10. My Christian Testimony Concerning Autism (Birth to 57 Years)

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.” (Remember, this was way back in 1966…54 years ago.)  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 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-nine 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.  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 forty-four years, and is now fifty-seven 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, I would 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 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, almost twenty-six, and Kelly, twenty-three. Ben has enjoyed being around them so much and seems to relish being “Uncle Ben.”  John was married for three years, but has been divorced for many years now.  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 62nd Anniversary in January, 2020.  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, fifty-four 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 59.  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!

Ben at age 50

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 now or six years.  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 has been home with us several times since he moved back, and has done GREAT!

All the Scott family at the Olive Garden Christmas Eve--2014

All the Scott family at the Olive Garden Christmas Eve–2014

When home, he 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 at times 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 is even beginning to sing 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.  I began to wonder just what Ben did understand about Jesus, so several years ago 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 little more 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 John 14:16-18, 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 Hissom, in Tulsa. Several years ago there was a court hearing, and a Judge ruled to keep it open.  We don’t know though how long that will stand. 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 upset.  In the past five years, he has had several grand-mal seizures.  He has also suffered from severe esophagus and acid-reflux 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 forty-four 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.”

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Ben Diagnosed with Covid-19, 7/23/20 By: Carole Norman Scott

We got the dreaded phone call yesterday telling us that our son, Ben, had been diagnosed with a positive Covid-19 virus test.  He lives in a large facility which has many different housing units (called cottages).  Ben’s unit houses 30 men.  All together, there are almost 500 people with all sorts of disabilities living there.  Additionally, there are almost 1,000 staff members (including day and night shifts), doctors, nurses, and office personnel.   In the last two months, over 150 clients and staff have tested positive.  Some have already recovered. No one has died.   We discovered yesterday that Ben was no exception to the Covid-19 bug.

It is so hard, because he cannot tell anyone how bad he feels, or where he hurts.  They take excellent care of his physical well-being, but with 30 men to see to, they sometimes don’t notice things that we immediately pick up on about Ben’s feelings and needs.  No one is allowed to visit at this time, so seeing to him for ourselves is now curtailed.  

We have commended Ben to the Lord’s care at all times, and especially many specific times in his life, and we will do so once again.  He (the Lord) has never let us down.  Ben is 58 years old now, and we are both 82.  We cannot do for him what we’ve always done before.  We will be able to set up a “Zoom” meeting where we can see him face to face (a WONDERFUL invention)…but even if he should have to go to the hospital, we cannot be with him.  That REALLY hurts!  I’m reminded of an old hymn, and have been singing it over and over lately.  The words go:

I must tell Jesus all of my trials, I cannot bear these burdens alone…in my distress He kindly will help me…He always loves and cares for His own.

I must tell Jesus all of my troubles…He is a kind, compassionate friend;  If I but ask Him, He will deliver, Make of my troubles quickly an end.

Tempted and tried, I need a great Savior, One who can help my burdens to bear; I must tell Jesus, I must tell Jesus, He all my cares and sorrows will share.

Chorus: I must tell Jesus! I must tell Jesus! I cannot bear my burdens alone; I must tell Jesus! I must tell Jesus! Jesus can help me, Jesus alone.

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How the Covid-19 Pandemic Affects Us Visiting Our Son, Ben

Ben working puzzle--July 1st, 2019--Conway - Copy - Copy

Ben working his new Birthday puzzle.

By: Carole Norman Scott

We usually visit Ben about every three months (since we’re both almost 82 and we live 4 hours from him).  April would be our next target date.  With this virus, and the “Shelter in place” orders, AND the prognosis that this may go on much longer than anyone expected, we don’t know when we will see him next.  We hope enough staff are able to be at his living facility to see to everyone’s needs.  Thankfully, God is aware of the situation, and we pray He will provide, as He always has in the past.  It is a very unusual thing we are dealing with though.  I have never seen anything like it in my lifetime.  Ben usually has a job he goes to everyday (shredding paper), and a classroom time each day too.  In the classroom, they do some work helping Ben to understand differing concepts. He also exercises on a stationary bicycle.  But the best part for him is that he/they can listen to music, watch movies and/or videos, or he can sit at the window and work his beloved puzzles.  He loves to watch the birds at a feeder close by as he completes them.  That is his place of relaxation…doing all the things he enjoys.  

I just talked with Ben’s Social Worker there, and she says that things are going very well , and they have had no cases of the Covid-19 yet.  They are going on pretty much as usual, and Ben is still getting to go to his classroom each day, and well as his job (it is just him and his instructor while there).  They are not allowing any visitors on the grounds though, and the clients who live there cannot go on any bus trips, or leave the premises.  SO, it will be a while before we can see him.  They have just started a “skype” program, and we haven’t tried it yet because Ben can’t really carry on a conversation, but I know he would enjoy seeing us (and we, him) a LOT!  I’ll have to look into that, and see how it works.  SO good to hear that he is well and functioning “as usual,”  I know that makes it easier for everyone.  The man in charge of Ben’s “cottage” has been there for at least 35 of Ben’s 44 years there.  He is a fine, Christian man, and we are SO thankful for him.  He knows Ben well, and I hope he’s able to continue on there, even though he’s reaching retirement age.  He has been a true blessing!

Thanks to all who have looked at my blog recently.  I hope you will come back and read many more of my writings.  You can tell by how much is here to read, that Ben’s life has been foremost on my mind quite a bit of the time.  However, our other two children had their share of attention too.  God bless you and your families, and hope this helps in any or many ways.  



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GOOD NEWS—Another Visit With Ben After All! By: Carole Norman Scott–(Read previous “Everything Changes”)



Because of Ben’s behavior episode at Christmas, we’ve had six months of wondering how and when we would ever be able to see him again.  SO, we made a change in our way of doing things, and went to his residential setting, and stayed in the Parent’s visitation apartments that the Parent’s Group built recently.  That made it possible for him to visit with us there.  It wasn’t like home, but it turned out VERY well–Praise the Lord!

The six months following Christmas had been such a sad time.  My knee was injured during the incident, and did not seem to want to get well.  The chance it might need surgery loomed over our heads for several months.  It was drained twice and had one cortisone shot that did not heal it.  I had to call Ben and tell him that I hurt my leg, and we could not travel at this time…so to be patient, and we would see him as soon as possible.  I didn’t know how much about that he would understand.  Finally, on June 28th, I was able to see the surgeon, and his opinion was that my knee DID still have fluid on it, but it appeared to have sealed itself off, and if it didn’t hurt…leave it “as is!”  That was TRULY a burden lifted!

SO, on Monday, July 1st, my husband and I ventured down to Conway, AR to see Ben.  He looked VERY happy to see us, and was his old, sweet self again (which helped with any fears we might have had).  His birthday is the 4th of July, so we gave him his birthday puzzle, and he worked on it in the apartment with us…seeming very pleased with the arrangement.  Then, we took him to Chili’s for his chicken fingers, mashed potatoes & gravy, and corn-on-the-cob dinner, and then to McDonald’s for a hot-fudge sundae with nuts on it (with which he was MOST pleased)!  (We didn’t know if we’d be able to do those things with him ever again!)

Then, it was time to take him back to his residential unit overnight…but we picked him up the next morning at 7:30 am to take him to McDonald’s for pancakes, and then to a 9:05 am showing of the movie, “Toy Story 4!”  He got popcorn there, and was in “hog heaven” (especially being in Arkansas–lol)!  Then we took him back to his residence, said our good-byes, and left for home.  I got several really good hugs from him (of his own accord).  All in all, it was a very satisfying visit, and I think perhaps showed us FOR SURE that it was time for a change in the way we did things with Ben.  My husband and I are both 81 years old now, and Ben is now 57.  None of us have the energy we once did, and a shorter visit seemed to accomplish the same things that the longer one did.  Ben probably doesn’t feel like being away from his routines for a week at a time any more than we would.  God is SO good.   HE made a way where there seemed to be no way, and we are TRULY thankful to HIM!



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Describing Ben’s Living Facility To A Friend–By: Carole Norman Scott

In April of 2001, I was describing Ben’s Living Facility to a friend who lives in St. Louis and had never seen the place I was talking about.  Here is what I had to say, and I STILL feel this way to this very day, May 31st, 2019.

You are correct in picturing the scenery on the way to Conway, Arkansas as beautiful, and it IS comforting and restful to bring them to mind.  There are mountains, lush greenery, and yes…the river winding its way all along, and very close to the highway in many instances.  There are many lakes and pine trees, and at one particular spot called “Ozark,” you find yourself on top of a mountain where you can see for about 10 miles in all directions.  I love that place.  I think that is why I enjoy the ride down to Conway so much.  If Ben has to be away from home, I am thankful that’s where it is.  It takes about the same amount of time to get to Conway as to Kansas City, and Jay drives it all in one day (4 hours each way).  That’s why I always try to visit friends along the way.  I can’t handle that long ride.

The title of the book you mentioned, “Bad Things Happen To Good People,” reminded me of an incident many years ago as I was coming home from Conway.  I had to leave Ben recovering from the flu (they can only stay home for two weeks without losing their Medicare/disability benefits).  On the way home, the mountains were so beautiful and I was mournful.  I was taking in all this beauty…the cattle grazing on the hillsides, and the absolutely peaceful setting.  I kept thinking, “God, how can such sadness be going on when it is so beautiful and serene on that hillside?”  The Lord spoke to me quietly within myself and said, “This beauty and peacefulness is the way I meant it to be for mankind…but there will be sadness until I come back again.”  I checked the Scriptures in the days following and found that to be true…Romans 5:12  (I like it out of the Living Bible).  “When Adam sinned, sin entered the entire human race. His sin spread death throughout all the world, so everything began to grow old and die, for all sinned.”  That can be followed up in Romans 8: 18-23 with more explanation that I’ll let you look up for yourself.

So, it was on a trip to Conway that I first understood why “Bad Things Happen To Good People.”  I don’t know if that is how that author explained it, but that is what I came to understand.  I love the Scripture in Revelation 21:4 that says, “God will wipe away all tears from their eyes, and there shall be no more death, nor sorrow, nor crying, nor pain.  All of that has gone forever.”  We sang that as an anthem in choir, and it is one of the most beautiful songs I’ve ever heard.  I have it on a tape of our choir singing, and I listen to it as I’m driving to and fro on my longer outings.



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Everything changes–Ben’s meltdown at Christmas! By: Carole Norman Scott


Everything changes…we have been blessed to have our fifty-six year old autistic son, Ben, be able to come home several times a year for week-long visits for 43 years.  Several other times a year, we visited him in Conway and took him out overnight to a hotel and to dinner, so we all could just enjoy being together.  FORTY-THREE YEARS!  Just think of it…from age 14 to age 56…he came home and went right into his “home” routine, and then back to Conway, and back into his Conway routine…never faltering, always happy to be here…to do whatever we did, to see relatives, and to relax  “at home”, and then to go back.  My husband and I are both 80 years old now, and don’t quite have the “resilience” we once did to keep up with it all like Ben does.  We notice though, that he is changing as he ages too.

This Christmas seemed different from the start.  I went with Jay to get Ben because we were already in Ft. Smith (which is 2 hours closer to Conway).  Ben was glad to see us, and all seemed well.  Then, on the way home, my purse got left at Clarksville, AR and when I missed it, we had to turn around and drive 10 miles back there to get it, so 20 miles was added to our trip.  (Luckily, some honest person had turned my purse in, and ALL was intact…money, credit cards, insurance cards, and driver’s license.)  Anyway, we got home safely and rested, but we heard Ben up in the night…opening and closing his chest of drawers.  He has NEVER gotten up in the night while at home, so that was unusual.  I noticed the next morning that he had changed pajamas several times that night.  We said nothing about it though, and went on to Church and Sunday school.  We had recently joined with another Sunday school class that is much bigger, and meets in a different room than before, so I could tell that didn’t quit sit well with Ben.  However, he was a trooper, and all went well.  We went out to eat on the way home, and he got his favorite…pancakes, bacon and scrambled eggs.  Then he took a nap after we got home.  All our family (Ben’s sister and brother and niece) were coming for Christmas the next day, so I had been working around that afternoon, getting ready for company, and was tired by the time he awakened.   I noticed that Ben seemed different…and that he might be having an impacted bowel and that, in turn, was affecting him in other ways.  I saw that evening that there were several outfits in his clothes hamper…jeans, t-shirts, undershirts, underpants, and even socks.  He had changed the WHOLE outfit when his jeans were accidentally lightly soiled due to his physical problems.  When I said something about that to him, he started hitting his face with his hands (not his fists)…and getting quite upset.  We knew there was always the chance for this to happen, as that was the reason he had to move away from home in the first place at age fourteen.  He had upsets that we could not physically handle then, but it had NEVER happened before at home since he had moved away. So, like his periodic seizures that we had never witnessed until recently, it was a shock to behold and it was scary, because again, like the seizures, you don’t know how it will manifest itself…will it be contained, or will it be a full-blown meltdown?  Ben is big (5’10”, 210 lbs, and I am little 5’1”, 125 lbs.).  My husband is not a match for him when he is upset, so we would not be able to combat or contain him once the sequence is started.  I left the room and was going into his closet and started to tell him that some of these clothes were not soiled, and could be worn, and then I saw him coming into the room, and he grabbed my arm as if to stop me, but he also pushed me, and I lost my balance and fell, hitting my right knee against the woodwork of the closet door.  It hurt terribly at the time, and I lay there.  I called for my husband (who was in the living room and knew nothing of the commotion).  Unfortunately, you cannot hear from one end of our house to the other, so he did not hear my call.  Ben knew that he had done something in his upset that he did NOT mean or really want to do.  When he saw me fall, he began again to hit his face with his hands.  I heard myself saying, “Ben, it’s OK…it’s OK” (not that he pushed me, but that he needed to calm down).  Then, by the Grace of God…I said, “Lay down on your bed!”  He looked relieved, and DID lie down.  I was able to get up then, and go into the living room, leaving Ben on his bed.  A few minutes later, I went back in, and he was standing, facing me as I walked in.  I stretched out my arms to hug him, and he opened his arms too, and we hugged.  Then, he pinched my shoulders with his fingers, and I quietly said, “Don’t hurt me Ben.”  He let go and we continued to hug.  He was OK from then on, and never soiled his undergarments again (and never had before).  WHO KNOWS what was going on…only God, and He hasn’t revealed it to me even yet.  Ben slept well that night (no getting up)…and I applied ice to my knee…knowing that all the company was coming the next day, and I HAD to be able to be “up and going!”  I was able to do everything I needed to do but, my leg had multiple bruises, and looked really bad.  Three weeks later, it got puffy, and today, six weeks after the incident, two doctor visits and 5 x-rays, it is still puffy, and I’m still using ice on it.  That’s SO much better though that what COULD have happened…the possibility of a broken hip, hospitalization, and weeks of therapy to be able to walk again (OR, hitting my head on a 24” wide table insert that was stored in Ben’s closet)!

All this has made us take another look at Ben’s future and our place in it.  It has been a sad turn of events because this had never happened before and may never happen again, BUT, if it DID, what would we do, and who could help us, and what would happen to Ben.  The police are not well-enough trained about autism at this point to handle a grown autistic man who is in the middle of a meltdown, and they might even take him to jail if he didn’t do exactly what they told him to.  Ben probably would not, as he doesn’t understand or perceive all the rules and regulations of society. The police don’t realize that about autism, that they are “out of control” at that particular moment, but will be OK if they are given time and reasonable restraint.  It is all SO hard to understand.  Ninety-nine percent of the time, Ben is a gentle and good-natured man.  But, when something is triggered, that can be really hard, if not impossible to handle.  Our next time to go and see Ben and take him out in Conway is in April, and a home visit will be due in July.  We are praying and seeking God’s guidance in these endeavors.  Was this episode a gentle warning that times have changed for Ben?  I’m SO glad I have kept scrapbooks of his visits home through the years, and can look at his happy face, and know that we have done ALL we could to keep him a part of our family, and to let him know that he is loved!  We will do all we can to keep that going in his life…as much as his disability allows!  God has been SO good to let us have 43 years of joyous times.  There have been many sad things in-between visits, but the time at home was “special!”  Oh Lord, have mercy on your servant, Ben!





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A “Bland” Diet for Ben!


Ben at the restaurant watching the waitresses carry the food in!

To bring you up to date on the latest medical decisions that have been made for Ben at the facility where he lives…he had an EGD to check his Esophagus for ongoing Barrett’s syndrome  (pre-cancerous condition of the esophagus) on April 20th, 2018.  The biopsy came back negative (GOOD).  We thought that was it, considering it was such good news.  Then, it was suggested at his facility that he be put on a “bland” diet, as the EGD had also shown gastritis of the stomach, and that could cause the future threat of cancer if his esophagus became inflamed.  Soooo, even though as his parents and guardians, we felt that was an extreme measure, they put the bland diet into action “cold turkey!”  What a shock to Ben’s system…whose greatest joy in life was to eat what tasted good to him (which included many things that can cause gastritis of the stomach…pizza, coke, rich foods, etc.).  They said he handled the change bravely…but when he came home for a visit in July, he looked into my eyes intently with a pained look, as though to say, “What is happening to me down there?”  We changed his birthday cake to comply with the diet (no chocolate), and again, he looked at me/us like, “This is NOT what I expected or wanted!”  It is SO hard that he not be able to enjoy the few things that make him happy, even if it IS best for him.  

The second thing he is dealing with is that his right hand is shaking profusely with a tremor when he lifts it to take a drink of water (or any liquid when taking his pills).  He was to see the Neurologist at his facility today (August 20th, 2018), but the computer system there is down, so that has been postponed.  That is of great concern to us, since he takes many meds…three different ones for seizures, plus others.  The dosages and interactions need to be checked, and quickly.  All we can do is pray–“Dear Lord, thank You that You have ALWAYS been looking out for Ben, and You will continue to…Your timing perfect.  Be with Ben…comfort and keep him always…giving him peace in his “toilsome” world.  Please soothe a mother and father’s aching heart for their loved one.  We praise & thank You most high!  



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Autism: ‘Tis Still A Puzzlement: Christmas, 2017 By: Carole Norman Scott

Santa Puzzle--2017

       On Friday, December 22nd, my husband (79) made the 4 hour drive down to Conway, AR to pick our son, Ben (55), up for Christmas, and they drove the 4 hours back in a hard rain…but got to Tulsa safely! 


       On Saturday, Ben helped me make brownies, chili, and home-made potato soup for Christmas Day…when our daughter and two granddaughters and our younger son would be here to celebrate… not only Christmas, but our up-coming 60th Anniversary (January 18th).  On Sunday morning, we attended our Church’s service (which was wonderful & unique), and then rested up that afternoon for the arrival of our family. They got here about 3:00 pm, and that evening, we went to a nice restaurant, and they treated us to a lovely dinner.  Ben was truly a perfect gentleman both places.  At the restaurant, he unrolled his silverware, and put the cloth napkin in his lap.  How did he know to do that?  They don’t really eat that “fancy” where he lives (although they do wonderfully well).  He wiped his face with the napkin when needed (of his own accord), and one could not have told that he had any autistic problems at all from his behavior or demeanor. WHAT A BLESSING!  It hasn’t always been that way.  He was calm and peaceful, and has been every day since.

 Family pic--2017-McGill's

       We have been shopping at the Mall, have eaten at the “food court” (where there were hundreds of other people eating and milling around), have walked all over the mall, looked in stores, and carried packages.  He says “nary a word,” but follows close behind me, as he has no idea where he’s (or I’m) going next.  I tell him, “You’re the best shopper in the”…and he finishes the sentence saying what’s he’s heard me say, “whole world!”

     Santa Puzzle--2017

       In the afternoons, he takes a 2-hour nap (because the meds for seizures make him sleepy)…so I can rest then too.  He loves to eat, and will eat most anything.  At the restaurant, he even ate the broccoli in his steamed vegetables (a first)!  He loves to work puzzles and just finished this 200 piece “Santa” one he got for Christmas.

       That helps to keep him occupied and happy too!  I can’t even express what a joy it is that he can still come home for visits and be a part of our family.  He loves coming, and I find that I feel “complete” when he’s here.  We deal with the separation because we have to…but deep inside there is a longing that is fulfilled in all of us with each visit.  Praise God for His Blessings!



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Our 10-24-17 Visit With Ben

We drove to Conway, AR and took Ben out overnight at a hotel.  We all went out to dinner at Chili’s and he got his favorites…chicken fingers, mashed potatoes & gravy, and corn-on-the-cob!  Then, we went to McDonald’s and got a hot-fudge sundae for dessert–Ymmm!  He had a grin on his face the whole time.  Afterwards, we went back to the hotel and watched the first game of the World Series.  He really enjoyed that, and I could see that he was truly paying attention to how they hit the ball and caught it, and was actually getting into the essence of the game.  Here are some pictures to prove that he was relishing it just as much as we were.  What a blessed time.  We were missing him so, and he, in turn, was VERY happy to see us.  At our age (my husband and I are both nearing 80)…we are so thankful to be able to drive the 4 hours there and back, and to check to see that Ben looks well and healthy.  The first picture is Ben and his dad, followed by Ben and his mom (me).  Then, Ben winking at me, and last, Ben watching the ballgame!  It was a GOOD visit–PTL!

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Another Blessed Christmas–2016!

I just want to praise God by telling that Ben was home for eight days at Christmas (December 23rd to 31st–2016), and did GREAT!  There were some changes that he negotiated with grace and calm (answered prayer).  He was in a different bed, and in a different room than usual, and didn’t seem to mind at all.  He slept well, really enjoyed the “eats” (especially the grilled cheese sandwiches and nestle’s quik). He doesn’t get to eat like that at his living unit because of cholesterol problems.  We’ve been told to let him have what he enjoys while at home though, because just a week of it won’t hurt him.  We went to a movie and shopping, he worked a 300-piece puzzle all by himself (he enjoys that accomplishment), got to see his sister, brother and niece, went out to eat, opened presents, and just generally had a good time.  What a blessing!  Lord, we can’t thank you enough!  My husband, even at age 78, drove 4 hours to get Ben, and 4 hours back home…all in one day.  They had a good time listening to music on the way.  Ben enjoys that too.  At the end of the visit, my husband made that same trip again.  What a FINE man and father he is!  I am blessed!  Here’s Ben with his finished puzzle!ben-puzzle-xmas-2016

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My Letter to a Friend Describing Ben’s Living Facility–April, 2001 By: Carole Norman Scott


The Conway Human Development Center where Ben lives…a church in the center, cottages all around.

In April of 2001, I was describing Ben’s Living Facility to a friend who lives in St. Louis and had never seen the place I was talking about.  Here is what I had to say, and I STILL feel this way to this very day, November 20th, 2016.

You are correct in picturing the scenery on the way to Conway, Arkansas as beautiful, and it IS comforting and restful to bring them to mind.  There are mountains, lush greenery, and yes…the river winding its way all along, and very close to the highway in many instances.  There are many lakes and pine trees, and at one particular spot called “Ozark,” you find yourself on top of a ridge where you can see for about 10 miles in all directions.  I love that place.  I think that is why I enjoy the ride down to Conway so much.  If Ben has to be away from home, I am thankful that’s where it is.  It takes about the same amount of time to get to Conway as to Kansas City, and Jay drives it all in one day (4 hours each way).  That’s why I always try to visit friends along the way, and stay with them overnight.  I can’t handle that long ride.

The title of the book you mentioned (Why Do Bad Things Happen to Good People) reminded me of an incident many years ago as I was coming home from Conway.  I had to leave Ben recovering from the flu (they can only stay home for two weeks without losing their Medicare/disability benefits).  On the way home, the mountains were so beautiful and I was mournful.  I was taking in all this beauty…the cattle grazing on the hills, and the absolutely peaceful setting.  I kept thinking, “God, how can such sadness be going on when it is so beautiful and serene on that hillside?”  The Lord spoke to me quietly within myself and said, “This beauty and peacefulness is the way I meant it to be for mankind…but there will be sadness until I come back again.”  I checked the Scriptures in the days following and found that to be true…Romans 5:12 (I like it out of the Living Bible) says… “When Adam sinned, sin entered the entire human race. His sin spread death throughout all the world, so everything began to grow old and die, for all sinned.” Romans 8: 18-23 goes on to explain it even more thoroughly.  You might check it out.  It makes it all so much clearer and easier to understand.

So, it was on a trip to Conway that I first understood why “Bad Things Happen To Good People.”  I don’t know if that is how that author explained it, but that is what I came to understand.  I love the Scripture in Revelation 21:4 that says, “God will wipe away all tears from their eyes, and there shall be no more death, nor sorrow, nor crying, nor pain.  All of that has gone forever.”  We sang that as an anthem in choir and it is one of the most beautiful songs I’ve ever heard.  I have it on a tape of our choir singing, and I listen to it as I’m driving to and fro on my longer outings.

The Conway Human Development Center is a very special place.  It is laid out like a village in itself and many of the people we deal with there have been working there as long as Ben has lived there…25 years (now, 41 years).  I think that speaks well for it in itself.  They know Ben well, and lovingly care for him, and I’m sure that he thinks of it as “home,” even though he certainly enjoys being with his loved ones and having a “vacation” from all the problems he lives with because of the varying disabilities involved.  It is interesting to go there…like a whole different world.  There are people that look every kind of way, but are still able to communicate fairly normally, and there are ones similar to Ben…who look normal enough, but cannot fend for themselves in this world.  I am thankful there IS such a place.  It is not perfect, but it continues to be the best that we’ve ever known of in all these years.  They are faithful to keep up with all their accreditations, and are well thought of throughout Arkansas and the surrounding area.  There are pine trees all over the grounds of the Center, and it is very pretty there for such a place as it is.  There are huge swings strong enough to hold an adult, and Ben has spent many an hour swinging to his heart’s content.  I wish you could see him as he swings.  He has a smile on his face that is “radiant” and looks as though he is in “ecstasy!” 

Ben has been treated at the Little Rock University Medical Center many times for various physical ailments (EEG’s, Esophagus problems, etc.), and we are thankful it is so close, and that he gets such “expert” care.  Before I started my Chemo, I went down to see Ben because there wasn’t time to bring him home before I was to begin the treatments.  I very plainly explained to him that we were going to do this visit differently because I was going to be taking some medicine that would make me very tired…that we would go to a hotel and stay all night…eat dinner and breakfast out, and then I would take him back.  He seemed to understand perfectly and was very happy to be taken out just overnight.  He seemed to enjoy it thoroughly.  Maybe we can do that with him again (and we have…many times).  That was a time when he “went with the flow” SO beautifully!  I think he understands a LOT more than we know.  

I hope that helps you to understand and picture Ben’s living arrangement more thoroughly.  Again, we are thankful he has a “home away from home,” and can still come and visit us, and continue to be a vital part of our family. PRAISE GOD!


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