Everything changes–Ben’s meltdown at Christmas! By: Carole Norman Scott


Ben-brownies-2017

Everything changes…we have been blessed to have our fifty-six year old autistic son, Ben, be able to come home several times a year for week-long visits for 43 years.  Several other times a year, we visited him in Conway and took him out overnight to a hotel and to dinner, so we all could just enjoy being together.  FORTY-THREE YEARS!  Just think of it…from age 14 to age 56…he came home and went right into his “home” routine, and then back to Conway, and back into his Conway routine…never faltering, always happy to be here…to do whatever we did, to see relatives, and to relax  “at home”, and then to go back.  My husband and I are both 80 years old now, and don’t quite have the “resilience” we once did to keep up with it all like Ben does.  We notice though, that he is changing as he ages too.

This Christmas seemed different from the start.  I went with Jay to get Ben because we were already in Ft. Smith (which is 2 hours closer to Conway).  Ben was glad to see us, and all seemed well.  Then, on the way home, my purse got left at Clarksville, AR and when I missed it, we had to turn around and drive 10 miles back there to get it, so 20 miles was added to our trip.  (Luckily, some honest person had turned my purse in, and ALL was intact…money, credit cards, insurance cards, and driver’s license.)  Anyway, we got home safely and rested, but we heard Ben up in the night…opening and closing his chest of drawers.  He has NEVER gotten up in the night while at home, so that was unusual.  I noticed the next morning that he had changed pajamas several times that night.  We said nothing about it though, and went on to Church and Sunday school.  We had recently joined with another Sunday school class that is much bigger, and meets in a different room than before, so I could tell that didn’t quit sit well with Ben.  However, he was a trooper, and all went well.  We went out to eat on the way home, and he got his favorite…pancakes, bacon and scrambled eggs.  Then he took a nap after we got home.  All our family (Ben’s sister and brother and niece) were coming for Christmas the next day, so I had been working around that afternoon, getting ready for company, and was tired by the time he awakened.   I noticed that Ben seemed different…and that he might be having an impacted bowel and that, in turn, was affecting him in other ways.  I saw that evening that there were several outfits in his clothes hamper…jeans, t-shirts, undershirts, underpants, and even socks.  He had changed the WHOLE outfit when his jeans were accidentally lightly soiled due to his physical problems.  When I said something about that to him, he started hitting his face with his hands (not his fists)…and getting quite upset.  We knew there was always the chance for this to happen, as that was the reason he had to move away from home in the first place at age fourteen.  He had upsets that we could not physically handle then, but it had NEVER happened before at home since he had moved away. So, like his periodic seizures that we had never witnessed until recently, it was a shock to behold and it was scary, because again, like the seizures, you don’t know how it will manifest itself…will it be contained, or will it be a full-blown meltdown?  Ben is big (5’10”, 210 lbs, and I am little 5’1”, 125 lbs.).  My husband is not a match for him when he is upset, so we would not be able to combat or contain him once the sequence is started.  I left the room and was going into his closet and started to tell him that some of these clothes were not soiled, and could be worn, and then I saw him coming into the room, and he grabbed my arm as if to stop me, but he also pushed me, and I lost my balance and fell, hitting my right knee against the woodwork of the closet door.  It hurt terribly at the time, and I lay there.  I called for my husband (who was in the living room and knew nothing of the commotion).  Unfortunately, you cannot hear from one end of our house to the other, so he did not hear my call.  Ben knew that he had done something in his upset that he did NOT mean or really want to do.  When he saw me fall, he began again to hit his face with his hands.  I heard myself saying, “Ben, it’s OK…it’s OK” (not that he pushed me, but that he needed to calm down).  Then, by the Grace of God…I said, “Lay down on your bed!”  He looked relieved, and DID lie down.  I was able to get up then, and go into the living room, leaving Ben on his bed.  A few minutes later, I went back in, and he was standing, facing me as I walked in.  I stretched out my arms to hug him, and he opened his arms too, and we hugged.  Then, he pinched my shoulders with his fingers, and I quietly said, “Don’t hurt me Ben.”  He let go and we continued to hug.  He was OK from then on, and never soiled his undergarments again (and never had before).  WHO KNOWS what was going on…only God, and He hasn’t revealed it to me even yet.  Ben slept well that night (no getting up)…and I applied ice to my knee…knowing that all the company was coming the next day, and I HAD to be able to be “up and going!”  I was able to do everything I needed to do but, my leg had multiple bruises, and looked really bad.  Three weeks later, it got puffy, and today, six weeks after the incident, two doctor visits and 5 x-rays, it is still puffy, and I’m still using ice on it.  That’s SO much better though that what COULD have happened…the possibility of a broken hip, hospitalization, and weeks of therapy to be able to walk again (OR, hitting my head on a 24” wide table insert that was stored in Ben’s closet)!

All this has made us take another look at Ben’s future and our place in it.  It has been a sad turn of events because this had never happened before and may never happen again, BUT, if it DID, what would we do, and who could help us, and what would happen to Ben.  The police are not well-enough trained about autism at this point to handle a grown autistic man who is in the middle of a meltdown, and they might even take him to jail if he didn’t do exactly what they told him to.  Ben probably would not, as he doesn’t understand or perceive all the rules and regulations of society. The police don’t realize that about autism, that they are “out of control” at that particular moment, but will be OK if they are given time and reasonable restraint.  It is all SO hard to understand.  Ninety-nine percent of the time, Ben is a gentle and good-natured man.  But, when something is triggered, that can be really hard, if not impossible to handle.  Our next time to go and see Ben and take him out in Conway is in April, and a home visit will be due in July.  We are praying and seeking God’s guidance in these endeavors.  Was this episode a gentle warning that times have changed for Ben?  I’m SO glad I have kept scrapbooks of his visits home through the years, and can look at his happy face, and know that we have done ALL we could to keep him a part of our family, and to let him know that he is loved!  We will do all we can to keep that going in his life…as much as his disability allows!  God has been SO good to let us have 43 years of joyous times.  There have been many sad things in-between visits, but the time at home was “special!”  Oh Lord, have mercy on your servant, Ben!

 

 

 

 

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A “Bland” Diet for Ben!


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Ben at the restaurant watching the waitresses carry the food in!

To bring you up to date on the latest medical decisions that have been made for Ben at the facility where he lives…he had an EGD to check his Esophagus for ongoing Barrett’s syndrome  (pre-cancerous condition of the esophagus) on April 20th, 2018.  The biopsy came back negative (GOOD).  We thought that was it, considering it was such good news.  Then, it was suggested at his facility that he be put on a “bland” diet, as the EGD had also shown gastritis of the stomach, and that could cause the future threat of cancer if his esophagus became inflamed.  Soooo, even though as his parents and guardians, we felt that was an extreme measure, they put the bland diet into action “cold turkey!”  What a shock to Ben’s system…whose greatest joy in life was to eat what tasted good to him (which included many things that can cause gastritis of the stomach…pizza, coke, rich foods, etc.).  They said he handled the change bravely…but when he came home for a visit in July, he looked into my eyes intently with a pained look, as though to say, “What is happening to me down there?”  We changed his birthday cake to comply with the diet (no chocolate), and again, he looked at me/us like, “This is NOT what I expected or wanted!”  It is SO hard that he not be able to enjoy the few things that make him happy, even if it IS best for him.  

The second thing he is dealing with is that his right hand is shaking profusely with a tremor when he lifts it to take a drink of water (or any liquid when taking his pills).  He was to see the Neurologist at his facility today (August 20th, 2018), but the computer system there is down, so that has been postponed.  That is of great concern to us, since he takes many meds…three different ones for seizures, plus others.  The dosages and interactions need to be checked, and quickly.  All we can do is pray–“Dear Lord, thank You that You have ALWAYS been looking out for Ben, and You will continue to…Your timing perfect.  Be with Ben…comfort and keep him always…giving him peace in his “toilsome” world.  Please soothe a mother and father’s aching heart for their loved one.  We praise & thank You most high!  

 

 

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Autism: ‘Tis Still A Puzzlement: Christmas, 2017 By: Carole Norman Scott


Santa Puzzle--2017

       On Friday, December 22nd, my husband (79) made the 4 hour drive down to Conway, AR to pick our son, Ben (55), up for Christmas, and they drove the 4 hours back in a hard rain…but got to Tulsa safely! 

Ben-brownies-2017

       On Saturday, Ben helped me make brownies, chili, and home-made potato soup for Christmas Day…when our daughter and two granddaughters and our younger son would be here to celebrate… not only Christmas, but our up-coming 60th Anniversary (January 18th).  On Sunday morning, we attended our Church’s service (which was wonderful & unique), and then rested up that afternoon for the arrival of our family. They got here about 3:00 pm, and that evening, we went to a nice restaurant, and they treated us to a lovely dinner.  Ben was truly a perfect gentleman both places.  At the restaurant, he unrolled his silverware, and put the cloth napkin in his lap.  How did he know to do that?  They don’t really eat that “fancy” where he lives (although they do wonderfully well).  He wiped his face with the napkin when needed (of his own accord), and one could not have told that he had any autistic problems at all from his behavior or demeanor. WHAT A BLESSING!  It hasn’t always been that way.  He was calm and peaceful, and has been every day since.

 Family pic--2017-McGill's

       We have been shopping at the Mall, have eaten at the “food court” (where there were hundreds of other people eating and milling around), have walked all over the mall, looked in stores, and carried packages.  He says “nary a word,” but follows close behind me, as he has no idea where he’s (or I’m) going next.  I tell him, “You’re the best shopper in the”…and he finishes the sentence saying what’s he’s heard me say, “whole world!”

     Santa Puzzle--2017

       In the afternoons, he takes a 2-hour nap (because the meds for seizures make him sleepy)…so I can rest then too.  He loves to eat, and will eat most anything.  At the restaurant, he even ate the broccoli in his steamed vegetables (a first)!  He loves to work puzzles and just finished this 200 piece “Santa” one he got for Christmas.

       That helps to keep him occupied and happy too!  I can’t even express what a joy it is that he can still come home for visits and be a part of our family.  He loves coming, and I find that I feel “complete” when he’s here.  We deal with the separation because we have to…but deep inside there is a longing that is fulfilled in all of us with each visit.  Praise God for His Blessings!

 

 

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Our 10-24-17 Visit With Ben


We drove to Conway, AR and took Ben out overnight at a hotel.  We all went out to dinner at Chili’s and he got his favorites…chicken fingers, mashed potatoes & gravy, and corn-on-the-cob!  Then, we went to McDonald’s and got a hot-fudge sundae for dessert–Ymmm!  He had a grin on his face the whole time.  Afterwards, we went back to the hotel and watched the first game of the World Series.  He really enjoyed that, and I could see that he was truly paying attention to how they hit the ball and caught it, and was actually getting into the essence of the game.  Here are some pictures to prove that he was relishing it just as much as we were.  What a blessed time.  We were missing him so, and he, in turn, was VERY happy to see us.  At our age (my husband and I are both nearing 80)…we are so thankful to be able to drive the 4 hours there and back, and to check to see that Ben looks well and healthy.  The first picture is Ben and his dad, followed by Ben and his mom (me).  Then, Ben winking at me, and last, Ben watching the ballgame!  It was a GOOD visit–PTL!

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Another Blessed Christmas–2016!


I just want to praise God by telling that Ben was home for eight days at Christmas (December 23rd to 31st–2016), and did GREAT!  There were some changes that he negotiated with grace and calm (answered prayer).  He was in a different bed, and in a different room than usual, and didn’t seem to mind at all.  He slept well, really enjoyed the “eats” (especially the grilled cheese sandwiches and nestle’s quik). He doesn’t get to eat like that at his living unit because of cholesterol problems.  We’ve been told to let him have what he enjoys while at home though, because just a week of it won’t hurt him.  We went to a movie and shopping, he worked a 300-piece puzzle all by himself (he enjoys that accomplishment), got to see his sister, brother and niece, went out to eat, opened presents, and just generally had a good time.  What a blessing!  Lord, we can’t thank you enough!  My husband, even at age 78, drove 4 hours to get Ben, and 4 hours back home…all in one day.  They had a good time listening to music on the way.  Ben enjoys that too.  At the end of the visit, my husband made that same trip again.  What a FINE man and father he is!  I am blessed!  Here’s Ben with his finished puzzle!ben-puzzle-xmas-2016

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


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

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

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

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

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

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

Ben has been treated at the Little Rock University Medical Center many times for various physical ailments (EEG’s, Esophagus problems, etc.), and we are thankful it is so close, and that he gets such “expert” care.  Before I started my Chemo, I went down to see Ben because there wasn’t time to bring him home before I was to begin the treatments.  I very plainly explained to him that we were going to do this visit differently because I was going to be taking some medicine that would 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 always listening to what is being said, and is taking it all in.  It amazes me how much he knew…even as a child, but was not able to communicate it to us.  Here’s what I found:

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

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

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

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

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

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


Ben by himself 7-4-16

Ben’s 54th Birthday 7-4-16

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

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Ben’s Memory–He NEVER forgets anything!


famxmas2015benS

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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