10. My Christian Testimony Concerning Autism (Birth to 53 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…50 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 years, and is now fifty-three years old. About one year after his arrival there, they started a program for autistic children and adults, and he began to get the Behavior Modification and “one-on-one” training that he had always needed, but had never received…even in his special-school settings.  Over the years, God has provided a calm spirit for Ben so that he has been able to come home for a week to ten days…at least every three to four months.  He has also opened the way for him to obtain job-placement skills, and has surrounded him with caring people as his instructors and caregivers.  All this has helped give Ben a new enjoyment of life.  Thankfully, some of the breakthroughs so longed for in the past have finally begun to form.  He is now able to show affection more appropriately. All through the years, Iwould say, “I love you Ben”, and he would just repeat those words back to me mechanically.  Recently, he blurted out, “I love you Mom” in response.  That was a first for him, and a great joy to me after all these years! He is also able to relate to people and situations more accurately, for which we are truly thankful. He still may have a long way to go by this world’s standards, as his perceptions of situations leave a lot to be desired sometimes, but progress IS being made!

Ben at 27

The Lord uses Ben just as he is, and is still putting him with people who truly care for him. He has given me chances to share with them what He has done for us, and can do for them too.  One particular incident proves that point.  Although it happened many years ago, it is a perfect example of how the Lord has continually provided for our needs. When Ben hadn’t been at the Colony very long, I spoke at the CWC luncheon in Little Rock, AR.  I told them how the Lord had worked in my life through Ben’s problem, and when I got through, a woman came up to me and said, “My sister-in-law just went to the Colony to be the new Pediatrician there, and I’m going to tell her about you, and about Ben.”  Several months went by, and Ben came home for a visit.  I noticed that he had a terrible ingrown toenail.  We had it treated at home, but when I took him back, I took him to the clinic to let them see what had transpired.  When I told the doctor my name, she said, “Oh, are you the one, and is this him?”  From then on, whenever I called down there to check on Ben, the doctor knew who I was, and more importantly, she knew who Ben Scott  was out of the 1,000 other clients living there at that time.   She read through his file, and knew all about his particular needs.  That could only have been the Lord’s answer to the Scripture I had claimed earlier.  The fact that they recognized Ben there on a personal basis was such a comfort to me, and God knew that!  It reminded me of a Christian speaker I had heard named Major Thomas.  He said that, “God has friends everywhere.”  Sometimes we think we are the only ones that can handle a situation until we are put in a circumstance where we cannot do anything about it, and we must trust God only.  He proves to us then that He has friends everywhere to help take care of our needs, and the needs of those we love.

John & Ben (brothers rough-housing in fun).

I’m afraid I did not have four children, two years apart, as originally planned…Ben made up for two.  We did have another baby though.  A little boy named John who is five years younger than Ben.  He responded normally in every way, as did his older sister.  I can say thankfully, that for every perceptual problem that Ben suffered, Maureen and John were blessed with an extra measure of reasoning, a gift much needed to help them cope with being Ben’s siblings.  They are grown now 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-two, and Kelly, nineteen and one-half.  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 will celebrated our 58th Anniversary in January ’16.  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 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 for over a year.  They have started him on Risperidone (Risperdal), and we were told at his recent staffing meeting that the last 3 months had been calm for him.  What music THAT was to our ears.  Such a wonderful respite for Ben, for us, and for all who care for him.  He 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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My Letter to a Friend Describing Ben’s Living Facility–April, 2001 By: Carole Norman Scott


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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 made 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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Ben’s Communications at age 15–1977, By: Carole Norman Scott


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I was sorting through some “stuff” last night, and came across these communications that our autistic son, Ben, shared with us at age 15.  We didn’t think at the time that he talked very much, but in reading these comments he made, he talked a LOT compared to what he does now as an adult who has suffered Grand Mal seizures.  He now stutters when he tries to talk, so just does not try as often.  However, he is alway listening to what is being said, and is taking it all in.  It amazes me how much he knew…even as a child, but was not able to communicate it to us.  Here’s what I found:

1. My husband used to have a pilot’s license and we were able to fly Ben back and forth from home to his Living Facility.  When we got in the plane, I said, “Ben we are going to fly up in the sky…up in the clouds.”  He quickly said, “Superman!”

2. Ben came up to me and said, “Good boy in church.”  I said, “You sure are Ben.  You are a REAL good boy in church.”  He then said, “Good boy at the concert, good boy at the barber shop.”  It was as if he was trying to remind me of all the times he had stayed calm and behaved so well so that he could stay at home.  That communication was a FIRST though.  I sure wish he could have stayed home, and it made me sad that he might have been thinking that way.

3. Ben was sitting on the divan with me …looking at his Dad, and he said, “Daddy,” and I said, “Yes, good old Daddy.”  Ben then said, “Good old mommy, good old Ben, good old John (brother), good old Maureen (sister), and good old Doug (don’t know how he got in there, he was our next-door neighbor at the time who was and still is very kind to Ben).

4. When Ben went to bed, he told his dad good-night, and then said, “Hit the sack”–something only his dad says to him.

I now miss the those little things he used to say, and the sound of his voice…but he is still a mighty loving “quiet” force when he’s home, and I know that in Heaven…we’ll be able to have some WONDERFUL conversations!  Thank you Lord!

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A Recent Grand Mal Seizure 8-12-16…By: Carole Norman Scott


Ben by himself 7-4-16

Ben’s 54th Birthday 7-4-16

Ben was doing so well, but had a grand mal seizure on August 12th at his living facility. It lasted about 3 minutes, but they got him to the infirmary and kept him there for several days while they checked his seizure med levels. He liked being there…nothing expected of him, his food brought to him on a tray…while he sat in his lounge chair…living the life of Riley–Ha! We’re SO thankful that he gets such good medical care. They said about 20 nurses (?) came running when they heard Ben had the seizure. They all know him and were concerned. He was eating lunch (corndogs…his favorite) in the lunchroom when it happened, and his living unit supervisor caught him so he didn’t hit his head. He had a bite of corndog in his mouth so they did the Heimlich maneuver, but his teeth were clinched, so they couldn’t get the food out. When he came to, he chewed up the corndog and swallowed it. Thankfully, he didn’t choke on it–God is good! It was like angels were all around to help him. He seems to be back to normal now, and his meds are being adjusted.  He is on Tegretol, Keppra, & Depakote, and has been for many years.  It had been about five years since he’d had a big seizure.  He’s had three while at home on different visits, but they lasted about 30 seconds each.  Even that was VERY scary, because I/we had never witnessed him having any.  You never know if it’s going to be short or long, and you feel SO helpless to give them aid.  Thankfully, he was already sitting down when each of them happened.  We don’t ride escalators any more…always the elevator.  I realized what could happen to him and all the people below him if he had a seizure while riding one.  

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Ben’s Memory–He NEVER forgets anything!


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An amazing thing happened when Ben was home.  I was looking at his picture scrapbook with him (the same one that he used to flip through so rapidly you wondered if he was even looking at the pictures).  This time was different though.  He started at the very beginning (his birth picture)…and studied each page carefully for a long time.  I talked to him about the relatives, and asked him who they were.  These were people who were 50 years older now, or some had even gone on to be with the Lord.  Those still with us look quite different now than they did in these 1960’s pictures.  He named every one of them.  I asked him about one of his grandpas…where was he now?  Ben hesitated, then answered, “In heaven!”  Same with his other grandparents and aunt and uncle.  That impressed me, as we haven’t talked about that for several years.  I asked him what Grandpa Fred used to play with him.  He cocked his head in thought…then answered, “Iron claw!” My dad would shape his hand like a claw and say, “The iron-claw will get you.”  Then he’d tickle Ben, and Ben LOVED it.  That was when he was 2 or 3 years old.  He is now almost 54.  The “corker” though was when we came to the page of when we lived in Ft. Smith, AR, and Ben was about 9 years old.  Our next-door neighbors had a swimming pool that they let all the neighbor kids come to every afternoon if at least one parent came with them.  Ben loved going, and there were many “to-dos” about going swimming THAT VERY MINUTE when it wasn’t time to go yet.  He had trouble with the passage of time, and very little patience about it all!

Anyway, while looking at the scrapbook, we came to a picture of the pool…with him in it with some other children.  He studied it (again for a long time), and then pointed to a little head in the water and said, “Jennifer!”  Sure enough, it was the little neighbor girl who was about 5 years younger than Ben…and he hadn’t seen her for over 40 years. Now THAT was remarkable.  I wrote to her on Facebook and told her the story, and she replied, “That almost made me tear up…I didn’t know he would remember my name!”  I told her, “He never forgets ANYTHING!”  When we got to the page where he had to move away from home at age 13, he started turning the pages faster and faster…like that’s all he wanted to see.  He didn’t want to delve into the hurtful times…only remember the good.  Don’t we all feel that way sometimes?  I know I do.  I just want to take a stroll down memory lane, and nestle…comforted by some happy time in my life that brought me great joy.  Those little trips seem to help rule out any heartbreak that may have occurred as an adult.  Even with autism…Ben is no different!

Ben swimming--the little girl on the left is the one he named.

Ben swimming–the little girl on the left is the one he named.

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Good News About Ben’s Health


Just had another BIG blessing from the Lord. Ben has had Barrett’s Syndrome (a pre-cancerous condition) in his esophagus for over 10 years, and they check it by endoscope every two years. When they did the scope on March 10th, 2016, his esophagus was very inflamed, and the doctor (for the first time ever) mentioned, “If we get bad news back from the biopsy.” That was VERY scary, and we had to wait a week for the results, but the report said, NO CANCER CELLS found–PTL! That would have been SO hard, as Ben wouldn’t have understood about treatments, etc, and the Dr. said it would have been very painful. We (and many others) just kept praying, “Lord, have mercy!” AND, He DID!  I/we are SO thankful!  Only HE knew what all that would have entailed!

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Ben’s “Outburst” at age 11–Still living at home–By: Carole Norman Scott


Ben…eleven years old (and getting big and strong), and his little brother, Johnny (6) on their 1st day of school (Ben went to a special school)! February 17,1973

 

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Johnny (5), Ben (10)

I found this in reading back through my journals about Ben.  This one was dated February 17, 1973.  It reminded me of how blessed we are that at age 53, Ben can still come home for visits and do SO well…being calm, happy, gentle, and loving.  I only share it because it brought back many memories of how we have leaned on Jesus all the way, and He has never failed us.  Also, I thought that many of you out there are still dealing with this behavior daily, and I want you to know that it CAN get better.  Ben still has his “moments,” and we could not handle them when they DO happen…but he is a fine man 99 and 9/10% of the time, and for that…we are SO thankful!

From my 2/17/73 Journal: I have had another experience today.  I tried to take the kids to the movie again.  We went to see “The Courage of Lassie.”  Ben had been in a good mood all day and seemed to want to go to the show.  He got into the station wagon, waited patiently while I got ready, and stood in line with us at the movie, etc.  We got our popcorn and got through about one hour of the movie.  Then, he started the, “May I go to the bathroom”…“May I get a drink” routine…and it really is a routine!  I know because I took him to the restroom (just in case)…and let him get a drink of water too.  When we got back to our seats, he still started jerking his head and making strange noises…making it quite clear that there was not going to be any reasoning with him.  I tried to tell him, “We have to be quiet in the show,” “Watch Lassie,” etc….but he started to get more upset and pulled his coat down over his head.  A little girl about three years old was sitting next to him, and I didn’t want to take ANY chances on him hitting at her (or biting her) like he does Johnny, so I got up and left with him.  Thank God, Maureen was there with Johnny so they could stay and see the rest of the show.  When I got Ben out into the lobby, I tried to explain to him that Maureen and Johnny weren’t ready to go yet and he was ruining it for everyone, and that I was ashamed of him.  That did NO good…he jerked and fussed…and a man standing there watched him very curiously!  I went on and took him to the station-wagon, and how I wished I could have swatted him like I would have Johnny if he had acted like that…but he taught me the other night (Monday, February 12th) NOT to do that.  He threw a fit that night that I’ll NEVER forget.  It was the worst I’ve ever seen.  He hit at me and pounded on the walls…tore the covers off the bed, and yanked at his curtains.  I stood in front of his closed bedroom door (which I had closed for the other kids safety…AND mine)…and would NOT let him out until he calmed down.  Maureen said later, “Momma, we didn’t know if you were still alive or not!”  I gave Ben four teaspoons of sugar at intervals (suggested by his pediatrician…in case his sugar level had to do with his outbursts)!  I still wonder about his blood chemistry.  I think we ought to have it looked into!  (We did, and it did not show us any abnormalities).

2/1/2016–In reading this over…now that I know what I know–maybe Ben was having a type of seizure.  I had never seen him have one until he was about 45 years old.  His head jerked then, and strange noises came out of his throat.  Maybe that’s why he pulled his coat over his head.  Who will EVER know, since he can’t tell you.  But, after seeing the seizures, it is certainly a possiblility.  He had never had one before this episode, so it never crossed my mind at the time.

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A 2015 Christmas Blessing by Carole Norman Scott


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We just experienced another Christmas Blessing having Ben home with us for a week.  He looked good and healthy, and was calm, happy, and “with-it”!  We couldn’t ask for more.  We got him cleaned up and trimmed the evening my husband got him (23rd), and then, the next morning, he helped me make chili, brownies, and spice cake.  He crumbled the meat for the chili with a wooden spoon while it browned, stirred the ingredients for the desserts, and “licked the bowls” of their batter afterward…while they baked in the oven. Ymmmm!ben-brownies2015Thben-batter2015

Then, he took a good, long nap before his sister, niece, and brother came for our Christmas Eve gift exchange and dinner out.  He was alert, and happy to see every one, and we had Rotel cheese dip as they gathered.  Then we opened our gifts, and I had made everyone a picture Scrapbook of their lives. Ben enjoyed looking at his just like the others did theirs.  That pleased me greatly!  famxmas2015benS

Then, to the Olive Garden once again for our Christmas dinner. It was a blessing to have Ben with us.  L to R–Carole (Mom), Ben, granddaughter/niece to Ben–Kelly, daughter/sister to Ben–Maureen, son/brother to Ben–John & Husband/father to Ben, Jayfamily xmas--2015 Our company left on Christmas Day, and we all rested that afternoon.  The next three days here in Tulsa…it rained hard, sleeted, and even flooded in some areas, so Ben slept long periods of time…catching up on his rest.  That was good because there wasn’t much else to do.  He worked his new Christmas puzzle in-between naps.Benxmas2015puzzle

 But, on Tuesday, December 29th, the sky cleared, and we were able to get out and go to the movie (and get popcorn)…then, to the mall and get pizza!  He REALLY liked that!  On Wednesday, the 30th, my husband took him back, and although I’ve missed him a LOT, we’re SO thankful he can still be a part of our family and has a place he calls “home away from home!”  Thank You Lord!

An interesting sidelight of his visit was when we (Jay, Ben & I) went to church on the Sunday after Christmas.  It was pouring rain, so my husband let Ben and me out at the covered entrance while he went to park the car.  As we entered the long hallway on the bottom floor of the church, there was a lady in a wheelchair…shuffling her feet to make it go…while trying to carry her walker in her hands.  I asked her if she needed help, and she answered, “Yes!”  I couldn’t push her myself, so… since Ben is big and strong, I asked him to do it while I carried the walker for her.  He seemed glad to be of help, and successfully got her to the elevator, in and out (going to the 2nd floor), and clear down the long hallway to meet her companion in the room adjoining the Sanctuary.  He enjoyed the praise he got for being so helpful, and I was VERY proud of him.  Every little step like that is a BIG gain for him…even at age 53 (that only God can produce in Ben).  Hope the above pictures of what I’ve described will help you to picture it all more clearly.  Wish my hands hadn’t been full or I would have gotten one of him pushing the wheelchair.  I thank God for such a pleasant Christmas with my family!

 

 

 

 

 

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