By: Carole Norman Scott
Ben rolling his cars!
When we began to notice some changes in our two-year old son’s play and behavior, we wondered what was happening to our darling little red-haired boy. He had been born on the fourth of July, and was truly a “firecracker”… in every sense of the word! He had learned to talk, even in sentences, but we noticed regression in his communication, and in other areas too. Earlier, when his dad had said, “Hi Ben, how’s my little sunshine, he had answered, “I not a sunshine, I a cloud.” We had thought that was so smart…that he knew those concepts and their differences at that early age. The promise of high intelligence was there. At first his speech seemed to falter, then gradually his skills in carrying on a conversation were lost altogether. A bizarre speech pattern called echolalia emerged instead. As he became incapable of putting his own thoughts into words, he seemed confused, and repeated only what was said to him in a parrot-like fashion. Rather than playing, his behavior evolved into bizarre, ritualistic routines that were meaningless to all but himself. He would flip a string for hours, or roll his little cars back and forth, observing only the turning of the wheels. As though trapped in his own little world, he lost eye contact with us, and treated us almost as strangers. We felt absolutely helpless, not knowing how to stop the onslaught, or any way to minister to his needs. It was like slowly watching him die before our very eyes, and not knowing what to do about it.
Ben-3, his sister Maureen- 5
We started our rounds of doctors and clinics trying to find help for Ben when he was three. We didn’t get a diagnosis until he was four, and then we were told that he was “autistic”…a word we had never even heard before. We could certainly not fathom the far-reaching effects of such a disorder. I remember going to the library and looking it up in a book, and it was not encouraging. It described autism as “a profound, life-long malady characterized by non-communication, self-absorption and in some cases, self-destructiveness.” The children afflicted didn’t relate or perceive situations as other people do, and their learning and social skills were also greatly impaired. The doctors didn’t know what caused it or what to do about it. Their theory at the time (1966), was that “Mama did it!” They even had a name for us, and it was “refrigerator moms!” If that wasn’t bad enough, they assumed that both parents were unusually cold and unfeeling people, and the child reacted by withdrawing into himself as a protection from this world because he felt unloved. Along with that revelation came this piece of advice…“Take him home and treat him as normal as possible.”
Needless to say, I felt a complete and utter failure at my highest calling—being a good wife and mother. Being told that I could have caused something this severe in my own child was almost more than I could bear. I felt in my heart this couldn’t be true, because I knew how much I loved Ben, but I also knew that as a mother, I could think of some things I wished I had done differently. I figured that these doctors were experts in their field (some were psychiatrists), and they must know something I didn’t know, or maybe they saw something in me that I didn’t see! I began to let it “eat” on me. I was twenty-seven years old at the time.
More recently, I read a book by Erma Bombeck where she said that she had missed out on being named “Mother of the Year” by three votes, all cast by her own children! I can laugh about that now, but I couldn’t have back then. It just about did me in. My self-confidence was nearly shattered. Thankfully, my persevering nature came to the fore. I gave myself a “pep-talk” and said, “Carole, if you cave-in now, Jay won’t have a wife, Maureen won’t have a mother, and Ben won’t have any family to care for him as a unit.” I pulled myself up by bootstraps and said, “Get with it Carole, and keep going!”
I did “keep going,” but I felt real fear, frustration, and anger at God for letting this happen. It wasn’t fair to Ben, or to any of us. I asked God to take away the problem…to make Ben well. I actually expected to get up the next morning and see him talking and playing like other little children, but it didn’t happen. I couldn’t understand why God would allow a thing like this happen to an innocent little child, and I couldn’t think of anything bad enough I had done to deserve this severe a punishment.
Ben’s class at Bost school–he is on the left, front row
As time went by, Ben didn’t fit into any already established educational programs. He was so unique that no one knew how to deal with him. He was able to go to a regular pre-school and kindergarten, but he never related like the other children. At age seven, he entered the Bost School for Limited Children in Ft. Smith, AR. They were very kind to him and worked lovingly with him. He improved and related more in all areas…although the curriculum was still not geared to his specific needs, and there were no other children there like him. Unfortunately, as he progressed, he seemed even more frustrated. We began to get calls from the school saying that he was disrupting the class and didn’t fit in, and, “Would you please come get him?” He was about ten years old at the time. He would attend school on an “on-again, off-again” basis, and I began to feel a dread of each new day. I felt like life was going to be endless days of uncertainty, unhappiness, and frustration. I couldn’t make Ben do anything, and his behavior was not what I had always thought my children’s would be. It was all too much. I started hyperventilating; still doing all that was expected of me, but miserable inside myself, and constantly in a turmoil.
About this time, my next-door neighbor in Ft. Smith invited me to a Christian Women’s Club luncheon. I thought I already was a Christian! I had gone to Sunday School and Church all my life, had sung in the choir, memorized Scripture, and had lived in a Christian home. I had also tried to live my life pleasing to God. But, when I heard the speakers month after month get up and tell their stories, I came to realize that I did not have the peace and serenity that they had. They all seemed to be going through very difficult times too, but they spoke of Jesus so personally, that it made me want “what” or “who” they had…desperately. I heard myself saying quietly right where I sat, “Jesus, if I have never asked you into my life before, I am doing it right now!”
I started to the Bible Studies that the group sponsors, and it was there, in the Bible, that I found the answers to my deepest questions. I discovered that in Romans 5:6, it stated, “While we were yet sinners, Christ died for us.” I hadn’t realized that sin could be even an attitude, anything that falls short of the character of God. I knew that I had sinned by my anger and resentment towards God, as well as my fear and dread of the future. I then asked God to forgive me, and He did. I had memorized John 3:16 as a child. It says, “For God so loved the world that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life.” I found that I could now insert my own name in that Scripture…“For God so loved Carole Scott!” I had never taken it personally, and realized that He loved me that much! Then, I found that God had not caused Ben’s problems. Again, in Romans 5:12, I found that it said, “When Adam sinned, sin entered the entire human race. His sin spread death throughout all the world, and all things began to grow old and die, for all have sinned.” That jumped out at me and told me that God created this earth in perfection for us, but because of man’s sin, God’s way was violated and all things began to grow old and die. That is when sickness and death, autism, cancer, alcoholism…anything we deal with today… came into being. God did not cause it, but He does allow it sometimes in our lives to draw us to Him. He loves each one of us that much, and knows us each that well!
I found that “being good” could never have been enough to get me to heaven. In Galatians 2:19, it says, “For it was through reading the scriptures that I came to realize that I could never find God’s favor by trying, and failing, to obey the laws. I came to realize that acceptance with God comes by believing in Christ.” I also found that in II Corinthians 5:17 it says, “When someone becomes a Christian, he becomes a brand new person inside. He is not the same anymore. A new life has begun.” My sins were forgiven…my slate wiped clean!
Knowing this forgiveness and love of Jesus, and His acceptance of me just like I was/am, helped me in my relationship with Ben. I saw that I wanted him well so badly (for his sake, as well as for ours), that I was not accepting him for himself. I was then able to ask Ben to forgive me, and he just looked at me with great big eyes that said, “Mom, it’s OK.” It reminded me of God’s forgiveness, and confirmed to me the promise found in 1 John 1:9 that says, “If we confess our sins, He is faithful and just to forgive us, and to cleanse us from all unrighteousness.”
Ben at 13
I wish I could say that Ben’s problem miraculously went away when I became a Christian. I think we’re sometimes led falsely down that pathway. When Ben was thirteen, he began to have “rage-type” upsets that we could not manage at home. He was sweet-natured and calm most of the time, but the upsets were unpredictable. It became apparent that it was time to find him a “home away from home!” That was absolutely the hardest thing that I have ever had to do in my life. He could not communicate his needs. He felt pain, but did not react to it or report it, and I worried over how he would even stay alive. He had gone everywhere with us, and had played a major part in my life. I felt as though I was giving up on him, and that every hope I had ever had for his recovery was dashed! I agonized over this, and one day as I was reading my Bible, I came across a Scripture in Philippians 4:6-8 that said, “Don’t worry about anything, pray about everything. Tell God your needs and don’t forget to thank Him for His answers. If you do this, you will experience God’s peace, which is far more wonderful than the human mind can understand. Let His peace keep your thoughts and your heart quiet and at rest as you trust in Christ Jesus.” I claimed and dated this Scripture, and tried my best to put it into practice. I would be lying if I said there were not many sad times, and many tears shed when Ben moved away. It was almost as though he had died, and there was no “rite of passage” to help us through it. People were not aware of how to minister to our needs.
Again, the Lord worked all that to our good, and to Ben’s. The Bible promises in Romans 8:28– “All things work together to the good to those who love God and are the called according to His purpose.” It was Ben’s problem in the first place that brought me to the Lord, and it was his going away that changed my husband’s life too, and brought him to Christ. He had always been pretty much a “self-made” man, but this was one thing he absolutely could not control. It also got us into a Bible-teaching church because of our deep needs. What seemed for a while like an ending for Ben, really turned into a new beginning.
The “Colony” where Ben lives…a church in the center, cottages all around
The Lord provided the “just-right” place for Ben and then gave us His peace in the midst of the many overwhelming circumstances and changes involved. Ben moved to the Conway Human Development Center in Conway, AR. (lovingly referred to as The Colony), in February of 1976. He has lived there for thirty-eight years, and is now fifty-two years old. About one year after his arrival there, they started a program for autistic children and adults, and he began to get the Behavior Modification and “one-on-one” training that he had always needed, but had never received…even in his special-school settings. Over the years, God has provided a calm spirit for Ben so that he has been able to come home for a week to ten days…at least every three to four months. He has also opened the way for him to obtain job-placement skills, and has surrounded him with caring people as his instructors and caregivers. All this has helped give Ben a new enjoyment of life. Thankfully, some of the breakthroughs so longed for in the past have finally begun to form. He is now able to show affection more appropriately. All through the years, Iwould say, “I love you Ben”, and he would just repeat those words back to me mechanically. Recently, he blurted out, “I love you Mom” in response. That was a first for him, and a great joy to me after all these years! He is also able to relate to people and situations more accurately, for which we are truly thankful. He still may have a long way to go by this world’s standards, as his perceptions of situations leave a lot to be desired sometimes, but progress IS being made!
Ben at 27
The Lord uses Ben just as he is, and is still putting him with people who truly care for him. He has given me chances to share with them what He has done for us, and can do for them too. One particular incident proves that point. Although it happened many years ago, it is a perfect example of how the Lord has continually provided for our needs. When Ben hadn’t been at the Colony very long, I spoke at the CWC luncheon in Little Rock, AR. I told them how the Lord had worked in my life through Ben’s problem, and when I got through, a woman came up to me and said, “My sister-in-law just went to the Colony to be the new Pediatrician there, and I’m going to tell her about you, and about Ben.” Several months went by, and Ben came home for a visit. I noticed that he had a terrible ingrown toenail. We had it treated at home, but when I took him back, I took him to the clinic to let them see what had transpired. When I told the doctor my name, she said, “Oh, are you the one, and is this him?” From then on, whenever I called down there to check on Ben, the doctor knew who I was, and more importantly, she knew who Ben Scott was out of the 1,000 other clients living there at that time. She read through his file, and knew all about his particular needs. That could only have been the Lord’s answer to the Scripture I had claimed earlier. The fact that they recognized Ben there on a personal basis was such a comfort to me, and God knew that! It reminded me of a Christian speaker I had heard named Major Thomas. He said that, “God has friends everywhere.” Sometimes we think we are the only ones that can handle a situation until we are put in a circumstance where we cannot do anything about it, and we must trust God only. He proves to us then that He has friends everywhere to help take care of our needs, and the needs of those we love.
John & Ben (brothers rough-housing in fun).
I’m afraid I did not have four children, two years apart, as originally planned…Ben made up for two. We did have another baby though. A little boy named John who is five years younger than Ben. He responded normally in every way, as did his older sister. I can say thankfully, that for every perceptual problem that Ben suffered, Maureen and John were blessed with an extra measure of reasoning, a gift much needed to help them cope with being Ben’s siblings. They are grown now, middle aged, and on their own. They are both CPA’s like their dad. They are also Christians, and although their lives have not been easy, they have been able to cope and maintain a sense of humor, and for that I am truly grateful. Maureen is now divorced after twenty-three years of marriage. She has two girls who are a joy to us—Shannon, twenty, and Kelly, eighteen. Ben enjoys being around them so much and seems to relish being “Uncle Ben.” John was married for three years, but has been divorced for nineteen years. I don’t understand why things happen as they do, but have found myself claiming some of the same Bible promises for them that I do for Ben.
My husband and I celebrated our 57th Anniversary in January, 2015. I am so thankful he is still with me, because I have come to realize that many men cannot take the burden of having a handicapped child, and don’t stay around for “the duration.” (In fact, many fathers of “normal” children don’t for that matter!) I love and appreciate him more every day.
Today, forty-eight years after Ben’s first diagnosis, the professionals no longer blame “Mama,” but now say that autism is caused by a chemical imbalance, a neurological impairment to the brain, or a genetic disorder. There is still no known cause or cure, and much research is being done. More and more children are being diagnosed as autistic. In 1966, the statistics showed that 1 in 10,000 children were autistic. A recent article quoted the number as 1 in 69. People are now more aware of the problem…through movies and television shows that try hard to depict the affliction accurately. I am grateful that I did not have a nervous breakdown all those years ago over the doctor’s theories, but kept persevering until God could show me that “His strength shows up best in my weakness.” I am thankful that He knew all my family, and put Ben with us for a reason—for his benefit, as well as for ours!
We still must trust God daily in regard to Ben, as he is still VERY much a part of our lives. We pray for a calm spirit for him, as his upsets still DO occur periodically. In the past few years, they have been reported to happen at his living facility with great intensity and no warning. THAT is of GREAT concern. So, in 2013, we visited a smaller facility in Springdale, AR that housed only 10 people instead of the 30 that Ben had been living with. It was quieter and more home-like. With the encouragement of the staff at the CHDC, we moved Ben. All felt it was his chance to live a more normal and peaceful life. It all went GREAT for 2 months. We heard the most glowing reports we’d ever heard, and then the upsets started again, and escalated until it was necessary to move him back to his former living facility. There was one major problem. It was now necessary to go through a committee to get him placed back where he had lived for 38 years (as there are other HDC’s in Arkansas too). We had applied in November of 2013, but had heard nothing all through December, and it was crucial that something be done. I wrote a letter to the committee about how important it was for Ben to be back with the people who knew him well and loved him, but before I sent it, I put it on Facebook for my friends to be praying about it. A young woman who had been our neighbor in Ft. Smith as a child and was about Ben’s age saw my letter and contacted me. I was “friends” with her mother on Facebook. I had not seen or heard from the daughter for almost 40 years though. She just “happened” to work for an Arkansas Congressman in Ben’s district. She asked if we would like her to send my letter to the committee and to the DDS Commissioner for Arkansas on the Congressman’s letterhead. Of course we consented. It was only a week later that the committee had their meeting and we heard from them that Ben was to be placed back at the Conway Human Development Center, and not only that…but in the very same living unit…and in his very same private room. Again, God has friends EVERYWHERE and is with us every step of the way! Ben moved back in January of 2014, and has been there for over a year. They have started him on Risperidone (Risperdal), and we were told at his recent staffing meeting that the last 3 months had been calm for him. What music THAT was to our ears. Such a wonderful respite for Ben, for us, and for all who care for him. He was home with us for Christmas 2014, and did GREAT!
When home, Ben has been able to go shopping with me, visit friends, help me at the grocery store, and is my “antiquing” buddy. He never complains or says, “When are we going home?” I think he would shop ’till he dropped! He helps me sort and do the laundry, puts the dishes away out of the dishwasher, and runs the vacuum cleaner. When we go to Kansas City to visit relatives, he helps me unpack when we get home. He hangs up all the clothes, put all the toiletries away, and makes sure everything is in its rightful place. He is sometimes able to generalize information learned in specific categories to other areas of his life, and for him—compared to how he used to be, that is a major breakthrough. Most important to me, he loves to go to church with us and even sings some of the hymns that we didn’t even know he knew. Periodically, he may even say something profound of a spiritual nature of his own free will. When Ben was younger, I wondered just what he DID understand about Jesus, so I ask him, “Ben, what did Jesus do for us?” I didn’t know what to expect in reply. He looked me right in the eye, but said nothing. I started the sentence for him (because he can sometimes finish it or insert the appropriate word). I said, “Ben, Jesus —-.” He haltingly said, “died.” I said, “on the —–.” He added, “cross.” I said, “For our —-.” He blurted out “SINS!” You can imagine my delight! I feel that Ben does know Jesus personally and understands in his own way what He did for us on the cross. I feel of one Spirit with him. It made me think long and hard on how simple the message really is. It also made me realize that although he may be limited in the mental, emotional, and perceptual areas of his life…in the spiritual realm, he is whole and healed. In the whole scope of this life, that is really the most important issue. I am thankful God chose to heal him first in that manner.
Ben about said it all when he said, “Jesus died on the cross for our sins”, but there IS a littlemore to it. He also was buried, arose from the dead, ascended into heaven, and sits at the right hand of God the Father. And thankfully, He’s coming back! He promised us in the book of John, that when He went to be with the Father, He would send us another comforter. He would not leave us like orphans in this storm of life. That comforter is the Holy Spirit that comes to live in us when we ask Jesus into our hearts. I am so thankful for this provision because the problems with Ben have been ongoing. It would be easy at times to go back to my old pattern of fear and dread of the future if I didn’t know the presence of that comforter personally. There is talk periodically of closing the Colony like they did most of the facilities in Oklahoma. We still get calls from time to time that report bad news. Several years ago, Ben broke his arm in three places while in the midst of an meltdown. In the past ten years, he has had several grand mal seizures. He has also suffered from severe esophagus and acid-reflux problems, and takes many medicines to counteract these problems
In July of 1997, I was diagnosed with Non-Hodgkin’s lymphoma and underwent six months of oral chemo-therapy. In March of 1999, it reared its ugly head again and showed up in my stomach and abdominal cavity. I then wrestled with the heavy-duty, intravenous chemo, lost my hair, and dealt with all its other side-effects. In 2003, the largest tumor ever appeared, and I went through that whole chemo procedure again (again losing my hair). Then, in 2004, the doctors recommended a stem-cell transplant, and attempted it twice, but my body would not produce the baby stem-cells needed for a successful outcome. That plan had to be aborted, so it was “totally” in God’s hands. My testimony in a “nutshell” is: “Here I still am!” I tell you this to remind you that nobody ever knows what tomorrow will hold, so if you hear a message about Jesus, please take it seriously, and ponder it long and hard. Jesus Himself said in John 16:33, “Here on earth you will have many trials and sorrows,” but then He ended that thought with this wonderful promise, “But cheer up, for I have overcome the world!”
It dawned on me recently how wonderfully God has provided a way for us to “live happily ever after.” It is not a fairy tale. It is the truth, straight from the Word of God. That is the abundant life right here on earth, with the Holy Spirit living in us right now, and the promise of eternal life when we go to be with Him when we die! We don’t have to wait until we stand before God…we can know right here and now. In John 5:24 Jesus says, “He that hears my words and believes on Him that sent me, has eternal life and shall not pass into condemnation, but has already passed from death unto life.”
When I pondered just what to share in my testimony, I found it difficult to “boil” forty-eight years down into just a few words or pages. I decided that the most important issue to leave with you is… JESUS DOES MAKE THE DIFFERENCE! This is NOT about Autism or Lymphoma, but about JESUS! He has given me a peace and serenity in the midst of all the trials, and I don’t have to go on my own perseverance any more. You can have all of that today too, if you will receive Christ as your Savior and Lord.
I want to leave you with one last Scripture from Romans 10:8-10 that I think “says it all!” “For the salvation that comes from trusting Christ is already within easy reach of each of us; in fact, it is as near as our own hearts and mouths. For if you tell others with your own mouth that Jesus Christ is your Lord, and believe in your own heart that God has raised him from the dead, you will be saved. For it is by believing in his heart that a man becomes right with God; and with his mouth he tells others of his faith, confirming his salvation.”
I am going to pray a prayer concerning those who read this blog…very much like the one I prayed thirty-nine years ago. If you feel led, you can pray it along with me as you read it. Just repeat it, quietly within your heart, and receive Jesus into your life right now:
“Dear Lord, I understand now that I am a sinner, and that You sent Your Son Jesus to die on the cross for my sins. I ask You to forgive me. Jesus, I now ask You to come into my heart and my very being, and take complete control of my life. I thank You that I now know that I have eternal life through You, and that Your Holy Spirit now lives in me to teach, convict, and comfort me. Thank You Jesus.”