6. Pilot Program at University for Ben at age 6

By: Carole Norman Scott

This is the experience that I mentioned would be continued in the ending of the article about “Ben’s Kindergarten,” etc.  Read it BEFORE the “Graduate Student” article. 

Our experience–1968–Ben, age 6:

As things progressed in Lebanon, we became more and more aware that Ben was not going to rally from any existing training there. We were told of a new pilot program for autistic children being set in motion at a Mental Health Clinic connected with a university in a town three hours from us.  All who knew of it felt it was worth looking into.  We were encouraged to submit Ben’s name and medical history…which we did, even though we had already been through such a traumatic experience at a Medical Center in Kansas City two years earlier.  Those two years of living and dealing with unrelenting autism made it seem advisable to at least try it at this point.  The months were slipping by, and so was Ben’s life.  Something had to be done. 

Our family in Lebanon–1968

Our whole family took the three hour drive to be interviewed.  The social worker assigned to us was very kind.  She wasn’t looking for “hidden” motives or agendas.  She even hinted that we appeared a fairly “normal” family despite all we had dealt with.  Ben was evaluated in several one-half hour sessions by psychologists who beamed with the surety that, given the chance, “they” would bring Ben out of his long-standing, seemingly self-imposed exile in no time.  We, though a bit more skeptical due to our “hands-on” experience, were more than ready for them to succeed.   We toured the facility and met the lady doctor in charge of the program. We listened intently as she expressed their desired goal in the treatment of autism and their “game plan” (so to speak) to achieve that goal.  It sounded good (if only it would work)!  Ben had never been in a program geared to his specific needs.  Maybe this was the answer. 

We were all very tired.  It had been a qrueling summer in many ways.  The move and all the changes that entailed, had almost been overwhelming.  Maybe Ben would be better off in a completely “structured” atmosphere where our emotions were not rubbing off on him (and vice-versa)!   Though it would involve him living away from home for a period of time, we felt it must be given a try…anything within reason to help our precious son…to draw him back into the world of the living.  We were willing, even though we knew it would once again place us on an emotional roller coaster.   In looking back, I don’t know how we did it.  The “hope” element played strongly in our decision, and I hadn’t learned yet to involve the Lord as much as is necessary in such situations.  If we didn’t try it, we would always be sorry that we perhaps kept Ben from the “key” that could unlock the mystery of his baffling malady.

A time was set to bring Ben back to the facility to start his in-house training.  On our way home, everyone was subdued.  Even baby John (1 year) seemed to sense that something ominous was about to happen.  When Ben had been evaluated at the Medical Center in KC at age four, I had at least gotten to see him everyday. This was a LONG ways from Lebanon.  They did not encourage daily visits anyway.  They wanted the child to be able to adjust to being away from his family.  They said we could see him on weekends periodically. 

I don’t  remember keeping a diary of these happenings, so I am writing this from the memories indelibly printed in my mind.  Although, I couldn’t bring myself to believe it was really happening, the day finally came where we took  our beloved little six-year old son and left him — believing in our hearts that their new-found methods of treatment would miraculously enable us to regain the little son we had lost.

Our home life was strangely different without Ben and his problems as the focal point.  We all grieved for him and the reason for his absence, but at the same time, it was strangely peaceful.  We had never been a family without turmoil, and Ben’s behavior was the cause of that turmoil!  In some ways, the change was refreshing to us all, and we found we were experiencing a much needed respite.  In other ways, it was devastating!  Jay had his work, Maureen had her school, and John, his babyhood for protection, but I bore the full brunt of his absence.  I was without one of my children, and did not know how he was faring.  He could not tell me what was happening to him, and sometimes my imagination got the best of me.  It hurt deep down inside me.

Somehow, we went on with our lives.  Halloween came and went.  I took Maureen and Johnny “trick-or-treating.”  Maureen found that the  public school in Lebanon in no way compared to the Laboratory School she  was used to in Springfield.  She was so bright that I worried about the effect all this was having on her.  A kind mother of one of her classmates invited me over for coffee one morning and listened while I talked.  I will never forget her merciful spirit and how it ministered to me.  We were in a strange new environment, away from family and close friends and felt very alone in our grief.    Not too many people understood.  Not many had ever heard of autism…let alone known what it entailed.  The kids in the neighborhood began to make comments to Maureen about Ben being “crazy” and we found in due time that they had heard it from their parents.  Little Johnny continued to thrive, but I could tell he missed Ben.  After all, he had never known any different.

Although Ben was 5 here, this is how he looked when we went to see him too!.

Finally, we were able to go visit Ben on a Saturday.  We found we were not prepared for what we  observed there.  The program only ran Monday through Friday.  On Saturday and Sunday, there was not much structure provided.  We found Ben in a room with all ages of disturbed children.  Even teen-agers were walking about, talking wildly and striking out at each other.  Ben came into view with sunken eyes and a distended belly, and he looked as though he had not had a bowel movement since he left home.  No one there seemed to notice his distress. Again, my worst fear realized.  He clutched a Raggedy Andy doll tightly in his arms and seemed oblivious to the goings-on around him.  When he spied us though, he seemed genuinely glad to see us.  Since there was no way to converse with him, we had to be satisfied to sit with him amongst all the chaos and then finally, to get up and leave him once more.   I don’t know how we did it.  The hope that they just might restore him to us gave us the resolve we needed.  Oddly, when I look back on it knowing the outcome, I can see that our well-meaning quest for a cure  managed to mold us into actually becoming the parents the doctors believed us to be…cold and unfeeling.  It was an absolute must in order to survive!

Several weeks later, we received a call from the doctor in charge of the program.  She was the one who would decide on Ben’s fate.  She said that she needed to talk to us, and could we come to the facility to meet with her?  We complied (hurriedly and excitedly), hoping to hear that Ben had been accepted into their school, and would benefit from all the vast knowledge they had been able to compile through their observations of him, and their working with other “truly” autistic children (which we had YET to ever meet, ANYWHERE)!  We arrived for our meeting, and when confronted by the doctor, were asked, “What did you want to see me about?” That statement shocked us into reality.  It was like being kicked in the chest!  It confirmed the deep feeling we already had…that this was was proving to be another operation we should steer clear of.  Although they may have meant well, we felt that we (Ben, as well as ourselves), had been the “guinea pigs” for a program that was disorganized and ill-conceived, and was yet to come into being!  We told the doctor how we felt, and that we could not possibly leave Ben in this setting. It was not safe for him, and nothing was “cut and dried” as to his living arrangements, teaching methods, or visiting rules.  With that, we gathered Ben and his belongings up and walked out of that place FOR GOOD!  It is interesting to note that Ben picked out our car, out of all the hundreds of cars in that parking lot, as we walked to it from that dreadful place.  That was HIS way of celebrating! He had found the familiar family car, and was ready to ride home in it…seeming to relate better to it than to us…although we sensed a “secret” joy within him at being with his family again!

This experience, plus finding out that the job opportunities and working conditions weren’t all they were “cracked up” to be in Lebanon either…made us decide to call it a day there too.  We had never purchased a house (a blessing in disguise), and so we gave our landlord notice, and decided to move back to Kansas City…close to our families and loved ones who cared, and who could give us a helping hand when needed.  I’ll NEVER forget our moving day.  The movers loaded us up, and their truck pulled on out.  Jay and I were each driving a car filled with the smaller items…plus the children, their pets, and all the “gear” that entailed.  I drove our little blue Volkswagen.  It had “fold-down” back seats, and Maureen and Johnny rode back there (before seat belts).  Ben rode with Jay in our other car.  We pulled away from the house and headed for KC without even a “fare-thee-well” to Lebanon.  In fact, while traveling, Jay composed a litte rhyme dedicated entirely to our stay there.  It was his first attempt at poetry, but seemed to TRULY “hit the nail on the head” as far as we ALL were concerned, and we all remember it even to this very day (as you can imagine…it was NOT complimentary)!

We stayed with my folks while we looked for a house (we still had the money we had received from the sale of our house in Springfield to use as a down-payment).  Jay was able to find a new job quickly, and we found a home and moved into it in early December, 1968.  Maureen started to school in the third grade there.  Johnny was fourteen months old, and Ben stayed at home for quite a while…with me working with him daily (I’ll share some of that later–it was before “home-schooling” became fashionable).  I’ll never forget that first Christmas there…back with the Grandmas and Grandpas, sisters, brothers, and cousins.  It was WONDERFUL to be amongst the “living” again!  Shortly after we got settled in, we heard of a program back at the Medical Center in KC for autistic children.  We didn’t think we would EVER go there again, but I finally ended up contacting them. They put me in touch with a young graduate student there who was anxious to work with an autistic child on a one-on-one basis.  We drew up a contract with him concerning that very thing, and once again, we dared to dream of great hopes for Ben and his future. (See “Experience with a Graduate Student in Behavioral Research” on the black Home Page bar).

PLEASE share with me by comment whether this is helpful to you (as younger parents of autistic children), and keep in mind that MANY years have elapsed since this took place (43 to be exact). This is a perfect example of what I meant about us being “pioneers in the wilderness of autism.” Hopefully, things have changed a LOT in the interim. I pondered whether to put it in, but there were several such attempts to help Ben by trying such programs, so it was a reality in our lives. I know it is hard to think on…but just might be helpful in some way to you and your autistic child, and/or your family. I need to know whether to share the other experience about Ben’s 1st diagnosis at four. I would have put them both in my book, but wondered about putting them on the blog. Please let me know so I can either post the other one too, or take this one off–OK? Thanks!

6 Responses to 6. Pilot Program at University for Ben at age 6

  1. Thank you so much Alex. It helps to know that our experiences may minister to other people…whether parents of autistic children, or those diagnosing & helping to teach or treat the autistic. Yes, it has been hard, with some very sad times–but it has also had many joyful and profound moments. We have found spiritual depth and comfort, & Ben has added dimension to our lives!


  2. Alex Rand says:

    To answer your end question, Yes! Please do share as much of your knowledge about autism and what you have experienced in the past. As an undergraduate student I find your experience insite full and unique. Particularly when we compare how children with disabilites were treated, alike Ben’s autistic behaviors, to in todays hospitals and how we first diagnose children along with letting their families know. This was such a hard time in your life. I can sense it in every word in your blogs. But this is your life, this is what makes you such an influential person and such an amazing mother. I truly look forward to reading all you posts, and I’m interested in seeing if you will have any other insights blogged. Thank you!


  3. autism45 says:

    I sure appreciate your input Kristin! I agree wholeheartedly, and we feel that way even yet when we go into the living facility where Ben is now. There are people who look and act every which way, but are able to communicate. Ben looks “normal,” but is still not able to communicate his needs, even though he can understand and say words, etc. It still doesn’t look like he belongs there though. My thoughts and prayers are with you as you raise you little girl. I’m SO glad I wrote how I felt at the time (and I still do write my feelings…even after all these years). Hopefully, it will help someone to know they are not alone. Thanks so much for your comments. I will visit your blog too! PS We are considering moving Ben to a different facility after many years (See “Always Difficult Decisions”). THAT takes a BIG step of faith. We would appreciate prayers for all concerns!


  4. k.d. says:

    I think it’s fair, and just, and necessary to share all of your experiences while trying to find help for Ben. None of it is your fault. Some parents ignore their children’s autism and chalk it up to oddity, and I know back then autistic kids would often be given up to the state or placed in mental institutions. You were trying to help him instead of taking the easy way out and giving up on him.

    I remember the feeling of shock and despair the first day taking my daughter to the developmental preschool in the public school system. It was full of other children with various disabilities and behaviors ranging from vacant to wildly out of control. It was really hard the first couple of weeks as they would have to literally drag her away screaming each day. Yet they got her talking. [And now I wish they would have included instructions for an OFF switch for the talking. : )] I know many parents would have taken one look at that school and decided staying in denial is easier than admitting their kid needs that kind of help.


  5. autism45 says:

    Thanks Rachel…it’s by the Grace of God! I will put you and Riley on my prayer list for autism. God Bless you! Carole


  6. Rachel says:

    I have a nearly three-year-old son named Riley. While I am vaguely familiar with how autism was dealt with historically, reading a first hand account is enlightening. You’re a very strong woman.


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