tried to “be good” and to please God in that manner. My prayers never seemed to be answered, and an anger and resentment began to grow within me, and it was directed toward God. I still prayed, and my religion was still a comfort, but inwardly, I felt very alone, and forsaken of God.
We continued to attend church and to be active in its ministries. I sang in the adult choir, sang solos, and attended the Women of the Church functions, where I held an office. Jay was the treasurer for the church (being a CPA) and even taught a Sunday School class for little children.
I don’t remember anyone offering to pray for Ben with us, or anyone ever coming to us and saying “Look, I understand you are going through a very rough time…could I share a message of “hope” with you?” I would tell whoever I was with a little of my problems, hoping that they had some kind of an answer for me, but no one ever came forth with any “pearls of wisdom” to fill that hurting void that I continually experienced. They meant well, they probably just didn’t see us as being in too bad a condition. After all, Jay held a responsible job — he had been called to be the Controller for the Southwest Missouri State College at the age of twenty-six. Maureen was pretty, bright, and interested…always a leader in her age group. She was doing well in her schoolwork. Ben appeared alert and handsome. Unless you were around him for a length of time, you would never have believed all that we knew to be true about him. I was active in my family’s affairs, able to function, reasonably stable, and blessed with an ability to see the good in people and to continually look for a “happy ending” to a very difficult situation.
I had begun to see another side of my personality though — that of a fearful nature. I had a fear and dread of the future and what might lie ahead. There was a sinister foreboding deep inside me that something was dreadfully wrong, and just might be for a very long time!
Emotionally, my stubborn nature and persistence got me through (or so I reasoned). I literally pulled myself up by my bootstraps and gave myself a “pep-talk.” I can even remember what I said. I told myself, “Carole, if you cave in now, Maureen won’t have a mother, Jay won’t have a wife, and Ben won’t have any family as a unit to take care of him, so shape up and keep going.” I did “keep going,” but deep inside me, there was a turmoil growing that no amount of “pep-talks” would cure. I was angry with God and His lack of caring, and I would do it on my own if it killed me. I’d show Him!
Physically, I suffered from a score of sore throats, bladder infections, headaches, and other maladies often brought on by stress and despair. I did not realize at the time either, that I was in a state of depression. No one ever even hinted that all this should affect me in any way at all, If anything, when I tried to tell someone, even the doctors, what all was going on — the stress that I experienced, and the rejection that I felt as a parent because of Ben’s seeming indifference, they just looked at me like “If you would just do your part and make him behave, you wouldn’t have the problem.”
Also, I had wanted to become pregnant again. I had always dreamed of having a family of four children. Well, Ben had sort of made up for two — and I wasn’t up to trying again after only two years, as planned. But we got up our courage when Ben was four and one-half years old, and I was blessed to find out that I was indeed expecting another child. We were very happy (although I’m sure, looking back on it, that everyone thought we had taken leave of our senses). It brought some normalcy to our family-life though. It put things in a different perspective. It took all the attention off of Ben and his problem, and it gave us HOPE!
But, the trip to the hospital with Ben caught me in the first trimester of my pregnancy, when I was vulnerable already, suffering from morning sickness and the like. This added to my mental state I’m sure, as I was in a weakened condition, and my defenses were down. This was how I ventured forth into the world of diagnoses, hospitals, doctors, and the sorrows of this life.
We finally met with the psychiatrist, who was in charge of Ben’s evaluation. He interviewed Jay and me separately, and I began to realize for the first time, that the professionals had no clue as to the cause and cure for autism. They seemed to have a “theory” though; that the parents of autistic children were cold and unfeeling people who had caused this retreat from reality in their offspring because the child felt unwanted and unloved.
He asked me about my childhood, and I honestly told him how it had been (I had loving parents, and had grown up in a stable neighborhood…going to school with some of the same people from kindergarten through high school). Years later, the doctor who had been my pediatrician when I was a child, and had later taken care of Maureen and Ben, allowed me to have Ben’s file when we moved to Springfield, MO. I finally got to read what the psychiatrist had written. All in all, it cast a fairly positive analysis (although there were the “hints” of the “mama did it” theory). He had said that I “idealized” my childhood.” That upset me for quite a few years, until I realized that I was uniquely blessed — that most of the people that end up talking to psychiatrists have a much different outlook than me on life — due to what they have encountered along life’s way. I could see that it was truly difficult for him to imagine that I could have been so fortunate.
We continued to visit Ben each day, and for all his “aloofness,” he seemed genuinely happy to see us when the elevator door opened onto his floor and he spied us starting down the hall. Likewise, although he never cried when we left, I will never forget the look on his face as the elevator door closed and we disappeared from his view. His eyes were big and sad, again as though his perception of the situation was that the elevator had swallowed us whole, and we were never to be seen again. There are some things a mother can never cast out of her mind concerning her children and their “hurts.” That look on Ben’s face is one that lingers on and on.
One day when we came, they could not locate Ben. We each went looking in the different rooms, and I finally found him in the big bathroom, all by himself…turning on the hot water faucet to the bathtub. Scalding hot water was pouring out of the spout. I don’t know what might have happened if we hadn’t come when we did. Thankfully, we arrived in the nick of time. It was all I could do to leave him there for another minute. The hope that we would find help for him was the only thing that kept us from escaping with him to the nearest exit.
Ben remained at the Medical Center facility for three weeks. Jay stayed in Kansas City for the first week. Then, we decided that Maureen should not miss any more school, and that Jay must get back to his work. It was decided that I would stay at my folks house and see to Ben (the observation of Ben and his “idiosyncrasies” was taking much longer than originally planned). They packed up and went home for a five-day stretch to complete their responsibilities, and then came back for the week-ends.
Maureen thought she was pretty important, getting to be with her Dad all alone. I’m sure she felt much like we did concerning Ben’s hospitalization. Although she missed Ben, and was sad for all he was going through, she did NOT miss the upset and turmoil that dealing with him constantly entailed. This was probably a time of respite for her. As for me, in the evenings, we tried our best to act as normal as possible. Mother and I went shopping for material for the maternity clothes she was going to make me (something I could not have done if Ben had been with me). That was relaxing and enjoyable. I would see other people with their children, and the thought would fleet through my mind, “This can’t really be happening with Ben. All seems well with these people — why is this happening to me?” I’m sure that we appeared that way too — on the surface, but we never know what is really going on with people in the privacy of their own homes. I only know that I hurt SO badly for Ben…way down deep inside.
Mother made me several maternity outfits during this time, and that picked my spirits up a little (shifting my mind toward the future, instead of my present situation). My folks were so good to me — helping out anyway they could. I’m sure it was difficult for them too, to know their beloved grandson might have BIG problems, but they put their energies into seeing that I got through it all.
As a last resort, the doctors decided to do a spinal tap on Ben to see if the spinal fluid would show any leakage from the brain. Again, they took Ben into a room just off the regular hallway (close to the room he slept in at night), and proceeded to try to stick the needle into his lower back to obtain the fluid. Again, they insisted that I wait outside the door — that Ben would do better if he couldn’t see me. Ben screamed “bloody murder,” and this went on for over a half-hour.
The black women in the room with their children across the hall kept looking over at me with eyes full of pity. I had not learned yet to stand my ground with the doctors. I was young and inexperienced enough to believe that they had all the answers, and that if I co-operated with them, they would have Ben’s best interest at heart, and would share the secret of their vast knowledge with me. So, I stood there and waited like they had said –rationalizing in my mind that I was aiding their efforts by staying out of their way. SILLY GIRL!
They were never able to obtain the spinal tap. Ben gave them a “run for their money.” They said it did NOT hurt him, but he walked all hunched over for several days afterwards, and he usually did not react to pain like other people. Who will ever know? I made up my mind then and there, that I would NEVER allow another doctor to make me go against my motherly instincts. I would stand up for what I knew in my heart was needed and necessary. I was not the dramatic, “theatrical-type” mother that exaggerated every little stub of a toe in my children. I was realistic enough to know when I was truly needed and when I was not. I would stick to that revelation, no matter what, from now on.
The day eventually came for our final meeting with and verdict from the psychiatrist. He would be able to avail us of the results of all the physical tests, and the pooled synopsis and diagnosis of the team of doctors that had “observed” Ben over this period of time. We approached the hospital with high hopes that day. Perhaps they would share with us a “special” way to handle Ben — or recommend a school he could attend that would curtail this bizarre behavior, or at least keep it from worsening. We entered the doctor’s office with baited breath.
Those three weeks of upheaval took about ten minutes to summarize. The psychiatrist related to us in a cool manner that Ben suffered from “autistic tendencies”…that he was “not as bad off as he could be”…and that we were to “take him home and treat him as normal as possible.” That was about the gist of it. Although we were so thankful to be leaving that place, and to be taking Ben out of it with us, we walked down the cement steps that day with leaden feet, much as a man walking to his execution — for there were no answers…no quick solutions. All of the hopes we had put in man and his knowledge, had been dashed in just a few short minutes. We had several lifetimes ahead of us — not only Ben’s, but ours and our other children as well. To deal with this throughout all those lifetimes seemed more than I could bear. How would I manage? How could I help Ben? I was already SO tired! But life goes on, and again, I rallied to the call within me — my family needed me, so I must get “with it,” and keep going!
It was never spoken in so many words — the doctor never actually said, “This is your fault” — but the implication was real and NOT just imagined. I, the mother, was particularly the culprit, because I was the main caregiver. Of course, I picked up on this — being sensitive and conscientious — my main goal in life being to function as a GOOD wife and mother. This was especially hard for me. When I say I was vulnerable, in this instance, it is an understatement! Now I was not only dealing with the heartbreaking circumstances that autism entailed — I was experiencing “guilt” — that I had brought about this dreaded curse — that I had failed so miserably to make my child feel welcome in my life that he had retreated into a world all his own.
No matter that Maureen did not seem to have these problems…that she was well-adjusted, and “with-it.” No matter that I had probably done admirably just to keep functioning in the face of all that had transpired. My fearful, melancholy nature came to the fore, and the “Mama did it” theory began its reign of terror on my psyche. Maybe I HAD caused it, I reasoned. Maybe it began when I did “such and such,” or perhaps it was when I neglected to do “so-forth.”
My mind played games with me, although always, in my heart of hearts, I knew that this was not the case with Ben — I knew how much I loved him — that my husband loved him — that Maureen loved him — that he had grandparents, aunts, uncles, cousins, and friends that loved and cared about him deeply too. He was wanted and planned, and welcomed into this world with great joy. All parents make some mistakes, and sometimes, there are dire circumstances that follow, but at that time autism was known to only happen once in 10,000 births, and that is rare — so why wouldn’t more children turn out to be autistic, if it could be caused from some oversight a parent might happen to make in their relationship with their children? Even the people in the concentration camps in Germany during World War II didn’t become autistic, and they were CERTAINLY treated in an inhumane manner. It all seemed just a little “far-fetched” to me. But still, my reasoning at that time was…if the doctors said so…it must be so!
I mulled it over from time to time…when I was especially tired or dismayed (not a good time to review such problems)! Instead of giving myself a pat on the back for surviving, I would rake myself over the coals for any failings I might perceive. Finally, my hard-headedness again became my salvation. I decided that I did not take credit for everything that Maureen was able to perceive and comprehend, and I would not take the blame for all that Ben was not able to formulate into “usable” data. It was fate that made Maureen capable of understanding and reasoning as she did, and it was also fate that had dealt Ben a bad hand. With that — I settled (for a time), the dilemma of the origin of Ben’s behavior, and was able to focus more on a solution to the problem.