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


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

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

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

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

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

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

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

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

 

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


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

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

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

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

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

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

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


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Ben’s 54th Birthday 7-4-16

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

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Ben’s Memory–He NEVER forgets anything!


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

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

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

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

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Good News About Ben’s Health


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

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


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

 

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Johnny (5), Ben (10)

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

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

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

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A 2015 Christmas Blessing by Carole Norman Scott


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

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

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

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

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

 

 

 

 

 

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