BEN BECOMES A BIG BROTHER……SUMMER, 1967…FIVE YEARS OLD
I remember the summer of my third pregnancy as a happy one. After I got over the initial “morning sickness” and was on my prenatal vitamins, I felt better than I had in a long time. That allowed me full freedom to truly look forward to the arrival of a new baby in our family. I don’t remember that I ever mentioned to my obstetrician that I already had a child with a problem. After all, this was 1967, in the days before amniocentesis and genetic counseling. There wasn’t any way to track down the cause or cure for autism then, and there still isn’t today. It remains a mystery waiting to be solved. About two weeks before the baby was due, I asked the doctor if he thought it would come at its allotted time (we weren’t privy as to what gender it would be back then). My sister in Kansas City was going to take care of my children, and Ben needed “special” consideration…being autistic. I shared further that I didn’t want to have to up-root him anymore than completely necessary because of this. I will never forget the look on the doctor’s face. It was like he was thinking, “Lady, are you crazy or something? Why didn’t you tell me this before now?” I hadn’t told him on purpose — there was nothing he could have done, and he would only have worried me about it. His partner had already done enough damage. I had been so sick at first that I had lost weight. When I was about six months along, I went in for a check-up and my regular doctor was out of town. I had gained three and one-half pounds in two weeks. The “stand in” doctor got all excited and told me if I kept gaining weight at that rate, I would be in danger of experiencing Toxemia, and causing damage to myself, as well as to the baby. Needless to say–he caught me off guard, and almost scared me to death. I heeded his warning so thoroughly that I only gained nine and one-half pounds my whole pregnancy, and the baby weighed 7 lb. 15 oz. at birth–so I came home from the hospital the envy of all new mothers –my regular clothes hanging in folds on me. I thought I must look great — but I’m afraid I really looked rather gaunt.
Aside from these upsets, Maureen, Ben, and I enjoyed the summer together. I took them to the wading pool, on picnics, and to play with the neighbor children often. We spent long hours outside in the evenings. We either walked, or rode bicycles and pedal toys, as we visited with neighbors along the way. Jay was completing his MBA and was at school two nights every week. He was also required to be out of town periodically and to work some very long hours, so I had the sole responsibility of the children a great deal of the time. Thankfully, he was a big help when he was home though. He often bathed Maureen and Ben and put them to bed, or baby-sat with them while I went to choir practice or did some shopping. That gave me some much needed relief. He often treated them, one at a time, to a ride around the neighborhood on our big bicycle. There was a seat attached right behind him for them to sit on. They loved that, and the special attention the ride afforded each of them produced many squeals of delight.
One particular evening, we missed Ben and could not find him anywhere. After checking the immediate neighborhood to no avail, we hurried up to the nearby park (which could only be reached by crossing a VERY busy street) and there he was, swinging to his heart’s content. He was not lost! He knew exactly where he was. To his way of reasoning, it was his family that was “discombobbled!” Living with him was exciting…we never knew what adventure each new day would bring!
Our baby was born early on the Friday morning of August 25th…two days before his due date. All worked out well, for my sister had come down to Springfield the weekend before and had taken Maureen and Ben home with her. That left me several days to rest and get ready for the birth. Baby John looked a lot like his big brother as I recall. He responded well from the start, and when they would bring him in for his feedings, I held him close to me. When we both felt SO sleepy after he finished eating, I would lay him on his tummy up on my chest, where he was safe and warm…all the while (though maybe even subconsciously) believing that the closeness and loving body contact would keep him forever from becoming “autistic.” I knew better, but I was taking no chances this time around!
BEN GETS TO GO TO KINDERGARTEN–HIS MENTORING EPISODE
Ben paid more attention to the baby than I ever expected, and Maureen seemed genuinely thrilled to have a new little brother to shower some attention on — and to receive some attention from! We had many visitors that summer…coming to see the baby, and things were pretty hectic. I was also busy trying to recuperate, and about two weeks before school was to start, I got an unexpected call from the Greenwood Laboratory School. There was room in the Kindergarten class this year for Ben. That sent us into a tailspin. There began a flurry of telephone calls…first, to the Kindergarten teacher explaining the situation with Ben, and then to the Pediatrician asking his opinion as to if it was feasible at all. Then they had to call each other and discuss it, and then call us back. Finally, it was the consensus of opinion that it was worth a try. There were enough student teachers in the classroom to balance the student/teacher ratio, and they had just completed a new building with all the latest “bells and whistles.” The Kindergarten was also equipped with brand-new up to date teaching aids. It even sported an observation room with one-way glass, so their newly hired psychologist (as well as the parents), could observe their children’s progress, or lack thereof, without being detected.
The first day of school arrived, and it felt SO good to get Ben ready to go just like any other little child. He and Maureen would be attending the same school, and riding in the same car-pool. I only hoped that those arrangements wouldn’t give her some kind of a life-long “complex.” She seemed as happy and relieved that Ben was being “accepted” as we were though. She was an unusual “big sister.” (I wasn’t to know until years later some of the things she experienced while only in the second grade; just being Ben’s older sister at that school. As an adult, she wrote a story which enlightened us called, “My Brother’s Keeper”)! As the school year progressed, the reports from Ben’s teachers included the fact that they were pleasantly surprised that he could do as much, or more than they had anticipated. He still was “aloof” though, and did not relate as the other children did. His behavior was a great “mystery” to one and all! The newly-hired school psychologist contacted us about working with Ben on a one-to-one basis himself, and we were thrilled that his services were being made available to us. He was only twenty-seven years old (my husband and I were twenty-nine at the time). He was very eager and personable, and Ben seemed to take to him right off the bat. This was more than we had even hoped for. He met with us, and discussed ways of “operant-conditioning” we might try with Ben at home. He then set about trying to take Ben on short outings…to get to know him and his “eccentricities” better. After several such trips, he decided he was going to take Ben for a full day…hoping to miraculously mold him into a “normal” child by his book-learned theories and assumptions. Don’t get me wrong…he meant well and was a fine, young man, but he STILL had it in his mind that it was Ben’s upbringing and environment that had “stymied” his development…and he was out to right the wrong that had been done. This one particular time, he came and got Ben, and I breathed a sigh of relief as they walked out the door, thinking… “A whole day to myself (although I still had two other children to care for)! It wasn’t more than two hours later that the doorbell rang, and there he stood…with Ben in hand. He said, “I couldn’t get Ben to do anything I wanted him to do…nothing was either “black or white.” I thought, “DO TELL!” THAT was the end of the one-on-one sessions with Ben. He still saw him at the school and gave the teachers advice on how to “work” with Ben, but his incentive to “re-create” him had been stifled, I’m afraid. How easy it was for him…when things didn’t go as he had it “pictured in his mind”…he was able to bring Ben back home and leave him for us to handle. It wasn’t that easy for my husband and me however. The days and years stretched far ahead in our mind’s eye…and the future pictured there didn’t look very rosy!
A CHANGE IN ENVIRONMENT–WE MOVE AGAIN
The summer of 1968, after Ben completed Kindergarten, my husband was offered a job in Lebanon, Missouri, with one of the clients of the CPA firm that had helped hire him at the college. For a young man less than thirty years of age (and the sole bread-winner for our family), it was on offer he felt he could NOT refuse. We discussed and considered all of the options for our children. Maureen was then eight years old, and ready to enter the third grade. She was a bright and capable child — often astounding us with her creativity in writing and illustrating little books on all the subjects she was interested in…birds, flowers, people, animals, behavior, and anything else that took her fancy at the moment. Ben was six, and although he had made strides in the Lab school setting — going there had not “brought him out of it” as the doctors had originally given us cause to hope for. The only educational consideration left open to him in Springfield was to repeat the previous year’s agenda and see if he blossomed more thoroughly. He was still very troubled and hard to deal with a great deal of the time — continuing to live in his own “distant” world. Paradoxically, he could sometimes be the sweetest little guy you could ever hope to meet. We never knew though, if he understood the reasoning behind rules, events, or relationships. Whatever the circumstances, he was still our precious little boy, and we did NOT want to make things more difficult for him, but to help him as much as possible. John was almost one year old now, and was a joy — relating and learning normally in every way — blessing all our lives with his disposition, natural curiosity, and perceptiveness. We all needed that “normalcy” at this point in our lives.
Whether or not to move was a hard decision. Maureen had felt so much a sense of “belonging” at the Lab school because of her Dad being employed and well-recognized at the college. How would the move affect her? She was wise beyond her years in some matters it seemed, but still only her true age emotionally, and had dealt with so much already. Would she understand at all? Ben reacted with his usual “seeming” indifference; never acknowledging that he noticed anything unusual was transpiring. Still, we knew from experience that change did bother him immensely — actually, more than most people! John was happy at that time in his life to be anywhere that we were. We wondered when it was acceptable to consider our own desires and dreams?
We decided to take the job, but to stay in our home in Springfield while Jay “scoped” it all out — commuting back and forth daily (it was a sixty mile trip each way). We did this for over a month, and had planned to do it longer, but a couple who had previously looked at our house, came to us with an offer to buy it that we could not refuse. We moved to Lebanon in the summer of 1968. It was a town of approximately 10,000 people. My intuition kept warning me with the thought, “This move can’t actually be happening!” Somehow, it took place anyhow… against my better judgment. Jay felt he had accomplished all that he had gone to the college to do, and was interested at that point in his life in a new challenge. The position and monetary reward certainly figured in it all too, but it DID seem to be a job that offered growth and new experiences in his profession.
FOR BETTER OR FOR WORSE
We rented a house there, and I set about trying to get it cleaned and fit to live in. Jay was sent out of town the first week we were there, and whenever I look back on that experience, I immediately remember the HEAT (no air-conditioning) — and the DIRT, (the previous renters had four children and two huge dogs. They had all made their presence known profusely all through the house). The dogs left fleas in the carpeting that bit John all over his legs and arms as he crawled, and the bathroom toilet tissue holder was missing because they had chewed it up! The children left crayola marks all over the walls, and they had crushed the actual crayolas on to the wooden and linoleum floors for me to try to clean off!
We then found out that the local residents resented the company where Jay went to work, and did not look favorably on its employees. Maureen’s school was NOT up to the Lab School standards, and she was the “new kid” whose Dad worked at the company all held in contempt. Ben was enrolled in the afternoon kindergarten there, but the teacher was NOT excited about working with a problem child…whether it be in learning OR behavior. Also, she did not have the extra help the teacher in Springfield had enjoyed. It was a VERY trying time…one I can only liken to a VERY bad dream! The good points were that Ben was being given a chance, and he was at least in school each day. Thankfully, Maureen had a positive attitude and was willing to give it all a try. When told we were going to move, she gathered up her flower bulbs and seeds she had purchased for planting a flower garden…put them in a basket, and declared that she was prepared to move. John continued to grow and thrive, whatever his surroundings.
Our neighbor behind us in Lebanon was kind and helpful, and even drove to Springfield with me several times when I needed to take John to a doctor who was familiar with him. Our neighbors across the street invited us for “home-made” ice-cream the first night we lived there…since they had observed us working so hard to get settled in. That was truly a refreshing pause. The whole block of neighbors actually gathered and watched Jay wash the windows of the house we rented…declaring that they had never seen them washed before. Likewise, when he mowed the lawn, it was almost as if a cheer went up from the whole neighborhood. A friend was provided for Maureen at her school whose Dad worked with Jay. Her mother turned out to be a sweet, understanding friend later on when I most needed one. A family who had lived one block away from us in Springfield had also moved to Lebanon. They had a little girl just Maureen’s age and a baby girl just a little older than John, as well as an older boy. We helped bolster each other many a time, and traded baby-sitting periodically. The sky in Lebanon was beautiful at night. Being a small town — there was not light from the city that marred the view of the heavens. The stars were big and bright — soothing to the soul to behold. On Halloween — the moon was full as we took the children “trick or treating,” and I will never forget how it all looked. The heavens seemed close enough to reach out and touch…and I was greatly in need of such solace.
It was in this setting that Ben began to further regress — and we began our descent into what seemed a “living hell” at the time. My worst fears had been confirmed in that the move DID seem to bother him, even more than it would most people (although we will NEVER know for sure). His teacher was not that familiar with autism, so she suggested that we consider the School for the Retarded there in Lebanon. We were not prepared for this, even though we knew that might be the next step…even if we had stayed in Springfield. We decided to try a pilot program we were told about. It was at a new behavior clinic for autistic children in Columbia, MO. He was to stay there for several weeks (at age 6), and be observed and worked with. We were SO torn…but had hope against hope that just “maybe” it could help him, and we were desperate by that time. There were still such great hopes for Ben. He showed periodic glimmers of extreme intelligence, and we felt there was STILL much potential waiting to be tapped. It was always as though — with his bright eyes and beautiful countenance — he was on the verge of understanding and relating. It seemed that if some little something in him would just “click,” everything would then fall into place, and he would be perfectly all right; even though his problems seemed insurmountable at the time! (Follow up with on Page section: 4. “Pilot Program at University for Ben.”)