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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No Visits Home–My Thoughts & Feelings


MARCH 7TH, 2022

Lord, I am having feelings that no one understands but you!

My poem, “A Visit Home” described the joy Ben brought to my/our lives

But now—the visits are over forever, and I am left to cope.

There is no way to describe how I feel about it all.

I miss his sweet innocence, his pats when giving and getting hugs,

his joy at the smallest things…our shopping trips, our eating at the Mall together,

his smile and handshake to the people at Sunday School and Church,

his glowing look as the music was being sung, and his occasional joining in on a hymn.

It was as though he “came alive,” and was a person again!

Now, because of ONE “meltdown” at home at age 57, the decision

we always dreaded—HAD to be made.  He pushed me and I fell…injuring my knee.

He doesn’t realize his own strength, especially when upset.

At age 80—we cannot handle it—we couldn’t even handle it at age 38.

Then, Covid 19 came along, as well as other health issues for me.

We weren’t even able to go see him like we had planned, and the time

we did (during the pandemic), he looked so sad and forlorn!

I try, (periodically), to explain to people that I know well what all this entails.

They seem to listen, but there is not even a hug or kind word afterwards.

They go on about their business cheerfully, and it HURTS so bad Lord!

I can tell him we miss him, and I think he understands, but of course we can’t

go into the details or truly have a conversation about it because he can’t talk!

We’re also afraid that might upset him, so feel it’s better to leave well enough alone.

This is why I come to You Lord.  It helps to write it all down…to remember

the good times, no matter how much it hurts…to see it all from Your Heavenly perspective…

to be reminded that someday, in Paradise, we will be able to enjoy Ben

to the fullest…to converse with him and share a laugh together…to be affectionate,

and fully understand for the 1st time what all this Autism was about in Your plan for our lives.

I praise you Lord—even though I hurt inside, You have blessed us all the way

through this problem and its consequences.  May you watch between Ben and Jay and I

while we are absent…one from another!  Thank You for the good care he has

always gotten where he lives, and for the Christian people who love  him there.

Please let him know deep down that he is loved and missed.

This July 4th (2022), he will be 60 years old, and will have lived away from home for

46 years.  Still, it seems like only yesterday that he was a very BIG part of our lives.

It was often very troublesome and sad, but the good outweighed the bad, and he

was/is my/our son!  It hurts even yet though Lord!  Grant me/us Your peace and joy…

even in the midst of this LONG tribulation!  Thank You Lord

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BEN GOES TO HIS PROM–By: Carole Norman Scott-September 7th, 2021

This is a picture of Ben dressed up to go to his “Prom.” They said he was smiling and moving to the music! They had 4 different proms so there wouldn’t be so many at any one (because of restrictions about Covid). His Social Worker bought him new clothes especially for the event. Our daughter said, “It would be interesting to be a ‘fly on the wall’ at Ben’s prom!” We agree! I can’t get used to him with a completely bald head. Here’s how his hair used to look. Of course, that was when he was in his twenties, and before he was put on seizure meds (which don’t help the hair situation). AND, he’s 59 now. That makes a BIG difference! He looks good to me…whatever!

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After Covid restrictions, we FINALLY got to have a sweet visit with Ben—By: Carole Norman Scott—September 5, 2021–Pictures below the text!

On August 16th & 17th, 2021, we were finally able to make the four hour trip to see Ben. Covid and my health had been the deterrents. We picked him up about 1:30 pm from his living unit, and he looked great. He was well-groomed and dressed neatly. He seemed at first like he couldn’t believe his eyes though…that we were truly there (we hadn’t seen him since last October). We took him to our hotel room, and he worked a puzzle for a while. We then went shopping, and then, on to Chili’s to let him have his favorite dinner–chicken fingers, corn-on-the-cob. and mashed potatoes and gravy. The before and after of that plate of food was a sight to behold. We had little Almond Joy candy bars for dessert back in our hotel room, and then looked through his picture scrapbook I had made him. He really enjoyed that trip down “memory lane” and remembered each relative he saw. We took him back to his living unit to sleep that night. We picked him up the next morning at 7:30 am, and took him to McDonald’s for pancakes, bacon and eggs. That was a real treat for him.

We then went back to the hotel for him to finish his puzzle, and my husband took something down to the car, so was gone for a few minutes. I went over to Ben, put my arm around his shoulder, and said, ” Ben, we love you and we miss you. We are proud of you…you are a brave man. We are going to go on home now, and we’ll take you back to your living unit, and we’ll come see you again as soon as it is possible. I could tell that he was listening intently, and when I got through, he turned his head and kissed me on the cheek. THAT was profound! Such a blessing! Then, when we took him back, all the fellows he lives with were saying happily, ” Ben’s back–Ben’s back!” He walked in with a smile on his face, and when I looked in at him, he smiled and waved to me. How wonderful to see him again, and to be able to leave him looking happy and content. God is SO good. I feel for the first time that if anything were to happen to us (we’re 83 years old), that Ben would be able to cope. THAT is a BIG relief. I believe that’s what God was showing me this visit. I/we cannot do all we used to do due to health issues…and that has been a BIG concern to us. So, we are SO thankful he has a place and is well taken care of. PTL!

The long awaited feast!

The plate wiped clean!

Dad and Ben enjoying the pictures
Ben and mom looking at scrapbook.
Ben working his puzzle.

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The Telephone Call Of A Lifetime–(from my journal) By: Carole Norman Scott 6-5-21

We had a strange and wonderful thing happen this evening. When we got home from an outing, we noticed we had a message on our phone. It was from Ben’s living facility, so I called them right back. They said the reason they called was that Ben wanted to talk to us (he has lived there for 47 years and we have called him many times, but he has NEVER called us). I asked how they knew he wanted to call us, and they said that he kept taking the phone out of their hands when other clients were calling their parents. THAT IS A FIRST! Ben is almost non- verbal at the age of 59. He has had seizures that have affected his communication…so we knew he would exchange very few words. The staff fellow said he was resting in his bed, but he was not asleep, and he thought it would be good for us to talk with him. He handed Ben the phone and Ben said, “Hi!” I told him we loved and missed him and as soon as my leg got better, we would come and see him. Then, since I have always talked to him like I would anyone else, I said, “Is there anything you would like to tell me Ben?” There was silence, and the staff fellow said that Ben had handed the phone back to him. He said they were helping the clients to call home on Saturdays and Sundays, and they would put Ben’s name on the list.

All this was SO helpful and exciting because we have not gotten to visit Ben and take him anywhere for about 15 months now. We went last October to visit, and that was a VERY sad time. His living unit had been quarantined several times with Covid 19…so we couldn’t take him out to eat, and since he can’t talk with us, it was HARD. SO…him taking the initiative to get the staff to call us was a miracle indeed! Nothing is the same as it used to be. We are getting older and have more physical problems, and we get concerned about what will happen when we’re no longer able to go and actually see to his needs. God has managed it so far, and we’ll just have to trust Him to continue in the future. Anyway…what a blessing to hear Ben’s voice and for him to hear ours. Thank you Lord!

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THE REALITIES OF AUTISM–By Carole Norman Scott–5-15-21

I am sitting at my computer…feeling I must write something about Autism as it stands today in our lives, but I want to be encouraging, yet tell the truth.  So, please bear with me as I attempt to share my heart with you…very much like you were reading a page of my journal written today.

Our autistic son, Ben will be 59 on July 4, 2021.  Our journey has been full of both joys and sorrows…but with God’s help, we have lived a good life, and Ben has always continued to be a part of it.  If you’ve read any other of my “renderings” on my blog, you know that Ben lived at home until he was 13, and then his meltdowns became more than we could handle physically.  Though not even full grown yet, he was very strong when in that state of mind.  He moved away from home 46 years ago, but has come home for visits 3 and 4 times a year for a week at a time, and we have gone to visit him many times, and taken him out with us to eat and do things he enjoys.  Praise God, it has all been peaceful and pleasant on those visits, and he was a great comfort to me in all those instances.  On Christmas of 2018 (while at home) Ben got upset and had a meltdown.  Although it was not “full-blown”…it alerted us to the fact that we were now over 80 years old, and we DEFINITELY could not handle the situation at this point.  So, we had to make the sorrowful decision to not bring him home again, but to visit him at his living unit four hours away, so that we would have help there if we needed it.  That too, worked well, and we were SO thankful.  But then…Covid 19 hit, and clients and staff at Ben’s place of residence began to test positive for Covid, and were quarantined many times for over a year.  It was a necessity to help keep it from spreading…perhaps causing death to many.

Then, on a trip to Breckenridge, CO, 2019, I found out I had heart problems.  Because of the altitude, I had difficulty getting my breath and ended up in the hospital.  In the last two years , it has worsened, and many different hearts medicines have been taken.  Some have helped and some caused other problems that were very hard to deal with.  That has so far curtailed us driving to Conway, AR to see Ben.  We’ve had one Zoom meeting and got to watch him open his Christmas presents from us, but it was also VERY hard to communicate in that manner.  This Covid went on SO long that we haven’t seen him since last October (to actually be with him).  In the meltdown in 2018, I hurt my knee, and that took over six months to mend.  Then, two months ago, I ran my ankle into the open dishwasher door, and hit my inside ankle bone on my right leg really hard.  That doesn’t sound too serious, but when you’re on blood thinner, a jolt like that can cause extreme bruising and pain, and it has taken eight weeks to get over that trauma.   From the inactivity of that injury, my body began to fill with fluid, and it became harder to breath.  Then my legs began to swell…so again, that affected any trips to see Ben. 

All this to say, if any of you out there have not made arrangements for your autistic child when you and they both get older (we are now 83)…please do not put that off.  NO ONE wants to make that HARD decision about their loved one. But being realistic…it may be a necessity!  Not always because of the autistic child and their behavior, but because of the parents health and aging process. 

We have had the best of both worlds even though Ben had to move away.  He was well taken care of in every way.  It doesn’t mean that hard or bad things never happened.  The best run place in the world cannot keep unexpected outbursts from the autistic and every other kind of developmentally delayed individuals.  But, Ben had people who were patient and caring to see to his needs, excellent medical care, and he also began a growth in independence that he would not have at home.  God is good ALL the time!

I was thinking the other day…there were five “hallmarks” in our lives with Ben of sadness:

1. When WE first realized something was not quite right at age two…and had to watch him “slip away” into his own little world.

2. When he was first diagnosed at age 4, and the word “autism” was used (1966)…our world shattered.

3. A sojourn for Ben of six weeks to a facility where they were supposedly working with autistic children.  That did NOT turn out to be helpful AT ALL.  Ben was six at the time. 

4. A big meltdown at home at age thirteen that precipitated him moving away from home. Heartbreaking!

 5. A move for him in 2013 to a smaller facility two hours closer to home with only ten people in the housing unit instead of thirty.  All went VERY well for two months, and then…it all fell apart.  Ben got so upset that he ended up in a Psychiatric Hospital nearby for several days.  When calmed, he was home for several weeks (and all went well), and then he moved back to his original facility.  All of that was SO difficult, as the two months at the new place, we heard more good reports than we ever had, and then it ended abruptly.  All our hopes seemed to once again be shattered.  But, when Ben moved back to his former home, all the residents clapped and cheered when they saw him, and said, “Ben is back, Ben is back!  They wanted to help him move his things back in.  He had a BIG smile on his face and seemed glad to be there among familiar faces too.

SO, there has been much heartbreak, but many joys too!  Our sermon at church today was about David and Goliath.  Goliath was over 9 feet tall, and NO ONE was ready to take him on and fight him. But David said, the Lord saved me from the lion’s paw and from the bear’s paw and I come to fight in the name of the Lord. He was able to kill Goliath with one stone from his pouch and his sling-shot.   Our pastor ended with this question. ”Do you have a Goliath in your life that no one seems to be able to destroy or quell?” Like David, come in the name of the Lord, and count on HIM to take care of the situation.”  HE is the only one that can handle the battles we face.  He has been with us from the very beginning…opening doors and providing caring people.  God has friends EVERYWHERE!

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Article in Arkansas Democrat Gazette about how the Covid 19 has affected parent’s visits with their developmentally disabled children this past year! Carole Norman Scott

Today (March 08), the Arkansas Democrat Gazette printed this article about the Human Development Centers in Arkansas (our autistic son, Ben, lives in the Conway unit). It tells how parents are feeling about not getting to bring their developmentally challenged children home for visits all this past year because of the Covid 19. I am not allowed to copy it for you to read, but they said I could post this link, and it will get you to it if you are interested It definitely states how Jay & I feel! https://www.arkansasonline.com/news/2021/mar/08/parents-ask-visits-when/?latest

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A ZOOM MEETING WITH BEN–DEC. 18th, 2020 By: Carole Norman Scott

My husband and I had a Zoom meeting with Ben on Friday, December 18th, 2020. It was our second one, but this time we really wondered how it would go because we had gone to see him in person on October 20th for a short visit, and his living facility had been battling Covid 19 since last March. THAT was NOT a pleasant visit. We met out in the park adjoining the living units, and we ALL had on masks. We were not supposed to hug Ben or take him anywhere, and he cannot carry on a conversation. We almost didn’t go, but felt we MUST see him to determine how he was truly doing through this chaotic time. He looked SO forlorn.

He kept looking me straight in the eye…looking & looking, until I said, “Ben, what are you thinking about?” In a small voice, he said, “Chili’s!” Chili’s is where we always took him there in Conway for his favorite dinner of Chicken fingers, mashed potatoes and gravy, and corn-on-the-cob. I had to tell him that because of the Covid flu, we could not do that this time, but when things calmed down, we would do all the things we used to do…that we all enjoyed doing together so much. He seem to accept that, but still was not happy about it, and we weren’t either. It was a very tender moment in ALL our lives. My heart ached for him ever after…so I was not looking forward to the Zoom meeting and how we could spend that time with him.

I had sent him a Christmas package in the mail, and it was to arrive the day before our meeting. When the camera showed Ben, he looked good physically, and seemed glad to see us. His young, male, staff worker was pleasant and helpful. He had the box in his hands that I had sent, and it was opened at the top so Ben could open his presents in front of us (we had never even thought of that…so it was a VERY pleasant surprise). Ben proceeded to open each present without much reaction, but then found the 2 “treats” I had included…a box of Cracker Jacks, and a small package of Peanut M & M’s. Ben doesn’t do ANYTHING “half-way.” He opened the Cracker Jacks and slowly ate everyone of them…then, opened the M & M’s and ate the whole package. All of that took about 10 minutes, and by then, our time was almost up…so THAT took care of how we would fill the time! How good God is…to work that all out. He answers prayer abundantly above what we ask, think, or pray. His ways are FAR above ours, We got to see Ben and know that all was well with him and leave him looking happy! I then had a more pleasant picture of him in my mind to think on. Praise the Lord! What a wonderful invention ZOOM is!

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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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