Migraines The Culprit For Behavior?


Ben while working a puzzle!

Ben while working a puzzle!

The doctor at Ben’s living unit ordered a CT-scan of Ben’s head and sinuses because he acts like he’s suffering from recurring headaches (he can’t tell them for sure…just puts his hand to his head when asked where he hurts). The scan was clear, but they’re going to try giving him Maxalt (pill for migraines) when he acts like he’s hurting. The clue this time was that he came out of his room and threw a shoe at someone. Not a good scene…so they’re trying this. Wouldn’t it be something if his outbursts all these years were from recurring migraines? I don’t know why I never thought of that. I used to have them so bad I thought my eye was going to fall out of my head, and was sick to my stomach. I guess we’ll not know until we try this. I hate for him to have to take yet ANOTHER medication, but it’s worth a try. I have to talk with the doctor Monday to make sure they checked all his other medications to see if they will interact OK. I suggested Excedrin, but they ruled that out. Have to find out why! It works on me if I take it the minute I feel a sick headache coming on. (I take the kind without aspirin in it). It would be such a miracle to find a REASON for the “sometimes” behavior that has caused Ben such problems all these years!

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Christmas With Ben–2012


Ben at Christmas--2012

Ben at Christmas–2012

Christmas with Ben–2012
Posted on January 18, 2013 by autism45

Ben was home for Christmas for nine days and did GREAT! He is such a fine fellow at age 50 , fits into our routine, and goes everywhere with us. I think of the days gone by when he was small, and marvel that he is able to go to church with us and greet the people with a smile on his face now. He actually looks eager to see them and to be in that sacred place. I think of my dad, who was friendly and outgoing, and ponder that if Ben could carry on a conversation, I believe he would be like his Grandpa Fred! I sat beside him on the divan and we looked at the photo album of pictures taken when he was small. He loved that! He remembers relatives and people he hasn’t seen for 20 years or more (and they look a LOT different now). I asked him if he remembered when I used to chase him on a summer’s evening around the big circle our neighborhood was built on (he loved being chased). I would run after him saying, “I’m going to step on your shadow!” He would then laugh uncontrollably, and run faster to keep me from being able to do just that. When I talked about it, he cocked his head and smiled great big…as if reliving the event. I also noticed that he stopped working his puzzle when some beautiful Christmas music was playing that he had never heard before…as if entering that new tune into the computer in his head for future reference.

He also loves to help. He helped me by opening the cans while fixing the Christmas dinner, and poured the ingredients into the pans or bowls…then stirred them for me…all the time looking eager and interested. He helped me grind the cranberries for the salad, and added the cool whip, celery, nuts and marshmallows with gusto. He helped me make the brownies too. He also helped my husband carry the big, heavy 24 inch wooden leaf to the dining room table in from the bedroom and insert it to make the table bigger….all the time being VERY careful not to bump into anything with it. After our Christmas celebration, and everyone else had gone, he watched football and basketball with my husband. When it was closer to New Year’s, and we took down the Christmas decorations, he helped me carry the boxes and put them up on the high closet shelves. He gets such a look of pride when helping, and I’m sure it makes him feel useful. He didn’t seem sad about going back to his living unit which is four hours from Tulsa. I always fix him and my husband a sack lunch and Ben portions it out at the appropriate time, and loves being “in charge” of the eats! But, we heard that after he got back that night, he was quite upset and had to be given some ativan to calm him. It’s SO hard to know what to do. He enjoys his home visits so much and we so enjoy having him…but is it too much of a “culture shock” for him when has has to go back? It was still the holidays, and 30 men were without their usual routines, or classes. It can get a little chaotic from time to time, and it is so peaceful at home. We just have to believe that he has the best of both worlds. ..a place to live where he has a job and a routine to follow, and is still able to come home and be a part of his family. Thank God for such a blessed time with Ben!

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8. My Letter To Ben’s School Psychologist When He Was Seven–By Carole Norman Scott


This was what I wrote to the school Psychologist in 1970 when she suggested that our autistic son, Ben (at age seven), was too disruptive for their school, and needed to be placed elsewhere!  She listened to what I said, and he was at this school for another six years.  She was a very loving, caring mother herself, very astute in her profession, and I appreciated her a great deal.  This is only one of MANY such letters I wrote to teachers and doctors concerning Ben…but this one pretty much “says it all!”  CNS

Dear Mrs. ———–,                                                                          January 27, 1970

             I have had a good long time to think about our conversation last Friday concerning our son, Ben Scott.  The more I think on it, the more I feel compelled to write to you about him and his future. 

            You say the Bost School may not be the best place for Ben.  We say, it is the only place for him as of yet.  We can tell you from first-hand experience that although Ben may not be exactly like the other children there, he is definitely not like the other children at homes and schools for the emotionally disturbed.

I would imagine I could say in all honestly…that Ben is the only child of his kind in Ft. Smith.  We have never met any other child (or parents of children like him) in Springfield or Kansas City, Missouri…or in Fort Smith.  I’m sure there must have been a few in Kansas City, but the doctors we saw there about Ben could think of no other child to compare him to.  So you see, autism, or autistic tendencies (or whatever the label is), is very rare. There is a school there called HEED, that takes autistic children, but there was up to a two-year waiting period to be admitted.  The other cities mentioned had no facilities for these children other than the schools for the retarded!

Ben at age eight--note his troubled look!

            If there was only some way to make you understand that we agree with all you say about Ben…how he is frustrating and disruptive…believe me, we know that better than anyone!  But you must be told that Ben is making progress.  He can only be compared with himself — how he used to be — and I hope with all my heart that you will listen to me when I say — please don’t give up on him now!  Not now, when he is just beginning to “wake up” out of his deep, deep sleep.  Just since he started to school there, we have noticed changes in his awareness.  He has said some things that have surprised us so!  Do you realize what it means when a child like this talks at all…much less starts to offer information…no matter how simple the thought or sentence seems at first?  He actually told me the other day, “I played with Sharon and Mark.”  He told the teacher, “It’s MINE!”  That is absolutely the first time he has ever used that pronoun with no prompting…and appropriately.  If you only knew that less than a year ago, Ben would not look you in the eye or even look at the object you were trying to show him.  He is beginning to actually show an interest in learning!  This is the key for him: motivation and wanting to learn — knowing that he can learn.  Even though he cannot actually play the games the other children in the neighborhood play, he enjoys having them around, and has even said to one little boy, “Will you chase me Chris?”

            I know the progress is so slow, but let me ask you, how fast do you expect the other children there to progress?  Please remember that there used to be no place for retarded children until people, parents and the community pooled their efforts to provide schools for them.  We are just beginning to get organized and to be heard.  These children cannot be “thrown away” while they are waiting for their chance.

            Ben is not to be sent away from home.  He needs home and family — just as the other children there do.  He cannot be given up on…when there is the hope and the potential that he shows in “fleeting” glimpses.  He is not mean, destructive, or self-destructive.  He is only frustrated by inner tensions, and disruptive because he cannot communicate or deal with these tensions that produces.  It does not mean he is beyond help, and believe me, help is not what he will get at an institution.  We have seen what they do for them there first-hand.  Just because they are called a “Mental Institution” or a “Home for Emotionally Disturbed Children” does not mean that they have any “secret” teaching techniques or ways to handle them.  Therefore, they are without the love and security of home, as well as the stabilizing force of a school routine.

            Ben needs a chance…that’s it in one word!  For him to go to the same school two or three years in a row where they could know and measure his progress…would be of the utmost benefit to him and perhaps to the school too!  All I am trying to say is that we know there is no other place that will have a secret knowledge as to how to get through to him.  He can do too many things right and good to be given up on at the age of seven.  Think what all he may be able to do by the age of ten.

            Believe me, my husband and I have thought this out very carefully.  This is not just an emotional outburst of a mother for her son. It is based on the knowledge we have gathered throughout the past five years; by actually talking with many doctors, teachers, parent’s groups, counselors, and foremost…having lived with Ben on a twenty-four hour basis for seven years. 

            You will find that no one and no place will be anxious to work with Ben or children like him.  He does not fit into any already established classifications now receiving schooling.  It is only by dealing with him day in and day out that a parent or teacher can learn how thrilling it can be to see the look of awareness cross his face, and feel the sense of accomplishment at being the one person that has not “given up” on him, and has brought him one step closer to “feeling” LIFE around him!                         Most Sincerely,  Carole Scott

How Ben looked after three years at Bost School

PS Scroll down (quite a ways) to “Symptoms of Autism”–Ben’s Characteristics as a Child and then… as an Adult!  I hope and pray that you will find it most interesting and helpful!  Carole

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5. Kindergarten Experience and Family Changes for Ben–By: Carole Norman Scott


     BEN BECOMES A BIG BROTHER……SUMMER, 1967…FIVE YEARS OLD

I remember the summer of my third pregnancy as a happy one.  After I got over the initial “morning sickness” and was on my prenatal vitamins, I felt better than I had in a long time.  That allowed me full freedom to truly look forward to the arrival of a new baby in our family.  I don’t remember that I ever mentioned to my obstetrician that I already had a child with a problem.  After all, this was 1967, in the days before amniocentesis and genetic counseling.  There wasn’t any way to track down the cause or cure for autism then, and there still isn’t today.  It remains a mystery waiting to be solved.  About two weeks before the baby was due, I asked the doctor if he thought it would come at its allotted time (we weren’t privy as to what gender it would be back then).  My sister in Kansas City was going to take care of my children, and Ben needed “special” consideration…being autistic.  I shared further that I didn’t want to have to up-root him anymore than completely necessary because of this.  I will never forget the look on the doctor’s face.  It was like he was thinking, “Lady, are you crazy or something?  Why didn’t you tell me this before now?” I hadn’t told him on purpose — there was nothing he could have done, and he would only have worried me about it.  His partner had already done enough damage.  I had been so sick at first that I had lost weight.  When I was about six months along, I went in for a check-up and my regular doctor was out of town.  I had gained three and one-half pounds in two weeks.  The “stand in” doctor got all excited and told me if I kept gaining weight at that rate, I would be in danger of experiencing Toxemia, and causing damage to myself, as well as to the baby.  Needless to say–he caught me off guard, and almost scared me to death.  I heeded his warning so thoroughly that I only gained nine and one-half pounds my whole pregnancy, and the baby weighed 7 lb. 15 oz. at birth–so I came home from the hospital the envy of all new mothers –my regular clothes hanging in folds on me. I thought I must look great — but I’m afraid I really looked rather gaunt.

Ben riding his pedal tractor

Aside from these upsets, Maureen, Ben, and I enjoyed the summer together.  I took them to the wading pool, on picnics, and to play with the neighbor children often.  We spent long hours outside in the evenings.  We either walked, or rode bicycles and pedal toys, as we visited with neighbors along the way.  Jay was completing his MBA and was at school two nights every week.  He was also required to be out of town periodically and to work some very long hours, so I had the sole responsibility of the children a great deal of the time.  Thankfully, he was a big help when he was home though.  He often bathed Maureen and Ben and put them to bed, or baby-sat with them while I went to choir practice or did some shopping. That gave me some much needed relief.  He often treated them, one at a time, to a ride around the neighborhood on our big bicycle.  There was a seat attached right behind him for them to sit on.  They loved that, and the special attention the ride afforded each of them produced many squeals of delight.          

One particular evening, we missed Ben and could not find him anywhere. After checking the immediate neighborhood to no avail, we hurried up to the nearby park (which could only be reached by crossing a VERY busy street) and there he was, swinging to his heart’s content.  He was not lost!  He knew exactly where he was.  To his way of reasoning, it was his family that was “discombobbled!”  Living with him was exciting…we never knew what adventure each new day would bring!

Our baby was born early on the Friday morning of August 25th…two days before his due date.  All worked out well, for my sister had come down to Springfield the weekend before and had taken Maureen and Ben home with her.  That left me several days to rest and get ready for the birth.  Baby John looked a lot like his big brother as I recall.  He responded well from the start, and when they would bring him in for his feedings, I held him close to me.  When we both felt SO sleepy after he finished eating, I would lay him on his tummy up on my chest, where he was safe and warm…all the while (though maybe even subconsciously) believing that the closeness and loving body contact would keep him forever from becoming “autistic.”  I knew better, but I was taking no chances this time around!

          BEN GETS TO GO TO KINDERGARTEN–HIS MENTORING EPISODE

Ben paid more attention to the baby than I ever expected, and Maureen seemed genuinely thrilled to have a new little brother to shower some attention on — and to receive some attention from! We had many visitors that summer…coming to see the baby, and things were pretty hectic.  I was also busy trying to recuperate, and about two weeks before school was to start, I got an unexpected call from the Greenwood Laboratory School.   There was room in the Kindergarten class this year for Ben.  That sent us into a tailspin. There began a flurry of telephone calls…first, to the Kindergarten teacher explaining the situation with Ben, and then to the Pediatrician asking his opinion as to if it was feasible at all.  Then they had to call each other and discuss it, and then call us back.  Finally, it was the consensus of opinion that it was worth a try.  There were enough student teachers in the classroom to balance the student/teacher ratio, and they had just completed a new building with all the latest “bells and whistles.” The Kindergarten was also equipped with brand-new up to date teaching aids.  It even sported an observation room with one-way glass, so their newly hired psychologist (as well as the parents), could observe their children’s progress, or lack thereof, without being detected. 

The first day of school arrived, and it felt SO good to get Ben ready to go just like any other little child.  He and Maureen would be attending the same school, and riding in the same car-pool.  I only hoped that those arrangements wouldn’t give her some kind of a life-long “complex.”  She seemed as happy and relieved that Ben was being “accepted” as we were though.  She was an unusual “big sister.”  (I wasn’t to know until years later some of the things she experienced while only in the second grade; just being Ben’s older sister at that school.  As an adult, she wrote a story which enlightened us called, “My Brother’s Keeper”)!  As the school year progressed, the reports from Ben’s teachers included the fact that they were pleasantly surprised that he could do as much, or more than they had anticipated.  He still was “aloof” though, and did not relate as the other children did.  His behavior was a great “mystery” to one and all!  The newly-hired school psychologist contacted us about working with Ben on a one-to-one basis himself, and we were thrilled that his services were being made available to us.  He was only twenty-seven years old (my husband and I were twenty-nine at the time).  He was very eager and personable, and Ben seemed to take to him right off the bat.  This was more than we had even hoped for.  He met with us, and discussed ways of “operant-conditioning” we might try with Ben at home. He then set about trying to take Ben on short outings…to get to know him and his “eccentricities” better.  After several such trips, he decided he was going to take Ben for a full day…hoping to miraculously mold him into a “normal” child by his book-learned theories and assumptions.  Don’t get me wrong…he meant well and was a fine, young man, but he STILL had it in his mind that it was Ben’s upbringing and environment that had “stymied” his development…and he was out to right the wrong that had been done.  This one particular time, he came and got Ben, and I breathed a sigh of relief as they walked out the door, thinking… “A whole day to myself (although I still had two other children to care for)!  It wasn’t more than two hours later that the doorbell rang, and there he stood…with Ben in hand.  He said, “I couldn’t get Ben to do anything I wanted him to do…nothing was either “black or white.”  I thought, “DO TELL!”  THAT was the end of the one-on-one sessions with Ben.  He still saw him at the school and gave the teachers advice on how to “work” with Ben, but his incentive to “re-create” him had been stifled, I’m afraid.  How easy it was for him…when things didn’t go as he had it “pictured in his mind”…he was able to bring Ben back home and leave him for us to handle.  It wasn’t that easy for my husband and me however.  The days and years stretched far ahead in our mind’s eye…and the future pictured there didn’t look very rosy!

                         A CHANGE IN ENVIRONMENT–WE MOVE AGAIN

Ben's troubled look at age 5.

The summer of 1968, after Ben completed Kindergarten, my husband was offered a job in Lebanon, Missouri, with one of the clients of the CPA firm that had helped hire him at the college.  For a young man less than thirty years of age (and the sole bread-winner for our family), it was on offer he felt he could NOT refuse.  We discussed and considered all of the options for our children.  Maureen was then eight years old, and ready to enter the third grade.  She was a bright and capable child — often astounding us with her creativity in writing and illustrating little books on all the subjects she was interested in…birds, flowers, people, animals, behavior, and anything else that took her fancy at the moment.  Ben was six, and although he had made strides in the Lab school setting — going there had not “brought him out of it” as the doctors had originally given us cause to hope for.  The only educational  consideration left open to him in Springfield was to repeat the previous year’s agenda and see if he blossomed more thoroughly.  He was still very troubled and hard to deal with a great deal of the time — continuing to live in his own “distant” world.  Paradoxically, he could sometimes be the sweetest little guy you could ever hope to meet.  We never knew though, if he understood the reasoning behind rules, events, or relationships. Whatever the circumstances, he was still our precious little boy, and we did NOT want to make things more difficult for him, but to help him as much as possible.  John was almost one year old now, and was a joy — relating and learning normally in every way — blessing all our lives with his disposition, natural curiosity, and perceptiveness.  We all needed that “normalcy” at this point in our lives.

Whether or not to move was a hard decision.  Maureen had felt so much a sense of “belonging” at the Lab school because of her Dad being employed and well-recognized at the college.  How would the move affect her?  She was wise beyond her years in some matters it seemed, but still only her true age emotionally, and had dealt with so much already.  Would she understand at all?  Ben reacted with his usual “seeming” indifference; never acknowledging that he noticed anything unusual was transpiring.  Still, we knew from experience that change did bother him immensely — actually, more than most people!  John was happy at that time in his life to be anywhere that we were.  We wondered when it was acceptable to consider our own desires and dreams?

We decided to take the job, but to stay in our home in Springfield while Jay “scoped” it all out — commuting back and forth daily (it was a sixty mile trip each way).  We did this for over a month, and had planned to do it longer, but a couple who had previously looked at our house, came to us with an offer to buy it that we could not refuse.  We moved to Lebanon in the summer of 1968.  It was a town of approximately 10,000 people.  My intuition kept warning me with the thought, “This move can’t actually be happening!”  Somehow, it took place anyhow… against my better judgment.  Jay felt he had accomplished all that he had gone to the college to do, and was interested at that point in his life in a new challenge.  The position and monetary reward certainly figured in it all too, but it DID seem to be a job that offered growth and new experiences in his profession.

                                              FOR BETTER OR FOR WORSE

Our family in Lebanon--1968--Ben, 6

We rented a house there, and I set about trying to get it cleaned and fit to live in.  Jay was sent out of town the first week we were there, and whenever I look back on that experience, I immediately remember the HEAT (no air-conditioning) — and the DIRT, (the previous renters had four children and two huge dogs. They had all made their presence known profusely all through the house).  The dogs left fleas in the carpeting that bit John all over his legs and arms as he crawled, and the bathroom toilet tissue holder was missing because they had chewed it up!  The children left crayola marks all over the walls, and they had crushed the actual crayolas on to  the wooden and linoleum floors for me to try to clean off!

 We then found out that the local residents resented the company where Jay went to work, and did not look favorably on its employees.  Maureen’s school was NOT up to the Lab School standards, and she was the “new kid” whose Dad worked at the company all held in contempt.  Ben was enrolled in the afternoon kindergarten there, but the teacher was NOT excited about working with a problem child…whether it be in learning OR behavior.  Also, she did not have the extra help the teacher in Springfield had enjoyed.  It was a VERY trying time…one I can only liken to a VERY bad dream!  The good points were that Ben was being given a chance, and he was at least in school each day.  Thankfully, Maureen had a positive attitude and was willing to give it all a try.  When told we were going to move,  she gathered up her flower bulbs and seeds she had purchased for planting a flower garden…put them in a basket, and declared that she was prepared to move.  John continued to grow and thrive, whatever his surroundings.

 Our neighbor behind us in Lebanon was kind and helpful, and even drove to Springfield with me several times when I needed to take John to a doctor who was familiar with him.  Our neighbors across the street invited us for “home-made” ice-cream the first night we lived there…since they had observed us working so hard to get settled in.  That was truly a refreshing pause.  The whole block of neighbors actually gathered and watched Jay wash the windows of the house we rented…declaring that they had never seen them washed before.  Likewise, when he mowed the lawn, it was almost as if a cheer went up from the whole neighborhood.  A friend was provided for Maureen at her school whose Dad worked with Jay. Her mother turned out to be a sweet, understanding friend later on when I most needed one.  A family who had lived one block away from us in Springfield had also moved to Lebanon.  They had a little girl just Maureen’s age and a baby girl just a little older than John, as well as an older boy.  We helped bolster each other many a time, and traded baby-sitting periodically. The sky in Lebanon was beautiful at night.  Being a small town — there was not light from the city that marred the view of the heavens.  The stars were big and bright — soothing to the soul to behold.  On Halloween — the moon was full as we took the children “trick or treating,” and I will never forget how it all looked.  The heavens seemed close enough to reach out and touch…and I was greatly in need of such solace.

It was in this setting that Ben began to further regress — and we began our descent into what seemed a “living hell” at the time.  My worst fears had been confirmed in that the move DID seem to bother him, even more than it would most people (although we will NEVER know for sure).  His teacher was not that familiar with autism, so she suggested that we consider the School for the Retarded there in Lebanon.  We were not prepared for this, even though we knew that might be the next step…even if we had stayed in Springfield.  We decided to  try a pilot program we were told about.  It was at a new behavior clinic for autistic children in Columbia, MO. He was to stay there for several weeks (at age 6), and be observed and worked with. We were SO torn…but had hope against hope that just “maybe” it could help him, and we were desperate by that time.  There were still such great hopes for Ben.  He showed periodic glimmers of extreme intelligence, and we felt there was STILL much potential waiting to be tapped.  It was always as though — with his bright eyes and beautiful countenance — he was on the verge of understanding and relating.  It seemed that if some little something in him would just “click,” everything would then fall into place, and he would be perfectly all right; even though his problems seemed insurmountable at the time!  (Follow up with on Page section: 4. “Pilot Program at University for Ben.”)

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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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2. My Diary: Ben’s Birth To Diagnosis At Age Four–By Carole Norman Scott


                                                                                                                                                                                                                                                                                                                                          Two

                        BEN’S  BABYHOOD–SOME WORRIES EVEN THEN

Ben at birth–seemingly “normal” in every way!

July 4th, 1962–Two little red pills and a “hypo” (at the doctor’s orders to help me through the pain of labor–that’s how they did it back then) soon sent me into oblivion.  So much so, that I was not even aware that little Benjamin was born only two hours after I arrived at the hospital.  I did not get to see him breathe his first breath, or to hold him close to me and reassure him of my love.  He was on his own as he was circumcised, and was allowed to cry heartily for several hours thereafter, his arms flailing the air; shaking his fists in protest!  I was told that his face and body were flushed crimson (like the cap of bright red hair he sported at birth), as he voiced his displeasure at the proceedings.  He was a firecracker; both by date of birth, and by temperament!      

I gleaned from these reports that my husband and the expectant grandparents furnished, that Ben did not seem too pleased with leaving the warmth and security he had enjoyed for the past nine months and entering this cold, cruel world he would be expected to call home.  (This was long before the era of husband and family being included so readily in the birthing process.  They were forced to sit in the waiting room and wonder what was happening.)  I finally “came to” enough to snuggle him to me, and to check him over.  I was delighted to find that he was as beautiful and perfectly formed as I had anticipated.  I now had one son and one daughter.  I was off to a rousing start.

3 months – You are such a good baby, Ben. You hardly ever cry…you just eat, sleep, and entertain yourself with your birdies mobile and cradle gym.  We hardly know you’re around.  You grin every time anyone even looks at you, and you cackle out loud when we play pat-a-cake with you.

 9 months–When you were nine months old, your cousin Stephen was born.  Your Aunt Shirley’s two older children came to stay with us as she recuperated from her delivery.  Melinda was nine, Billy, six, and your sister Maureen, was three.  They had great fun playing together, and Melinda loved to play house with you.  Somehow, being with the other children made me more aware of how your development was progressing. I had written in your baby book:  “At nine months, you like to stand up in your jump-chair, but so far you haven’t made any attempt at all to raise  yourself to a sitting position, or to crawl.  I sure hope it is just because you don’t want to yet.  I am beginning to worry.  You seem to be just fine though.  You’ll probably just start doing it all a sudden one day!”  (You can see that a mother’s intuition had already kicked in…that something wasn’t “quite right”…but I couldn’t put my finger on it!) 

You are still all grinny and happy.  Your hair is still as red as it can be and your eyes are still blue.  You really lap up the attention, and Maureen really gives it to you.  She loves you and plays with you (even gets in the playpen with you).  She mentions every now and then “When he grows up he’ll eat Sugar Stars with me.”  You are beginning to like your jump chair real well and now when I lay you in your playpen, you immediately roll over on your stomach and then you start crying because you can’t roll back.  Your latest showing off trick is shaking your head “no!”

At eleven months, I wrote: “I still wonder about you Ben, and your inability to raise yourself up or to crawl, etc.  You love to walk with us holding onto your hands so I KNOW there’s nothing wrong.  You are such a sweet little fellow.                                             

Two weeks later:  “You started sitting up from a laying down position and about one week later, you were scooting yourself around the floor and getting anywhere you wanted to go.  I sure am glad because I was really beginning to be concerned.”

At thirteen months, I entered: “You crawl real fast anywhere you want to go.  You pull yourself up and down all the time, and can walk just holding onto just one of my hands.  We’re awfully proud of you.”

 

Ben at 15 months

At fifteen months, I offered this bit of information:  “You are standing up by yourself, but lack the confidence to take off and then walk by yourself.  You want to so badly. I think your babyhood is about over though, because you get into everything just crawling, and you do naughty things just to get attention!  Oh what a pill; but you are still a very special sweetest of all baby boys.  Little Redhead!”

A few weeks later, I had recorded a victory message.  “Ben, you are walking all by yourself!  No more concern — you do it like you always could have — like you were just waiting until you could start out perfectly.”

At sixteen or seventeen months of age, you experienced a vomiting and diarrhea sickness that lingered for several weeks.  I took you to the doctor, and carried out all of his instructions for your recuperation.  Looking back, I wonder if you got de-hydrated, and I never knew!  I had done all the doctor said.

At eighteen months, you had your tear-duct operated on at St. Luke’s hospital.  The young intern came to the waiting room to get you out of my arms (Grandma Hazel went with us), and you smiled and giggled for him and went right with him with no fussing at all.  I was real proud of you.  They wouldn’t let me come in with you (this was back in 1964).  It was hard to sit out there and wait.  When they brought you back to me, the Doctor said that you were the best-natured little fellow he had ever seen — that you were giggling right up until they put the ether mask over your face.  Grandma Hazel and I thought that was being pleasant above and beyond the call of duty!  The operation did not correct the problem.

20 months — Oh Ben!  You are such a baby boy!  You can just roll your eyes and get all sorts of attention from passers-by.  You are starting to really say all kinds of words.  You repeat everything we say.  You can say, “story,” “Maureen,” “cone,” “sis,” “kitty-cat,” “Mary Kay,” and of course, “Mommy” and “Daddy.”  Those are just a few because you can repeat almost anything!  You like to play out in the fenced-in part of our yard, and are very content there, even when the older kids are further out in the yard.  You are very, very lovable and will come and give any of us a big hug and love pats just out of the clear blue sky.  (Maureen says, “Don’t forget to write that Ben says “Big Boy.)  You go to Sunday School (the nursery) every Sunday and Margaret Hall says that you really get mothered around by the little girls.  You just lap it up though.  Your nick-name is “Jo-bobbins.”

Ben’s black eyes when he was almost well!

Two years:  I started potty-training you today (in earnest).  You have done real well.  You are so sweet.  You are talking so much now and are really growing up all at once.  You were running after some little children, and you fell against the opened front-door and hit your forehead.  By the time I could get to you and pick you up, you had a huge goose-egg there.  It almost made me sick when I looked at it, it scared me so.  I ran to the phone and called the doctor (who had been my pediatrician when I was a little girl).  I described to him what had happened, and the shape you were in.  His response was, “Now that’s really something to get upset about, isn’t it?” (said in a mocking manner).  I suppose it was his way of calming a frightened mother, but I have always regretted that he did not have me bring you in and check you himself.  He told me signs of concussion to watch for, which I did — faithfully.  You seemed to exhibit none of them, and although both of your eyes were blackened as the days passed because the blood pooled in the soft tissue surrounding them…physically, you seemed to do just fine.  You looked like a little raccoon, and people felt sorry for you and gave you lots of attention.  You even looked that way in your Christmas “Santa Claus”picture.                                                              

Shortly after you recovered from that episode, you fell as you were running into the bathroom and hit your chin on the edge of the bathtub.  Blood spurted everywhere, and just about scared me to death.  Again, I called the doctor, and he said to take you to the nearest hospital’s emergency room and have it stitched closed.  I did, (all by myself, except for Maureen, who was five…Jay was out of town on business).  Again, they took you from me and we could hear you screaming bloody murder.  It was TERRIBLE to have to stand there and listen, and not be able to help you.  When I asked the doctor later how they had gone about that, he said they had wrapped you in sheet like a mummy and took the stitches in your chin.  You have been through some difficult situations and dealt with them SO bravely.  You also had a second operation on your tear duct that was finally successful!                                                 

Ben at age 28 months

At twenty-eight months I related, “Ben, you are such a sweet boy.  People take on and on about you and your red hair!  You are VERY lovable and loving.  You play around real good, entertaining yourself, and then you come over and hug my leg and suck your thumb.  With that, you seem ready to go play again.  You get along so good with Maureen and you worship her like she’s just about “it.”  You imitate what she says, and if she gets into trouble, you cloud up and say “Dat’s Goreenie!”  You don’t like for her to get fussed at…AT ALL!                                           

You talk and talk and you pronounce all your L’s like R’s.  You say, “I want to go pray” (for play).  When Uncle Hugie was here today you got your little toy gun and pointed it at him and said, “Stick ’em up, Buddy!”  I thought he was going to pop.  You and Maureen are always playing like you are cartoon characters.  You are usually Yogi Bear, and she is Boo-Boo Bear.  She hunted you up some little bow ties for you both to wear. 

You are starting to try to color with Maureen and you love to play Mouse-Trap game.  You can count to 12 all by yourself, and when you are supposed to be taking your nap, you are in there yelling “5-4-3-2-1-BLAST-OFF!!”  Grandpa Fred got such a kick out of you saying “Yippyaye, Yippyaye — I just got to say Yippyaye,” when you were bouncing in their bed. You go to Sunday School every Sunday that you are able, and have only been unhappy about it once or twice, and then only because Maureen went into a different room.”

                             OUR MOVE TO SPRINGFIELD, MISSOURI 

On January 29, 1965 (you were two and one-half years old), we moved to Springfield, MO.  You seem to be quite content here, even though we had to leave all of our relatives in Kansas City.  You and Maureen play real well together and half the time she has you being one cartoon character or another.  So far today, you have already been Yogi Bear, Tuffy Mouse and Dixie Mouse.  You go along with it pretty well too.                         

When you were almost three years old, you, Daddy, Maureen and I went to look at a house (we were in the market).  You and Maureen went into the bathroom to check it out, and then came walking back into the room where we were.  You seemed to be just fine, then all of a sudden your eyes started rolling back in your head, and you fainted.  Again, we were very scared.  That had never happened before.  You had been nursing an ear infection for the past week.  I had taken you to the doctor (a new one for us…having just moved to Springfield).  You were running no fever that we knew of, and were seemingly on the road to recovery when this fainting spell occurred.  You revived in just a few seconds, and I called the doctor just as soon as we got home and relayed to him all that had happened.  He said to watch you…told me some things to observe, and that was that.  You seemed to have no ill effects from that point on, except that we noticed that you stuttered a little bit (which you hadn’t done before).  You then recovered from your ear infection in due time.  (In looking back, I’m afraid you had a seizure of sorts.)

2 and ½ years old—On March 3rd, you made your first train trip.  We rode to Kansas City to visit the grandmas and grandpas.  You behaved so nicely on the train (five hours), and all the time we were visiting.  Mommy was sure proud of you.

We lived in an apartment building the first six months or so that we were in Springfield, but finally found a house that suited us, and moved in during the summer of 1965.  You seemed to like it there just fine, but about that same time, we traded off our old Ford car that we had owned since you were born, and also gave away our pet cat that had been in the family since before you arrived on the scene.  She had given us two litters of kittens, and we had enjoyed them so, but we discovered that Maureen was allergic to cats; thus the cat’s removal.  I always wondered what you thought of all these changes—you never asked ANY questions, just seemed to go along with the flow.

3 years—You are quite different from Maureen in temperament.  A little slower in action; but I think you are quite a deep thinker for such a little guy.

Ben-3, his sister Maureen- 5

  I can’t believe you will be three next month.  You are not a baby anymore.  You are talking real well, and you sing real pretty too!  You love to play with Maureen, but are beginning to let her know you are not to be pushed around.  You are a darling, lovable, quick-tempered, cuddly little red-headed guy.

                       BEGINNING OF REGRESSION NOTED

In September of 1965 (you were 3 years, 2 months)–Maureen started Kindergarten at the Laboratory School at the College where your daddy worked.  She was so excited, but when we drove up to the big circle drive to let her out…there was no place to park, and it was crowded.  She had been there many times already and knew her way, and WANTED to go on her own, so I let her.  You watched her go up the big cement steps, into the building and you called after her, “Goreenie, come back!!”  I can remember thinking even then, that it was as if you perceived her being swallowed up by that building, and never coming out.  Your voice was pleading – like you thought you would never see her again.  I noticed that – and the fact that you seemed to be VERY lonely without her.  You didn’t play like other little boys I had observed, or seem to know how to entertain yourself like others your age.

 All that fall, I had been singing with the Sweet Adelines, and a group of us had formed a quartet.  We had practices once a week, and you were the only little child not in school yet, so you went to the practices with me.  You behaved very well, but as we were practicing, I would notice that you had left the room.  When I finally hunted you up, you were always smack in the middle of the hostess’s bed, covered up with blankets, giggling to yourself – like you knew a joke that no one else was privy to.  That happened over and over, and no amount of scolding, or even a little spanking, would deter you from finding the bed, and snuggling down into it.

 Finally, at home you started to withdraw and stay in your room all by yourself.  I would go to check on you, and find you in the pill-box (a card-board army play-house), buttoning and unbuttoning your shirt.  It was as though you were practicing so that you could do it perfectly – but didn’t want anyone to see you.  You played with your little cars by just rolling them back and forth, watching the wheels go around.  All of this occurred while Maureen was at school, but when she came home, you did not come out of it and play with her like other little brothers would.  You wouldn’t look at things on you own, or even when they were pointed out to you, and you wouldn’t try to play games, or with other children.  You got a far-away look in your eyes.

You began to act confused, and didn’t seem sure of what to answer when asked a question.  You finally quit answering altogether.  You had experienced another vomiting and diarrhea episode and you were really sick.  You would just lie and look at me with big, sunken eyes.  I had taken you to the doctor, and you were on a diet of bananas, seven-up and jello, but you would still be sick, and one time in particular, when you went to throw up in the toilet, you cried out, “Save me!”  This was when you were three and one-half years old.  I remember thinking how profound that statement was for such a little fellow.  It was as though you perceived that when you vomited, your insides were falling out of you, and you sounded terrified!  (In look back, I’m afraid that again, you were de-hydrated, but no one checked that, or mentioned it to me if they did, and I didn’t know to ask.)

About this same time, your daddy was giving you your bath before you went to bed on a summer’s evening.  You had been going barefoot, so your feet were extra dirty.  He was trying to wash between your toes, and you cried and yelled, “Help, you’re roughing me up…you’re tearing my skin off my bones!”  Now HOW would a 3 ½ year old know about skin tearing off of bones?  We pondered THAT at great lengths!  Again, for such a young child…that was such a “profound” way of putting it.  It seemed that you were “extra” intelligent, AND “extra” sensitive!

In November of that same year, Maureen had a sudden asthma attack while your dad was out of town, and I had to rush her to the hospital and get her situated.  I left you with a neighbor up the street whose teen-age girls were our baby-sitters.  They were very good people who cared about you.  I ended up being at the hospital until nine o’clock that night because the doctor had told the nurses what to do, and he didn’t make it in to see us until after eight o’clock.  When I finally got home, the neighbors had taken you to our home and put you to bed for the night.  Again, you never asked any questions about where we were, how Maureen was, or what had happened.  At the time, and especially in retrospect, I found that lack of curiosity very strange.  You wet your pants that night (which was unusual), but I never knew if it was because they forgot to have you use the bathroom before you went to bed, or if you were upset about all the proceedings, and the chaos of the day!

                                      MY DIARY: A MOTHER’S MISGIVINGS

3 1/2 years — I just have to write down my inner-most thoughts right now in hopes that several months from now, I can read this over and everything that I am so worried about now will have resolved itself. 

My problem right now is Ben.  It just seems like in these last few months since Christmas, he has changed so that I have actually wondered if there is something wrong with him.  I even went so far as to call a psychologist about him, but decided to cancel the appointment for the time being.  What is worrying us about him is the lack of communication we feel with him.  It seems that he isn’t listening when we talk to him.  He babbles about something else or sings some commercial while we’re trying to talk, whether we’re praising him, or just carrying on a regular conversation, or disciplining him.  He never starts a conversation or asks questions about anything.

 He still has to be told when to go to the bathroom and still wets his pants if he isn’t told.  He also smudges in them continually, and sometimes I just get to feeling like everything is hopeless.  It seems that no amount of talking, reasoning, or disciplining gets through to him.  He is also getting quite a temper, and when I tell him “no,” he tries to pinch me or hit at me.

It seems that lately we sometimes have to resort to a swat on his bottom because he doesn’t act like he cares enough about anything to punish him by taking it away and you never know if you have made your point.  In our day to day living, all these things don’t happen every day, so it is easy to rationalize some of them, or even to know why they happen, but when it goes on week after week, it is pretty hard to take.  I hope and pray it is just a stage he is going through and nothing really serious.  He has always been such a sweet child and so easy to handle that is makes this seem 100% worse because you wonder how he could change so much. I’m getting so I dread taking him anywhere, because he causes some kind of a scene. He seems to have no pride to work with…no feeling of “self”…and he calls himself “you”…instead of “I” (like “you can have a cookie” instead of “can I have a cookie”)?  It has helped me to write it all down and get it off my chest.

We went to Kansas City the week-end of Easter and he acted so stubborn while we were there that we came home upset.  He wouldn’t even look at anyone when they talked to him and never answered a question when someone (all relatives) tried to draw him out and give him some attention.  He didn’t really act like he knew who anyone was, and the only attention he paid to them was if they would chase him.  He just ignored his cousins, and Stevie (nine months younger than Ben) wanted to play so badly.  He couldn’t understand why Ben wouldn’t do as he asked.

The main thing that bothers us is that when he does talk, it is always sentences that someone has said to him before.  Out of the clear blue sky, he’ll say, “Kirsten is going to smack you.”  (Kirsten is a little neighbor girl.)  He also mentions sentences of correction such as “Ben’s making a mess,” or “Don’t touch the bottles” (of perfume on my dresser).  It seems he remembers these things instead of all the good and happy times we have as a family and how much he is loved and cared for.

Another hard thing to understand is that he can say anything he wants to if its something he wants, like food, toys, etc.  Surely, a three and one-half year old can’t be acting like this on purpose, but it makes you wonder sometimes.  I hope and pray it is just a stage he is going through and nothing really serious.

He has begun to wake up by 5:00 or 5:30am every morning of the world.  It makes no difference what time he is put to bed, and I have tried everything!  Thankfully, he DOES go to bed by 7:30pm, so I DO get a little reprieve after he and Maureen have gone to bed — a chance to pull myself together (after a fashion), and prepare for the next onslaught!  He will get up the next morning at 5:00am, go into the kitchen, and begin to prepare himself a bowl of cereal, and then go through the whole box if no one gets up to oversee the operation.  He is making his “noises” (moanings with his hand up to his mouth pointed towards his ears, and “whooshes”…all very hard to describe) all the time, and I am concerned that EVERYONE will miss out on their sleep, so since I am the one “tuned in” to his adventures, I am the one who gets up early day after day.  When I go to bed at night (never any later than 10:30pm), I find myself dreading the beginning of a new day, and the same problems facing me, with no hint at a solution to them. Unbeknownst to me at the time, this waking phenomenon will continue for the next three to four years without a hitch.  How gracious that we cannot foresee the future—for if I had known that at this stage, as well as what all was ahead, I would have never made it.

Ben in bed with his stuffed “pals!”

Summer (1966)–4 years old, we went on another vacation.  It was a C.P.A. Seminar in New York, City which your Daddy had to attend. And I got to go with him this time.  We left you and Maureen in Kansas City with the Grandmas and Grandpas, because you had such close relationships with them and they loved getting to spend the time with you.  I thought the whole thing was working out so wonderfully.  I needed a rest, and you all would get lots of attention!  What could be better!  We worked it so that each child stayed with each set of grandparents for one week — then switched.  That way, the grandparents had only one child at a time to care for, and each child got “special” treatment.  My sister told me later that Jay’s mother came to pick up Maureen at her house (where Ben happened to be with my mother).  When Maureen walked out the door, he started wailing, and she said that it wasn’t just “crying” — it was as though his heart was broken.  We pondered all these things, wondering what was going through his mind.  How was he perceiving these situations?  Did he understand the passage of time?  (I know that people explained to him that they WOULD be reunited in a few days .)  Who will ever know exactly what he was thinking and feeling?  

 4 years — I am so glad I wrote down how things were going in April because in comparing them to the way they are now, I’m afraid I won’t be able to say they have changed like I had hoped.  Ben seems to be getting worse as he gets older and it has concerned us so that we did call a Psychologist and took Ben to see him in June.  It was a very upsetting meeting because Ben would not talk to him and babbled his sentences that he says over and over.  They are, “Ben’s gruntying his pants,” “Shout Hooray for Thanksgiving Day,” “Ben’s wasting the cereal,” “Let’s play 1,2,3,” and “Chase me.”  The Doctor said that Ben should have an EEG test and other tests to rule out any physical difficulties.  The only thing he mentioned was “Autism,” which he didn’t tell us anything about, and I was left to look it up on my own.  He did recommend that we take Ben to the University of Kansas Medical Center where they could do physical tests, and observe Ben’s behavior.  After we left his office, I went to the library at the college where Jay worked, and found it in a book. It was NOT encouraging.  As I walked down the steps to leave, my feet felt “leaden”…like the life ahead of me was going to be HEAVY!  I found my head reeling with the thought, “What has become of my sweet baby boy?  Where has he gone?”

Ben was enrolled in the Laboratory preschool at the college, and it was to start in less than two months. I was counting so much on it helping Ben. The doctor said to try it, but not to be surprised if they wouldn’t keep him. Needless to say, Jay and I have been in a state of shock ever since our trip to the doctor.  We have done much, much soul searching!(Continued on a page at the top called 3. “Kindergarten Experience and Family Changes for Ben”).

 

                                                                                                                                                                                                                                                                                                                                                                     That

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My Diary About Ben–Birth To Four Years


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Autistic Child’s Spiritual Potential! By: Carole Norman Scott


 When I toured The Little Lighthouse (a school in Tulsa, OK. for handicapped children), I noticed Bible Verses on the walls.  I was so glad because as I tell in my testimony, Spiritually…. these special children are often already whole and healed.  I feel of one Spirit with my son Ben.  I can talk to him about Spiritual things and he listens, and looks intent and interested.  He will pray with me (quietly), and he loves the name of Jesus in word and song.

 The people at his place of residence didn’t know that he could sing until I told them and played a tape for them of him singing “To God Be The Glory.”  The assistant pastor there then gave special lessons to Ben and several other children, helping them to learn hymns and to sing in a choir they established for the Church services.  Ben even got to sing a solo of  “To God Be The Glory” for a church service there, and all the people who live and work with him were blessed because it ministered to them, and because they did not know Ben that could do that.  I think of Ben everytime we sing that hymn in church.

Ben (19) with his Kindergarten teacher.

 In 1981, our pastor in Ft. Smith, AR. visited Korea and saw all of the spiritual revival that was taking place there.  He came back filled with the Spirit and preached and taught with renewed fervor.  He encouraged us to read through the Bible daily and to believe that God not only “could” do what we asked, but “would” do it.  I thought of my years of prayer for Ben and decided to begin praising God that it was already done!  I also started reading my Bible, and for the first time, read through Matthew, Mark, Luke, and John consecutively.  I noticed how it stated time and again that Jesus healed the people, and that many times it was an instantaneous healing.  I began to see Ben in my mind’s eye as whole and healed…radiant and enjoying life.  It has been from that time, when Ben was nineteen years old, that he has begun his journey into ABUNDANT  LIFE!

 Some of the things of a spiritual nature that Ben has said throughout his lifetime have been quite profound.  He has a grasp of the Spiritual realm that blesses me so!

 1.  When he was about ten years old, he attended a Sunday School class for handicapped children at one of our local churches in Ft. Smith, and when he came home I asked him what he had learned at Sunday School.  I said, “Ben, did you learn about Jesus?”  Very quickly, like it slipped out, he answered “God is Love!”

  

Ben at 14

2.  After my father’s death in September, 1975, Ben did not question his absence, even though he and his grandpa were very close.  My mother and I later thought we should explain to Ben what had happened, so we told him of his grandpa’s illness and death, and that he was now in heaven with Jesus.  Ben listened, but still did not make any comment.  So, to make sure he understood, I repeated, “Grandpa is now —–” (thinking he would finish the sentence…saying “in heaven”).  Instead, Ben quickly blurted out “FREE!”  My mother and I just sat there with our mouths hanging open.  Of all the words in the English language, it seemed very unlikely that Ben just happened on to that particular one.  My mother thought that over and then said, “Who but Ben would understand about being “set free?”  I had to wholeheartedly agree!  (Ben was about fourteen years old at the time.)

  3.  After he had moved away from home, he came home for a visit and wentto church with us (which was truly a step of faith on our part).  He behaved very well, so when we got in the car to go home I said, “Ben, you sure were a good boy in church!”  He quickly replied “Praise the Lord”…then after a pause added, “Come to Glory!”  (About fourteen years old.)

  4.  We said a blessing before we ate, and I thought to asked Ben if he would like to say it.  There was quiet for several seconds…then he said, “Thank you for Jesus Christ, Amen!”   (About eighteen years old.)

 

Ben at 25

5.  Ben was again home for a visit.  I was out in the front yard pulling weeds, and Ben was sitting on the front porch gently bouncing in the “springy” porch chairs.  Suddenly, he came out to where I was, knelt down and looked intently into my eyes and said, “City of Faith, City of Faith.”  I said, “Yes, there it is Ben (because you could see it from our front yard in Tulsa, OK).  That did not seem to satisfy him, and he again said, “City of Faith, City of Faith”…still looking directly at me.  I said, “What about the City of Faith Ben?”  He held his gaze steady and deliberately stated, “PRAY TO THE LORD GOD.”  We had driven by the City of Faith earlier in the week and he had noticed the “Praying Hands” in front of it and he had placed his hands together in the same manner.  I was surprised and pleased at his actions, and had said, “Yes Ben, the hands are praying to God.”  We never knew if he was referring to what I had told him, or if he was admonishing us to pray for the City of Faith. OR, it might have been…asking us to take him to be prayed for there.  But in the ensuing years, when the city of Faith suffered financial reversals and was subsequently sold, we felt that Ben’s words might have had a prophetic ring to them.  (He was about twenty-five years old at this time.)

 6.  I took Ben with me to the prayer room at our church when he was home for a visit.  Instead of praying for the requests silently as I usually did, I felt led to pray out loud so that Ben could hear the prayers and be a part of the proceedings.  When I got all through, I asked Ben if he would like to add anything to the prayer. There was silence for a moment, then he slowly and deliberately said “H-O-L-Y   S-P-I-R-I-T!”  I was awed.  The intensity of his statement overwhelmed me and gave me chills.  After all, that really said it all!  (About twenty-seven years old.)

  7. I asked Ben what Jesus did for us, and he cocked his head and looked like he was thinking deep thoughts.  I decided that I would begin the sentence for him and maybe he could complete it, or at least put in the word he was thinking of.  I said, “Ben, Jesus” —- he slowly said “DIED.”  I said, “On the” —– he added “CROSS!”  I excitedly said, “for our” —- and he triumphantly exclaimed “SINS!” (About twenty-eight years old.)

 

Ben (34), and his sister, Maureen

8.  We took Ben to have him prayed for at our church after he was found to be suffering from severe esophagitis.  When Larry Eddings started praying and Jay and I each placed a hand on his shoulders, Ben relaxed and almost slumped (a reaction which thrilled me–in that he reacted spiritually the same way that others do when prayed for).  Afterwards, we stood in a circle and took communion.  Then we started singing, “There is power, power, wonder working power in the blood, of the Lamb.”  Ben immediately started singing with us without waiting for any encouragement.  He knew all of the words (and I didn’t know he knew that song).  He also sang, “We bring the sacrifice of praise into the house of the Lord” with us and knew all of those words too.  His face was radiant and he had a BIG smile on his face all the while.  When we went to leave, the man who had prayed for him gave him a hug and told him it was so good to meet him.   Ben looked a him intently, right in the eyes, and said, “PRAISE GOD!”  It was like he was letting the fellow know that he was receiving all that was said and done in his behalf.  He was thirty-four years old at this time.

9.  All through the years, Ben has continued to respond to Spiritual input, and has a glowing, radiant look on his face when going to church with us.  The people in the choir tell me that they LOVE looking down at Ben because of his smile and “glow!”  He prays before our meals when asked, and waits for us to say a prayer before he eats.  He is my Spiritual buddie extra-ordinaire at age forty-eight.

             

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Quiet Solace–A Poem by: Carole Norman Scott


                      QUIET SOLACE

    A good report Lord — what a joy!

    Ben’s teacher has pronounced him

    Calm, co-operative, and smiling…

    Adjectives we have longed to hear.

    Forever in coming; but worth the wait.

    With his maturity…a gentle reserve.

    Even his siblings individually confess

    His demeanor equals “quiet” normalcy!

    Then, a sudden family crisis occurs

    As Ben is scheduled for a visit home.

    Oddly, his behavior is not the source.

    He becomes a comfort in our distress.

    Who would have thought it possible…

    To find solace in one with autism?

    Understanding, without a word spoken…

    Our spirits joined in hushed communion!

                        By: L. Carole Scott

                         Ben–33 years old

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How Parents Feel (or how I felt)!


Some Things Parents Might Feel About Having a Handicapped Child.  By: Carole Norman Scott

       1.  Parents have experienced things that they have never shared with anyone—it hurts too badly (our two in-house clinic experiences when Ben was only four and six years old.  He was “observed” in order to be diagnosed or taught).  I’ll write about these later.

       2.  You’ve heard people say, “Having a baby sure changes your life-style”—an understatement when you are dealing with a handicapped child.

       3.  You never expect it to happen to you.  There is unresolved guilt.  You think back over your pregnancy and every move you have made since the birth to explain it.  (Had flu while pregnant, took medicine, painted rooms, but did with Maureen too).—Doctors don’t tell you everything to do or not do unless you know to ask.

       4.  We all know we have made some mistakes and can think of things we wish we had done differently.  It is such a responsibility to raise any child—you feel you must have done something wrong or left something undone to cause it.

       5.  Some have never had this type problem in their family, or have never even been around “handicapped” people (especially a baby) — I had a “normal” childhood.  There was no one in my family like Ben.  I only knew of one little girl who was deaf, but I had no actual dealings with her.  She went to a “special” school.

       6.  The joy of “new life” is shattered when the child’s problem is diagnosed and labeled.  Everyone has looked forward to the birth.  There have been showers by friends in expectation of a great event.   People don’t know what to say.  No one knows how to react (even close family).  They are overwhelmed too, and grandparents can hurt as badly in their own way as the parents because they hurt for their children too.

       7.  Parents feel a deep burden—a sadness—like a death, but there is no rite of passage for such an event.—They are so disappointed, yet expected to function—with no time out to even mourn.

       8.  The normal “pride” in an offspring is affected (especially in the father if the child is a boy).  Parents may inadvertently place blame on each other or in the in-laws and their idiosyncrasies—they are desperate for a reason.  That can cause friction in their marriage when they need to pull together the most.                           

       9.  Many times, the parents are in a state of depression, but don’t even know it.  Having a handicapped child involves the same steps of grief as a death.        

      10.  People don’t want to hear about it.  It’s too depressing for them. They have their own troubles.  The parents of the handicapped child feel shunned, in a way. 

      11.  The parents hurt for the child.  Both they and the child are so helpless, and the future so bleak.  They feel that it isn’t fair.  This is an innocent little child who doesn’t deserve such a fate. The parents worry for the child’s safety, and don’t know how they’ll ever be able to cope for a lifetime with this problem.

      12.  It is so hard to be around other people and their children who act and look normally, and to hear other mother’s trite complaints.  The parents of the handicapped child look at other children developing normally and are happy for them, but sad inside for their child.

      13.  The parents really don’t understand all the feelings they are having themselves (I did not realize that I was depressed—I didn’t have time to dwell on it.)

      14.  It affects the whole family.  Other people never seem to take into consideration that the siblings in a family with a handicapped brother or sister have a lot to deal with too.  In turn, the parents sometimes have “double trouble” being concerned about how this will affect their other children.  They don’t feel it’s fair to them either.  (Excerpt from a letter I wrote my parents when Ben was little): “Mother, don’t get upset and think that you have done something wrong.  You haven’t!  It’s me that is rather muttled lately.  There has just been too much happen too soon, and too much criticism from other people (doctors) that I suppose makes me sensitive to how my actions appear to others.  I’ll get over it.  I have before.  It just has all been too recent. I told Jay that sometimes I get so tired of acting like everything’s fine.  Ben’s problem is such an overwhelming one and it does affect every facet of our lives and of Maureen’s and John’s too.  I just want to do things right by them so badly and I don’t always feel up to it.  I guess all this will just take a steady effort on all our parts.”                                                    

       15.  It is much harder to find people to baby-sit with your handicapped child.  They take so much more time and care.  These children do not usually play appropriately and are harder to entertain.  They do not relate normally.

       16.  It is harder to find time for your husband (or wife) and the other children.  Sometimes you become obsessed that you are the “only one” that can care properly for the child.

        17.  It is hard to know how to go about disciplining these children.  You don’t know how much they understand, and don’t know how much to expect or how much to carry through.  You must try to treat them as normal as possible, but don’t know if you are being fair to them.  That places more “guilt” on you. 

        18.  Potty-training is so hard!  You don’t know if they grasp the reasoning behind it or feel the same “urges” that other people do.  (Ben does not feel pain or react to it as others do.)  It took him several years to handle the “grunty” problem.  He would go a whole week without going, and then “smudge” in his pants.  It was a terribly “gross” ordeal (for him AND for us).  I took him to the doctor and was assured there was nothing physically wrong…but found out later in his life that he had been impacted, and little bits were oozing out around the “clog!”  Oh…poor Ben!  If only we’d known!

        19.  Doctors sometimes make things harder, no matter what the diagnosis, by hinting that you are not handling things properly when you are doing well to survive.  Parents could use so much more praise!  You have done wonderfully!  You are to be commended—I commend you—commend yourself!  The doctors said that Ben was not as bad off as he could be—I finally decided that just maybe that was because he was in our family!

        20.  The waiting to find answers, and your hopes shattered time after time when no answers are found is so hard.  Unless there is a death of the child, there is no end to it (and you feel guilty that such thoughts would even enter your head).  You know that you cannot stand up under the strain of watching them suffer indefinitely.  You have no formal training in how to take care of them other than “motherly instincts”, and that has often been questioned, so your confidence is shaky, at best.

        21.  It is hard when school starts and everyone else’s child goes about their business, and you are still trying to find a place where your child will “fit in”.  It makes you feel sometimes like someone from “outer space” (or that your child is an alien of some kind).

        22.  People sometimes look at you strangely because of your child’s behavior or looks.  That never gets any easier to deal with, no matter how old the child may become (In fact, it gets harder as they get older.)

        23.  Fear and dread of the future may plague you.  You think “What will ever become of the child if he can’t fit into a school setting or into society”.  You pondered over what will happen if you should become ill or incapacitated, or even worse, should die.

        24.  Watching them grow up and get older, each birthday becomes a little harder.  You may find yourself dwelling on what “might have been.”  Excerpt from another letter I wrote my parents when Ben was little: “Thanks for the compliment on the kids and how they behaved. You know, I think I need be to reassured that they do pretty well, as I know some of Ben’s rituals do get mighty annoying.  I don’t think people realize how “old” they get when you deal with them day after day, week after week, and year after year.  I’m sure thankful that you all accept him and love him for himself (the way he is)!

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