Ben’s Childhood Characteristics–And Improvements As An Adult

 1. Resists normal teaching methods—

 As a child…

            We tried for years to show Ben how to tie his shoes.  He wouldn’t watch, his gaze was averted, and he seemed either lost in his own little world, or genuinely disinterested.  His fingers were as limp as wet noodles (we called it “spaghetti fingers”).  We actually had to take his fingers in ours and hold them around the shoelace to make them work.  No one would have thought in a million years that he was paying any attention at all.  When he was eight years old, one day he came down the stairs from his bedroom, and he had tied his shoes all by himself…like he “could” have done it all along. Also, when getting on the elevator, we always gave Ben the option of pushing the button for the floor we wanted to go to.  He knew his numbers, so we didn’t think it would be a problem.  WRONG!  If you told him to  push six, he would push EVERY number EXCEPT six.  This showed you that he DID know which one six was…as he couldn’t miss it consistently otherwise.  This happened over and over…with different numbers…so who could explain Ben’s “reasoning” of the situation?

 As an adult…

            Ben follows instructions SO much better.  There are still grave perceptual problems, but he truly tries…by listening closely and paying attention to what is ask of him.  Recently, he opened the refrigerator to get the orange juice out.  The milk was in front of it…covering it up so it couldn’t be seen.  I told him that it was behind (an elusive concept for him) the milk.  He looked a little panicked…like he couldn’t figure it out…then moved the milk and found it. He seemed SO pleased with himself.  Jay asked him one day to go upstairs, get his billfold off the chest of drawers, bring it downstairs and into the office room (four things).  Ben was able to follow those directions perfectly.  He doesn’t however, like to be shown over and over how to do something.  It’s like it makes him think he didn’t do it right the first time, and that he is being “fussed” at!

 2.  Inappropriate laughing and giggling—

 As a child…

            Ben laughed and giggled to himself like he had a joke that no one else was “privy” to.  We would ask, “What are you laughing about Ben?”  He would answer, “Laughing about giggling!”  If we said, “Ben, what are you giggling about?”  He answered, “Giggling about laughing!”  One day, when he was into his teens, I took him shopping with me.  I let him sit in a chair close to the entrance to the store while I looked at garments on a rack close by.  Pretty soon, I looked up and two elderly ladies were coming in the door and were looking towards Ben with horrified looks on their faces.  I couldn’t see Ben from that angle, so moved quietly to where I could.  He was tickling himself on his ribs like a chimp and was laughing so hard that the vein in his forehead was sticking way out like it was going to pop.   I didn’t try to explain anything to anybody! To me, it wasn’t near as bad as it could have been. In Church, he would suddenly start giggling uncontrollably, and we would have to get up and leave with him (at least for a short while).  Eventually, he got to where I could just lay my hand on his leg when he started to giggle, and he would then struggle to “sober up.” As we walked to the parking lot after church, he would then say, “Good boy in Church”…repeating a commendation I tried to give him often!

 As an adult…

Ben, and his sister, Maureen

He doesn’t do anything “strange” anymore that calls attention to himself.  We go shopping all the time and eat at the mall, and he is a perfect gentleman.  He waits until I am seated before he starts eating…then wipes his mouth with his napkin after each bite.  He loves to go to church with us, and now he sits quietly and listens to the music and takes in all the beauty of the Sanctuary.  Several years ago (when Ben was about 35), he came home for Christmas with us.  He took part in the festivities and sat and observed his little nieces opening presents just like any other doting uncle would.  It was almost as though he was reliving the childhood that he had missed out on due to his condition.  His sister, Maureen, came to me privately and said, “Except for the fact that Ben doesn’t carry on a conversation…in a group, you can hardly tell anymore that he has any kind of a problem.”  Several days later, his brother, John, (who hadn’t heard Maureen’s remark) called me aside and related the same observation about Ben.  For his two siblings to BOTH come to that conclusion at once, was indeed an affirmation of his progress in ALL areas!

 3.  Echolalia—

 As a child…

            When you would say “Hello Ben,” he would answer “Hello Ben.”  He would say “yes” to every question he was asked.  But, if after a series of questions answered as “yes”,  you kidded him by saying, “Ben, do you want to jump off the Brooklyn Bridge?”…he would catch himself and finally say, “Noooooo!” He  would repeat, “You can have a cookie”…instead of “can I have a cookie?”  He repeated  lots of TV commercials instead of using conversation (i.e. Ben’s diary).  They were thrown in inappropriately and made no sense to what was being discussed at the time. He also made a lot of strange noises that no one (but perhaps him) knew the meaning of, and he certainly wasn’t letting the “cat out of the bag!”  He would put his hand up to his mouth, as if to guide the sound towards his ear and make a “Guyooooo” noise (sort of a “moaning” sound).  He frequently repeated the phrase, “Dinga, La Ding, Dingala” (which again,  was like a foreign language as far as we were concerned).  If unhappy, he would run through the room like a whirlwind, making a loud “Whooooosh” noise in a troubled tone!  These odd sounds and noises lasted years at a time…day after day, week after week, and month after month.  They weren’t just isolated incidences.  I got to where I felt like if I heard ONE MORE “Guyoooooo,”…I would do something DRASTIC!”  It began to affect my senses like “fingernails on the blackboard!”

As an adult…                                                                                       

Me and Ben–age 38

Ben has moments when he catches himself about the repeating. He has had several grand-mal seizures in the last few years, so doesn’t talk as much as he even used to (he tends to stutter when he tries), but several years ago I said (as I have all through the years), “I love you Ben.”  He answered (in his mechanical way of speaking), “I love you B —“(starting to repeat exactly what I had said to him)…then caught himself …bent way over and looked me straight in the eyes, and said, “I love you Mom!”  That was definitely music to my ears, and worth a VERY long wait!  More recently, we went shopping, and I think he would shop until he dropped!  He is not like other men who stand on one foot and then the other…waiting for you to get through and go home.  He loves being out with the people (as long as they don’t bombard him with questions he can’t answer).  On the way home, I said, “Ben, who’s the best shopper in the whole world?”  Immediately he answered, “I am!”  That was exciting, because he called himself “I” instead of “you,” and seemed to take great pride that I had given him a compliment!  He is my “shopping” buddy, and a delight to have along!

 4.  Acts as if deaf—

 As a child…

            Ben would hold his ears quite frequently. We never knew if he heard so extremely well that noises hurt his ears, or if he was hard of hearing.  He didn’t pay attention to the same things that other children do. He was known to be as extreme as to act as though he didn’t even hear a jack-hammer tearing up the street as we drove past…never even turned in its direction to see what was making the noise.  Conversely, he could definitely hear the rustle of a candy wrapper from across the room.  Who could tell?  Then, while we were on vacation, we decided to stop along the roadside and have a picnic and unbeknownst to us, a nest of hornets happened to be in the tree above us.  They started to swarm and Ben ran away from them saying, “The buzz will get you…the buzz will get you.” That was a sentence of his own making!  When in a pinch, he seemed to be able to express himself fairly well!

 As an adult…

            His ears STILL seem “extra-sensitive,” but he does NOT hold his ears or act like he is deaf anymore at all.  If you try to point out some area of interest to him however, he STILL does not turn his head and look at it like other people would.  He is able now to tolerate the noise of crowds…like at the Flea Market, movies, or Church…without reacting negatively!  He LOVES music, and when we ride home from Conway, AR…seems to be able to listen to it at a pretty loud decibel with me.

 5.  No fear of real dangers—

 As a child…

Ben riding his pedal tractor

When we lived in Springfield, MO when Ben was 3-5 years old, our dead-end street was opened up in order to build more houses.  That brought more traffic to our area.  We hadn’t really had to worry too much about it up to this point.  The existing neighbors were all watchful for the children and since there were no sidewalks, they played often in the street.  This was to be no more…with the arrival of new neighbors who were not familiar with Ben and his antics.  I tried my best to get it through his head to stay out the street (or at least to move to the curb when he saw a car coming).  He seemed to have no inkling of the “cause and effect” relationship between cars and severe injury…and when a car stopped for him, he would even stay in the street, get off of his pedal-tractor, and circle the car…looking at the shiny chrome headlights and tail lights.  This angered more than one neighbor, as they had NO idea of what Ben’s limitations were in the “perception of danger” category.  I had to resort to saying, “Ben, the cars will run over you and smash you, and it would hurt REAL bad!”  Even this made very little impact on his overall understanding of the situation.  Spanking, scolding, reasoning were ALL to no avail!  He changed my admonition to, “The cars will run over you, and smash you, and kill you, and it will hurt REAL bad!”

 As an adult…

            We take walks frequently when he is home and he can hear a car coming more than a block away, and quickly gets up on the curb, scurrying for safety.  We don’t know where or when his perception changed…but are SO thankful that it did.  He is VERY careful getting on the escalator…taking that first step on to it.  He realizes now that the stove can burn you…that bowls just warmed in the microwave oven are still hot…and that dogs can bite you!  He is not as “trusting” as he used to be…all to his credit and longevity!

 6.  Apparent insensitivity to pain—

 As a child…

            When Ben would get really upset and frustrated, he would bite his own wrist, sometimes even breaking the skin.  He has done this over and over through the years, until he has really bad scarring on his arm.  Once, when he had an ingrown toenail and we had to have it treated at home, the doctor came into the room, and without a word of explanation (to me OR Ben) proceeded to quickly clip Ben’s toenail off clear back to the quick.  I was appalled, and  Ben looked startled, then tears came to his eyes, and he offered, “You can cry” (meaning that it was OK for him to cry…or even, was it permissible to cry)?  If he had a headache, he just laid down on the divan with his face in a pillow…as if to “block out” the pain.  I finally learned to “read” when that might be happening.  He would wear a heavy coat or sweat-shirt out in the middle of a summer’s day if you didn’t keep a close eye on him.  It didn’t seem to register that he was hot or cold.

 As an adult…

            He learned to come to me when he had a headache and I could tell by the look in his eyes that he was hurting.  I  would give him an aspirin and that seemed to take care of it.  He still never said, “I have a headache.”  He will sometimes finish the sentence if you say, “Do you hurt Ben?  I hurt in my —-”  He will add “head” or “stomach”…or whatever is appropriate to his discomfort.  He still essentially goes off  to bed by himself if he is sick or hurting…like a little animal that retreats to his “den” to nurse his wounds.  Thankfully, he has been SO healthy, that he has not experienced a lot of illnesses in his time.

 7.  Crying and tantrums…extreme distress for no apparent reason—

 As a child…

Ben at age 8…not happy!

Ben seemed constantly troubled.  He didn’t enjoy playing and relating like other children.  The smallest thing could set him off…and we never knew why.  It might be that there was a slight change in the plans, and that “fouled up” his perception of the event taking place. He threw tantrums, occasionally hitting or biting people that came in contact with him during those episodes.  I remember one day in particular (when we lived in Ft. Smith, AR) when he was about ten years old.  He was in a terrible mood that day, and I finally went outside to take a walk around the circle of houses on our block, just to get out of that atmosphere.  It was a beautiful day, and I remember thinking, “How can someone be upset over NOTHING…on a day such as this?”  I never had an answer to that question.  About that same time period, we were shopping at Sears, and he suddenly decided that he wanted to go swimming in our next-door neighbors pool…RIGHT THEN!  He started throwing a fit, and I somehow got him out to the car before it escalated completely out of control (he was getting big, and was VERY strong in the midst of a “wing-ding”)!  Our daughter Maureen’s comment was, “Boy, we really woke those people up!  They were having a boring day until we came along.”  I was glad she could be so philosophical about it at age twelve..  For me…it was NOT that cut and dried!   The tantrums  got worse as he reached puberty, and are the reason he had to move away from home at age 13.  Although he was not fully grown, he was strong, and we could not physically manage him when upset.  This was in 1976–SO HARD!

 As an adult…

            Ben has had only one upset in our home since he moved away when he was thirteen years old.  Shortly after he had moved away, when he came home for a visit, he bit his younger brother John, on the arm.  I called my husband…explained to Ben that that was NOT permissible, and that he could not act like that in our home.  As hard as it was, my husband took him back to his “home away from home” right then and there.  He has come home for visits four and five times a year (for a week to ten days at a time) ever since (35 years) and has NEVER had another upset.  They do, however, still happen where he lives periodically.  It can be rather chaotic there, and the noise and confusion…along with other clients sometimes getting upset, seems to trigger the same behavior in him.  I have never felt afraid when he is home…Ben goes everywhere with me/us that I/we go…meets people, sits through church and meetings, goes shopping, etc., and seems to handle whatever comes his way…again, as long as no one is barraging him with questions he can’t answer, he’s OK.  One time at the mall, I noticed people looking towards him as we walked along , so I glanced side-ways at him to see what they were looking at.  It was only that he was smiling radiantly, anticipating the pizza and chocolate-nut cookie that he would be “treated” to at lunch, I believe!   To the people observing his smile, they could not imagine that anyone could be so happy…just shopping at the mall!    7/25/14–I would be remiss if I didn’t add here that the upsets have continued and are happening even as I write…at his living facility. He has periods of sweet calmness, but also has periods when nothing seems to go right (in his perception anyway).  We wonder if at age 52,  he doesn’t feel as well, and has less patience to deal with things he doesn’t understand and can’t communicate to others.  Still and all…for the life he’s had to live…overall, he copes very well most of the time, and has been a gentle presence in our lives during his visits home.  PTL!

 8. Spins Objects—

 As a child…

    Ben would lay on the floor rolling his little cars along, watching only the turning  wheels.  He seemed oblivious to ALL else that took place around him.  He did not “pretend” like other little boys do…but only watched the spinning of the wheels…as though fascinated by the rotation! 

  As an adult…

            Ben still likes cars…or ANYTHING with wheels…but it is in a more “normal” fashion.  He especially likes to go riding in a car, (and his job is to put the key in the ignition and start the car…but only when with us), and would travel to the ends of the earth, I believe…and be happy all the way.  When I go to pick him up for a visit home, he looks straight ahead as we travel, but “risks” a sideways glance at the semi’s rolling along beside us…even yet watching the wheels turn and spin.  There is a smile on his face…as if remembering in the recesses of his mind, the fascination he had as a child with the wheels going around…but even yet keeping the reason for it a secret hidden deep within.  Of course, a semi IS a “sight” for Ben’s sore eyes…in that it has so many wheels “whirring” at once.

 9.  Not cuddly—

 As a child…

     This is one trait that Ben did NOT fit early on.  He was a cuddly baby and little child…but DID become “aloof” when he began to go into his “retreat” when three years old.  He would then allow you to hug him all right…but NEVER initiated it himself.

 As an adult…

Ben at 27

At Christmas, 1989 (Ben was twenty-seven years old), he held me real tight when he hugged me before leaving to go back to Arkansas.  He patted my back while he hugged me…of his own accord.  Since then…to the present time, he is very loving when he comes home for visits.  The day he leaves, he has a different look on his face towards me…gives me a special hug and even a  kiss…all of his own doing.  It’s almost as though he is trying to reassure me that he will be OK…that he knows it will be a long while before he sees me again…and that he’ll miss me.  His “look” says volumes!

 10.  Sustained odd play—

 As a child…

            For years, Ben played with a rope…flipping it into intricate designs that seemed to give him some kind of a “special” thrill.  If we took the rope away from him, he would find a shoelace…or even ravel a small thread off of a piece of cloth somewhere to use in the same manner.  Finally, I bought him a leather, braided whip (like one you find at a carnival) to flip to his heart’s content…as it looked a little more like an appropriate play object for his age.  He loved it…and made all sorts of designs in the air with it. This went on for at least four years without missing a lick.  Also, he loved to kick the kickball up into the two-story tall elm tree in our backyard.  He had it down to a fine art.  He could manage to kick it “just so”…so that it landed in a certain fork of the tree branches. Then, when unable to get that down, he would get a softball and throw it up in the tree to knock the kickball down.  When that got stuck in the very same fork, he came in and got a hard baseball and threw it up likewise…until all three were in the same predicament.  My husband had to get the ladder to get them down.  Ben’s accuracy was uncanny as far as the “hand-eye” coordination was concerned.  It was as though he could have been a “place-kicker” for a pro football team…had he understood the game and the reasoning behind it all.  Likewise, when we bought him a basketball goal…thinking he might like throwing the ball at the goal…he did that a couple of times, making a basket each time…and then quickly lost interest…as though he failed to see the significance of continuing something he could already do so well!

 As an adult…

Ben working his puzzle

Ben has graduated to quieter and more reasonable hobbies…like working puzzles…he is a “whiz” doing jigsaw puzzles and could probably work a 1,000 piece one, but we never have that long a time for him to sit still.  Instead, we have limited them to 200 and 300 pieces, but he sticks with it, and seems to enjoy it thoroughly! He is now able to work on it a little, and then get up to go shopping, etc., and work on it again later.  He also loves to listen to music, watch TV (he particularly likes nature or animal movies…or cartoons)! He loved to swing…and did that for hours at a time at his place of residence…in Arkansas.  They have huge swing sets that will hold an adult safely, and he would swing to his heart’s content…which was excellent therapy!  (He has huge calf muscles in his legs just from “pumping”). Alas, he broke his arm (we think when he had a seizure while swinging), and does not EVER go near the swings anymore.  That makes me sad for him…he enjoyed it so!  Also, he now (at age 48) recognizes ALL the forms of sports on TV, and can tell you which one is which…baseball, football, golf, etc.  He seems to enjoy watching the games just like any other man would.  AND, he LOVES “American Idol,” and “Dancing With The Stars!”

 11.  Difficulty in mixing with other children—

 As a child…

Ben at the neighbor’s pool–9 yrs.

Ben didn’t join in—he would lay on the patio and roll his little cars back and forth and suck his thumb…seeming to pay absolutely no attention to what the other children were doing.  When he started Preschool, the teacher said he was still pretty much a “loner”, and Kindergarten didn’t seem to make him “blossom” much more.  It was as though he was in his own little world. At the neighbor’s swimming pool, although with a whole group of neighborhood kids, he stayed in the corner of the pool…his back to the other children, and flipped water from the pool up onto the concrete that surrounded it…again, seeming to make intricate designs with the falling water drops.

 As an adult…

            He loves to go visiting and to be in crowds.  That doesn’t seem to bother him at all.  Although he still can’t communicate with the people he’s with, he at least seems to enjoy the camaraderie with them.  He has several jobs he holds at his place of residence, and he is a very good assembly line worker…which requires him to be with other people…but  he has his own “thing” to do…and is NOT dependent on “socializing” with the other workers!

 12.  Resists changes in routine—

 As a child…

            Ben woke up every morning of the world no later than 5:30am.  He would then proceed to go down to the kitchen and fix himself a bowl of cereal…or two or three!  It became necessary to buy a bicycle lock and put it on the cabinet door.  I would fix him ONE bowl of dry cereal the night before with a donut laid on top of it.  I would then cover it with saran wrap, and leave it for him to eat the next morning.  NOTHING could change that ritual as far as Ben was concerned.  I tried putting him to bed later so he would hopefully sleep later in the morning…he didn’t.  I tried refusing to give him cereal, punishment, rewards…NOTHING helped!  That’s why we finally had to settle on the lock on the cabinet door (which he called “keys locks”). 

 As an adult…

            Ben is able to take most anything in his stride now.  Especially at home, he “goes with the flow.”  They say he is still more “ritualized” at the Colony…but I think that’s because they go more on a schedule there, and he has come to expect certain things.  We have a schedule “of sorts” when he is home.  We eat breakfast, get cleaned up and dressed (he can take his own shower…with a little supervision), go out shopping or to a meeting, etc., and then come home and rest in the afternoon.  He usually takes a nap…even as an adult, because he is on several medications that can make him feel sleepy.  That gives me a chance to rest too.  He watches cartoons when he gets up, Jay comes home from work, we eat dinner, and then he works a puzzle or two.  Then, it’s time for bed, and we do pretty much the same routine the next day…only go somewhere, and eat somewhere different each day.  The only time he has ever gotten upset that we didn’t do something “exactly” the same way, was when I changed “routes” getting to a certain store that he knew we were going to…but he thought we weren’t going there, because I went a different way.

 13.  No eye contact—

 As a child…

            Ben took swimming lessons when we first moved to Fort Smith, AR.  The teen-aged boy that was his “mentor” was a kind and patient fellow.  He would try to show Ben how do to a certain stroke, and Ben would be looking the other way.  He would say, “Ben, watch how you do this.”  Ben would NOT turn his head in that direction, or even act like he heard him.  If I heard, “Ben, look here” once…I heard it a MILLION times during those lessons.  The young man never gave up though.  He would gently take hold of Ben’s chin, and turn his head towards himself manually.  With that, Ben would “fleetingly” cast a glance out of the corner of his eye.

 As an adult…

            Sometimes, when he is asked a question and is in the right frame of mind to try to answer it…he will bend over and look me right in the eyes, and gaze intently as he answers…like “pay attention, because this is the only time you’re going to hear this!”

 14.  Stand-offish manner—

 As a child…

            When he was just a little boy of two, when the whole family was opening the Christmas presents…Ben went off in the other room…all by himself, and would NOT come out where we were.  That was most disappointing…because little children are supposed to be excited about Christmas and their presents…and we were all looking forward to him reacting that way.

 As an adult…

Ben opening his Christmas presents!

Ben enjoys all aspects of Christmas now.  He opens his presents and is pleased with the gifts.  He watches the little girls (his nieces) and seems to relish all their excitement and wild “flurry” of tearing paper off packages, etc.  He shakes hands with people when he meets them, and will give a hug to those he knows well.


15.  Might not want to “kick ball”…but can “stack blocks”—

 As a child…

            Ben hardly ever wanted to do what the other children were doing.  He was happier “doing his own thing.”  I think I have given many examples of that type of behavior already…at the swimming pool…learning situations, etc.  It never seemed to be a case of that he couldn’t do a certain thing.  It was always more like he wouldn’t do it.  Because, when he finally did do it, he did it like he could have done it all along…as well as anyone else could do it (and sometimes better).  But on the other hand…it wasn’t like he was just being “stubborn” either.  There was a problem of the brain not circuiting the desires and commands properly I would say.

 As an adult…

            Ben is still very much his own person.  He marches to a different drummer.  He may not be able to read and write (although no-one knows to this day for sure), and carry on a conversation…but he can chamois off the car to a “fare thee well,” run the sweeper, make a bed, and put the dishes away out of the dishwasher like no-body’s business.  What he does…he does well, and thoroughly.  It is still like…if he decided that it was important to read and write…he could do it (although I’m not convinced of this).  We don’t know though…those things don’t seem to be important to him…he doesn’t seem to see what the connection is between doing those things and learning, etc.  It is MOST puzzling!

 16.  Inappropriate attachments to objects—

 As a child…

Ben in bed with his stuffed “pals!”

Ben loved cartoon characters in the form of stuffed toys.  That’s not too unusual for a little child, but Ben carried it to extremes…and for years at a time  He would do strange things with them…like throw the Raggedy Andy doll he loved dearly up into the tree to see where it would land…over and over!  As I mentioned earlier, he played with the “whip” that he made intricate designs in the air with, and kicked the ball up into the tree, etc.  He also had a collection of “soakie” toys (bubble bath containers shaped like cartoon characters).  He wanted to take them all to bed every night, and there was hardly any room left for him.  Nothing could change his mind on the subject…he would “wail” like he was being maimed if they weren’t all there in a row.

 As an adult…

            He now enjoys going to the Flea Market with me and I see him “eyeing” some cartoon character objects from afar.  He still relishes them and enjoys watching the cartoons on TV, but he has graduated to more mature ways of showing his interest.  I have started a collection for him in the room he sleeps in at home of his “old” pals (but on a shelf, or in a basket).  I even got him some Mickey/Minnie Mouse and Goofy flannel sheets…figuring that our little granddaughters could enjoy them too when they are here.  He loved them!  One time, I surprised him and bought him a “Hulk” figure at the Flea Market.  He took it in his hands and held it up in front of his face for the longest time..studying its features and “whatever.”  I was amused at how he enjoyed it…without doing anything too “juvenile” with it.  We put it on display in his room for him to enjoy!

 17.  Marked physical overactivity–or extreme passivity—

 As a child…

            Ben could not  sit still or “stay put.”  When he was about four years old, we went to Sears, and I was trying to pay for something and missed Ben.  We looked everywhere, and were beginning to get very worried, when we heard some “faint” giggling.  We followed the sound, and found Ben snuggled in a sleeping bag in their “Camping and Tent” display.  He was having the time of his life…giving “nary a thought” to our concerns for him.  At his school, that was a complaint the teachers had about him…that his attention span was so short (or that he was not “tuned in” to what was expected of him).  The “passivity” showed up in many ways…but the overall effect was that he seemed to have no joy in normal childhood activities.  THAT covers a   lot of territory!  On the other hand…certain things held his attention much longer than other children.  One time, he was sitting…looking into space like he was thinking deep thoughts, and all of a sudden, he said, “We don’t haaaave any tootsie-pops!”  No one knew where that came from…but it was clear that he wasn’t thinking the thoughts we thought he was thinking!

 As an adult…

             Now, Ben is able to go most any place and sit through an entire church service, movie, or meeting…drawing NO attention to himself because of  “odd” or “childlike” behavior.  He is still passive about many things we deem “important,” but we have come to realize that his perceptions of situations is just not the same as ours.  If  I had to describe autism…I would make “perceptual problems” one of the first considerations…because that problem seems to govern SO much of the other behavior.  When Ben was a teenager, I was taking him back to Conway from a visit home in Tulsa.  We stopped in Fort Smith (where he had grown up), to stretch our legs at the mall for a while.  He wanted a drink of water, and knew where the fountain was, so I told him to go on and get a drink.  I turned to make sure he had gone where I thought he did, and the sight that I beheld made me chuckle to myself.  The fountain had two brick steps leading up to it so that little children could reach it, and Ben had gone up those steps…just like he did as a child…and was bending WAY over…with his rear-end way up in the air…getting his drink of water.  It had not occured to him that he had grown up, and was now 5 ft. 11 in. tall, and that he didn’t need the steps anymore.  He was doing it as he always had…THAT was the way to do it as far as he was concerned.  His perception of himself as a grown-up man had not “clicked in” yet.

Also, when we go to the mall, when I go to the restroom, he knows to always go in the opposite one that I do, because I motion for him to.  I had already found that the signs on the door saying “men” and “women” have absolutely NO meaning to him.  Recently, my husband and Ben were heading towards the men’s restroom at church, and Jay naturally assumed that Ben was following him.  He turned just in time to see Ben starting into the women’s restroom…and of course was “mortified.”  I thought that over, and explained to Jay that Ben didn’t see any difference when he was with Jay than when he was with me…he STILL thought he was to go into the opposite room than where Jay went.  The male/female element has no meaning to him!

Ben’s 48th birthday, dad-Jay, brother-John

 I think the most important fact that I can leave with you is that you can only compare autistic people (or ANY person with any kind of a handicap) to how they used to be.  Ben has made giant strides in his growth in every area.  Compared to “normal” people…he still has a long ways to go.  But if you compare him to how he used to be…there is all the difference in the world!  We are SO thankful that he can come home for visits…that he knows who everybody is, and is SO glad to see us.  He is able to groom, dress, and toilet himself, and THAT is quite an accomplishment for an autistic person.  Thankfully, he had learned some of that before he started to regress at the age of three…and what he knew…he never lost!  Praise God!

About autism45

I am the mother of a fifty-nine year old autistic son. My blog, autism45, contains journals, poems, pictures, photography, letters, and other writings and insights pertaining to autism and the spiritual growth we (my husband and I) have experienced from it all. I hope you will visit my blog, and benefit from all I have shared...all that has happened through the years. Take your time, and come back again and again. God bless you and yours! autism45.wordpress.com
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  1. autism45 says:

    Lulu, thanks SO much for the comment! Yes, that IS amazing! My husband’s name is Jay, and the sons are Ben and John, but STILL…that two of those names would be used is ironic. I appreciate being called a “loving” family. Sometimes, we’ve wondered, but I’m glad that it comes across that way. That blesses me! I’ll look up your book too!


  2. Lulu Delacre says:

    Dear Carole,

    What an amazing life story of such a loving family. I stumbled on your blog when I googled my latest book for autistic children, titled: Jay and Ben. I thought it was so peculiar that my characters have the names of your sons, that I couldn’t resist sharing this information with you.

    You have such positive attitude. My you keep enjoying Ben.



  3. Gary says:

    Can we drop a link on our site for this post? Many parents who have young kids affected by autism are unaware of what is possible for their kid’s future. This is a fantastic post to give hope for a better tomorrow.


  4. Deborah says:

    Dear Carole. I’ve learned so much by reading your blog. It’s amazing. You and Jay and Ben have clearly been through so much and yet somehow you manage to maintain such a great sense of humour and calm and acceptance through all of it. And the progress Ben has made is remarkable. Either he’s getting the help he needs at his home, or maybe he knows how much he is really loved.


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