Aggression Rears Its Ugly Head–By Carole Norman Scott–7/22/14


Ben & his dad (Jay) in the swing at home.

Ben & his dad (Jay) in the swing at home

Ben is having a really rough time right now…needing restraint, and generally NOT HAPPY! He has to have his big toenail removed next week due to an in-grown toenail and fungus. We need prayer that God will give all concerned wisdom and strength to endure (including peace for Ben). They are checking his Depakote & Tegretol levels, and the Psy. Examiner is going to talk to the Psychiatrist about the Keppra he’s on for seizures too. His hands and arms have tremors and they think one of these might be the culprit. He started the aggressiveness as soon as he went back from his birthday visit (and he was home for 8 days and did SO well).  My husband took him back, and when he was in Ben’s bedroom there putting some things away, Ben came into the room wild-eyed and pushed him (he’s 76), and he thankfully fell across Ben’s bed, but then bumped his head on the cement window sill. Ben has NEVER been aggressive with us or anyone here at home since he moved away so many years ago, but this scares us to bring him home again if he attacked even Jay (husband).  It dazed Jay at the time, and somehow, he was able to get around Ben and leave the living unit, but he had a 4 hour drive ahead of him.  He was pretty “shook up” when he got home (but DID get home safely)!  From Tulsa to Conway, AR…is 4 hours.  He had already driven 4 hours when this happened.  It was a scary experience, and he didn’t see it coming.  He’s had no bad after-effects—PTL!  I’m wondering if Ben somehow later realized what he had done, and is now upset about it, but that may not be the case at all.  I don’t think he pushed Jay because it was Jay…but when he gets in that state…it’s whoever’s in the way, so “WATCH OUT

Oh Lord, this opens a whole new problem…if Ben can’t come home for visits…how will we check on him, and what will become of him. We have been in a grieving mode (again, almost like he’s dead to us)…even yet knowing that GOD is in control, and has a plan that we just can’t see right now. God’s mercies are new every morning. Ben is 52 now, and we wonder if something new is going on in his body that he can’t tell us about. But, how does he stay calm at home if he can’t control it there? We are as puzzled now as we were 38 years ago when he had to move away from home. SO sorry if this is not encouraging to all reading…but it’s what’s happening. He would miss seeing relatives, going places — out to eat (and helping me with grocery shopping and fixing food at home), going to church, to the movies, and just being home and loved, etc. Oh Lord–have mercy on Ben and on all families dealing with autism. It is SO grievous, and SO hard to find the right help. Only YOU know what all it entails, and we beseech You to help us ALL in our hour of need–Hebrews 4:14-16 “For we have not a High Priest which cannot be touched with the feeling of our infirmities, but was in all points tempted like as we are, yet without sin. Let us therefore come boldly unto the throne of grace that we may obtain mercy, and find grace to help in time of need.” PS He just may NOT want to be at his Living Facility, but this lets us know for SURE that if we brought him home for long periods of time…we could NOT handle it if he got violent!  He was having trouble BEFORE he came home too!

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Pioneers in the Wilderness of Autism–By: Carole Norman Scott


Hooray! Just had my 15,785th person look at my blog (as of October 11, 2014), and they’ve visited it from 92 different countries! That blesses and astounds me, but I put the Lord in charge of it, and so I give HIM the thanks and the glory!

Ben at age 50.

Ben at age 50.

Living with autism has been quite an experience…one which has brought much sorrow, but thankfully, much joy too! As an adult, our fifty-two year old son Ben, has “mellowed” and reaches out to life in ways we never dared to dream he would or could, back when he was a child…he was so troubled then. He was seemingly “normal” until about the age of two, then began to regress, and soon displayed all the characteristic symptoms of autism.

Ben at age 2.

Ben at age 2.

He was diagnosed at age four. My husband worked at a college, and Ben was able to attend their “lab” pre-school and kindergarten that had many teachers’ aides.  He even had the added advantage of several Psychologists who could observe and work with him. However, even though they tried, they were not able to find the key to get through to him either. He did not relate to the other children or activities as hoped and needed, so was not able to move on in a regular school setting (even though he showed “glimmers” of high intelligence).

Ben's 4th Birthday!

Ben’s 4th Birthday!

From age seven to thirteen, he went to The Bost School for Limited Children in Ft. Smith, AR. He made some progress in almost all areas while there, but at puberty his ”random” upsets became more than we could physically handle, and it was necessary to find him a “home away from home!” That was absolutely the hardest thing I have ever had to do in my life, but God turned it to Ben’s good…and to ours.

Ben, 10 years old

Ben, 10 years old

Ben at 14

Ben at 14

He was just home for a week-long visit, and did so well. His visits have always been about every three months, for a week to ten days at a time, and he has remained a vital part of our family all through the years. When Ben was small, my husband said to me, “Maybe he’ll be your comfort in your old age!” At the time, I thought that to be ludicrous, as the future looked so bleak. It turned out that “prophecy” was right and true though. Now, Ben enjoys his visits at home with us, but has a job and routine provided where he lives that is good for him, and that he is used to. He is able to go everywhere with us…to church and choir practice, to the mall, or to visit family. He is also a BIG help, whether washing the car, emptying the dishwasher, running the sweeper, or helping to grocery shop. His presence IS truly comforting!

Ben helping with the trimming of the shrubs. Ben helping with the trimming of the shrubs.

His behavior is exemplary 99 and 9/10 percent of the time, but it is that other tiny fraction of a percent that keeps him needing help and supervision on a full-time basis (along with not being able to fully understand the “nuances” of life). Although he can talk (say and understand words), frustration can “kick in” for him since he is not able to completely put his wants or needs into sentences, or converse …and then it’s “Katy bar the door!” That in particular, is what we still can not handle at home. All in all though, he is a fine, brave man who has done very well with the lot he has been given in life, and we are VERY proud of him!

Ben rolling his cars and watching the wheels go around.

Ben rolling his cars and watching the wheels go around.

At first I questioned God about Ben’s condition, and got downright angry with Him. How could he allow such a thing to happen to an innocent little child? My turmoil built until I was on the verge of a breakdown. (See Christian Testimony Concerning Autism.) It was so hard to observe my little son “slipping away” at the age of two. It was like watching him die right before my very eyes…yet being helpless to stop the onslaught. One minute, he was talking and learning, and the next he was regressing; repeating only what was said to him in a “parrot-like” fashion. One minute, he was playing and relating, and the next, he was rolling his little cars back and forth, watching only the wheels go around; oblivious to us and all his surroundings.Doctors were unfamiliar with even the term “autism” back in 1966, and we ourselves (having never heard of it) delved through many books, trying to understand in even the slightest way what was happening in our lives. Through it all, I came to the place where I turned to the Lord and gave Ben and his malady over to Him. Since that time, God has been my Rock and Fortress through the storm. He has brought positive things about for Ben that NO ONE else could have managed. My heart goes out to all whose children have recently been diagnosed as autistic. There is no more “baffling” condition. I have written MUCH throughout the years that I am glad to share. After all this time, there is one thing I have learned for certain…that in the world’s eyes, Ben may have problems mentally, emotionally, perceptually, and/or relationally, but SPIRITUALLY…he is whole and healed (See “Child’s Spiritual Potential”). He loves to hear about Jesus, and in the whole scope of life…Spiritual healing really is the most important issue!

Please read the other postings listed above (or scroll down), and/or the ones listed on the right, or in the Archives. I think they will be encouraging to those going through all that right now. If you can not cover it all at this time, please come back again. I hope and pray that it all blesses you! The postings and pages are numbered according to chronilogical order in Ben’s life! Numbers 1 through 10 are listed above on the page listings, and #6 is also listed on the right-hand side of the page. #8–”Symptoms of Autism: Characteristics as a Child–Then, as an Adult” would be especially helpful, I believe. It is long because it lists each symptom of autism and comments on it, but you can come back as often as you like in order to finish it.

Carole Norman Scott

Carole Norman Scott

I am a wife of fifty-six years, mother of three and grandmother of two (all pictured below). I enjoy writing, singing, and photography, and am also a speaker for Stonecroft Ministries. There, I share how trusting Christ has helped me in dealing with autism all these years. That story is listed in the right-hand column of this page (“My Christian Testimony Concerning Autism”). I have also spoken at a teacher’s retreat for “The Little Lighthouse”…a school for handicapped children in Tulsa, OK. I told about Ben’s life and times, which involved a first-hand glimpse into autism and all that it entails. I feel my “calling” has been to be available to those in need…whether it be our autistic son, other family members, or friends. I am also a fifteen year Non-Hodgkin’s Lymphoma cancer survivor (which could be “another” blog).

The Scott Family on our 50th Anniversary (L to R) Jay, Ben, Carole, granddaughter Kelly, daughter,Maureen, granddaughter Shannon & son John

The Scott Family on our 50th Anniversary (L to R) Jay, Ben, Carole, granddaughter Kelly, daughter,Maureen, granddaughter Shannon & son John

I would also like to mention the Honeysuckle vine in my header photo. In my “carefree” childhood (or so it now seems), I could smell the honeysuckle outside my open bedroom window wafting its sweet fragrance through the still summer night. The photo serves to remind me of who I once was, and still am deep down inside…BEFORE autism…when I so easily felt the innocence of hope and trust in the future. Never, never lose sight of who you were/are APART from autism…no matter what obstacles appear in your present-day journey! Keep that same hope and faith STRONG today! You are STILL that same YOU!

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Excerpt From My Journal–November 16, 1970–Ben, age 8


It has been a long time since I have written, but our lives have changed again, and this time, I believe it is for the better. We have lived in Ft. Smith, Arkansas for one year now, and it is a real nice town (about 80,000). I love our house, and we have the nicest neighbors we could have hoped for. We only live about 1 1/2 blocks from Maureen’s school, and she says she feels real “at home” there. She has the same teacher for 5th grade that she did for the 4th, and is still making A’s. She is active in Girl Scouts and church activities, so has some social life too. (10 years old)
Ben (autistic) is opening up more and more. He still has a LONG way to go, but every “little” improvement helps SO much. He is going to the Roger Bost School for Limited Children, which is mostly for retarded children, but they have accepted him and are learning to “know” him, and to see his improvements for themselves. He is the only autistic child there that I know of. It means so much to have him ACCEPTED. He gets to ride the school bus to school and back home, and gets to go all-day this year (for the very first time in his life). It has really been a change for me. Ben has been so heartbreaking and frustrating…and yet he is so “special” and challenging. I have almost given up on the theory of a “breakthrough”…and yet his teacher this year, Mrs. Lee, sees what we mean about his seeming potential. We started him two days ago on Dr. Rimland’s mega-vitamin therapy. I hope and pray it helps him!

Ben's Bost School Class--he's on the left.

Ben’s Bost School Class–he’s on the left.


Johnny is quite a boy (age 3). He is the answer to my hopes for a little “middle of the road” child…although I certainly think he is exceptionally bright. He says so many things that I can’t possibly write them all down, and we enjoy him so. He is very loving and good-natured…all boy, but very sweet to go with it. It has been SO good for all of us to see him develop and relate normally, and makes us realize even more what problems Ben has had. Johnny understands and perceives naturally (with no help from us) what Ben has taken days, months and years to percieve. Ben and Johnny relate to each other well (Johnny has never known any different), and that warms our hearts too. Maureen remembers Ben when he COULD play and talk, and she continues to work with him when possible to help “bring him out of it!” I feel SO blessed! Thank you Lord for an answer to our prayers!

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5. Ben at age 6


Our family in Lebanon (L to R) Jay holding Johnny (1 yr.), Maureen (8), Ben (6), Carole)

Our family in Lebanon (L to R) Jay holding Johnny (1 yr.), Maureen (8), Ben (6), Carole)

By: Carole Norman Scott

3/11/13–Ben is now 50 years old. This is written from journals that I kept of his life. I was amazed at how much he talked at age 6…even though it seemed at the time that he talked very little. As an adult, he has experienced grand-mal seizures and so doesn’t attempt to say as much…as he has a stutter. Recently, he was trying to say spaghetti, and he said, “Spa, spa, spa”…then, he grinned and looked at me like, “This is ridiculous!” He still knows what you are saying to him though, and can answer in one-word, or finish a sentence. He is always paying attention, and is very “with it!” I found these journal “tid-bits” to be very interesting, and I hope that they are helpful to you in some way.

1968–Ben is six years old–waiting to start school at Child World Pre-School in Kansas City, MO. (after we moved there in December). He was home several months with me and baby John. Maureen had already started school.

1. While Ben was home with me, he seemed to keep fairly well occupied. He spent a lot of time looking at books and comics, and has been real interested in “how many” of everything there are in the pictures. He seems aware of numbers, and counts “1,2,3,…5″ (every time). However, when he wants his Daddy to play the game where he swings him up in the air, he says “Play 1,2,3,4,5.”

2. He woke up several mornings at 5:00 and 5:30 A.M. He wouldn’t go back to sleep even if we laid down with him. He wakes up giggling.

3. He notices the letters of the alphabet in his soup. Said, “There’s a “4.”

4. He pays attention to his baby brother. He comes into his room everytime I go in there to change his diapers, and watches intently. I asked him to go get me Johnny’s slipper in the family room and he did.

5. He asks to get the toy train down, and to “take a bath.” He loves to play in the water, but not to be washed. He cant’ stand to have his toes washed. He acts like it REALLY hurts him.

6. He held his Captain Kangaroo doll in his arms and patted its back like he REALLY loved it.

7. He is still making noises some, and runs to his bedroom going “whooooosh” when things don’t go his way. He got out of the car when I told him not to yesterday, and the cars around were dangerous. I told him to get back in, and he didn’t, so I gave his bottom a smack. He got in, and screamed and cried the loudest I’ve ever heard him. He hit Maureen and she hit him back. After he calmed down, he was very reponsive and in a good mood all evening.

8. Still does same “naughty” (I don’t think that is the right word/description) things over and over. He doesn’t seem to do them on purpose, but still, it is VERY frustrating!

Ben riding his pedal tractor

Ben riding his pedal tractor

9. He loves to ride his toy tractor.

10. When we said our blessing at dinnertime, Ben mumbled, “Dear Heavenly Father.” He says, “God is great, God is good”…but leaves some of it out.

11. He still has trouble with his bowel movement now and then. He makes smudges in his pants. The week he was home from school though, he went all by himself three different times.

12. He played with a beanbag with Maureen and put it on his head and walked beside her when she asked him to. He also watched her do the “wheelbarrow”, and moved his hands like she did when I held up his legs. He was real proud of himself. I got a lesson in patience from Maureen (8). She said, “Mother, Ben put the beanbag on his head and walked with me. It just goes to show you, don’t give up too soon, or you’ll never know how smart your little brother is!”

13. He seems real interested in people’s faces. He is always looking at his stuffed toys, or Johnny, or his “Charlie Brown” doll and points and says, “Eyes, ears, nose, mouth,” etc. He looks at plastic jack-o-lanterns and says, “Happy eyes, happy nose, happy teeth.”

14. He likes to play with the sweeper.

15. He set the table for me and put the silverware where I told him…one at a time. For instance, “Give daddy a knife”–”Give Maureen a spoon,” etc.

16. When I told him on Friday night that grandma and grandpa were coming Saturday, he went and opened the front door and said, “They’ll be here in a second.”

17. He cried when he couldn’t go to school.

18. He looks us in the eye and seems aware of our facial expressions (this is after he had no eye contact at 3 1/2 through five years of age).

19. He sleeps in the same room with Maureen since Johnny was born. If he goes to bed first, he looks at me with big eyes and shakes his head “yes,” and says, “Maureenie will be here in a minute.” (He’s heard me say that). It seems to have helped him to be in the room with her.

20. He always hangs his coat on the peg and puts his shoes in the box when he comes in the house.

21. I asked Ben his name and he said, “Name?…Name is Ben Sott” (can’t put the C in it). Later, I asked his age and he said, “I’m five” (he was six). The other day he was looking at a book and he counted the animals, pointing as he did. He counted to thirteen, and only skipped the number twelve.

April 18, 1968

Ben seems to be progressing little by little. He still will not answer a direct question, but repeats what is said to him. He was quite a bit more responsive when we went to Kansas City on Palm Sunday. He seemed to remember relatives, and to know who they were. He seemed happy, and minded well. He made no “whoooooshing” noises! He hasn’t for several weeks now (and that went on for several years).

He still occupies himself by throwing his stuffed toys up in the air, and holds his ears as they come down. He can throw high and far. He threw a plastic jack-o-lantern clear over the house! He seems like he understands what I say to him more…or to be more exact…he DOES what I tell him better. He still has to be watched closely for his own safety.

He sings a lot. For the first time in his life, he is giving us some hint of what goes on at school by singing some of the songs they have learned there. He sings, “Ring aroung the rosey,” and “We march around in a circle.”

He pats my face and watches my expression. He asks my permission to do things. For instance, he says, “You can put on your jeans on!” (That is when he wants to go outside). “You” means himself! He also says, “You can put your “jams on” (when he wants to change his clothes after school…into his pajamas).

I tried to teach him the days of the week. I told him to say Monday and Tuesday…he did…, and before I could say anything else he said, “Threesday, Foursday, Fivesday!”

He puts his stuffed toys in bed with him and lines them up “just so, ” and puts the cover over them just up to their necks…like I cover him.

Ben with his stuffed toys covered like his is.

Ben with his stuffed toys covered like his is.

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Always Difficult Decisions!


By: Carole Norman Scott

Last Fall, my husband and I took our son Ben for an overnight outing. Before we got him though, we visited a facility for handicapped adults in Springdale, AR that we had not known about previously. It was really nice. There were three units that each housed ten people…along with two staff members. Each client had their own private bedroom, and then two shared a bathroom…kind of like a “jack & jill” arrangement. There was a kitchen that all the clients had access to, and training was provided in how to prepare certain foods. There was a resident cat…a BIG yellow beauty that was everyone’s “favorite!” From 8:30 to 2:30 each day, the clients went to a sheltered workshop-type setting and had jobs they performed there. Walmart also had a training area where the clients sorted articles for them. All in all, it was a very “homey” looking place, and there was much about it that we thought Ben would enjoy and feel comfortable in.

Ben at age 47

Ben at age 47

How does all this really affect our son, Ben though? Ben still has a few behavior issues periodically at age 49…not often, but enough to consider how he would fit into a new setting. He now lives in a unit that houses thirty men. It can get pretty chaotic from time to time (due to other clients periodic upsets too), and the noise bothers him. However, the staff knows Ben well, and it took several years for them to get acquainted with his idiosyncrasies, SO, moving him would be a MAJOR issue. Also, when he has too many changes, or commands, he tends to get quite anxious. What to do? Would the unit with less people help keep him calm? OR, would the move upset him so, that his behavior would escalate? Who knows? Ben isn’t telling! Oh…to have him be able to share his heart and mind! Oh…to be able to keep him from distress! It IS a puzzlement of giant proportions! After 45 years (he was diagnosed when he was four)…we are no closer to knowing what IS the best thing to do! We know only to go to the Lord, and ask HIS wisdom and intervention…HIS help in showing us by HIS guidance, and by how things “fall into place!”

Our overnight visit with Ben turned out GREAT! We took him to a hotel, and then out to eat at Chili’s! When asked what he wanted to eat, he said, “Chicken, mashed potatoes, gravy, and corn-on-the-cob!” So, that was what he got, and he finished it in no time. He LOVES the music there, the TV’s being on, and the atmosphere of watching food being brought to the tables, etc. Then, we went shopping at T. J. Maxx, and there are many beautiful things there…for the holidays, and such! They also play music, and Ben had a BIG smile on his face…like he was in the “heavenlies!” We watched the World Series baseball game that evening…which was topped off with a Hostess cupcake for dessert. Boy! Did his eyes light up when he saw that! I told my husband that a Hostess cupcake is one thing that is as good now as it was when I was a little girl 65 years ago, so we enjoyed one too!

The next morning, we took Ben to Denny’s and he had what he requested (the Grand Slam)…2 big pancakes, 2 sausages, 2 pieces of bacon, and 2 scrambled eggs…AND orange juice! He was in “hog heaven” (especially since we were in Arkansas)–HA! We then took him back to his living unit and were shown that they had installed a brand new “flat-screen” TV in his private room there…along with a lounge chair that reclines. How neat is that? SO…he fares very well where he lives now. SO, much prayer will go into any change for Ben! We only want the best for him. We already know that he gets excellent attention and medical care where he is. The other facility is probably good too, but is “unknown” to us! There are ALWAYS hard decisions with a child that suffers from autism…no matter what their age!

We are SO blessed that we can visit Ben there, and he can come home for visits too! Thankfully, for one who is not fond of “change”…he “goes with the flow” just GREAT either way! He liked sleeping on the divan that made into a bed in the living room of our hotel suite (we had a separate bedroom). He slept ALL NIGHT long, and thoroughly enjoyed the outing. I say “PRAISE THE LORD,” and feel assured that HE will show us in HIS timing what the next step (if any) is best for Ben.

June 17th, 2013–We are to move Ben to the new facility on July 5, 2013. It is QUITE a step of faith, and we are praying the Lord precedes us, and works it all to His good (AND Ben’s)! I’ll keep you posted! Look for a new page/post about it all!

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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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