Pioneers in the Wilderness of Autism


By: Carole Norman Scott

 

Ben at Christmas--2012

Ben at Christmas–2012

Living with autism has been quite an experience…one which has brought much sorrow, but thankfully, much joy too! As an adult, our fifty-four 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 28 months

Ben at age 28 months

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 teacher’s aides. However, 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 there were “glimmers” of high intelligence).

Ben's 4th Birthday!

Ben’s 4th Birthday!

Ben, 10 years old

Ben, 10 years old

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 helping with the trimming of the shrubs.

Ben helping with the trimming of the shrubs.

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! 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!

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.

Ben rolling his cars and watching the wheels go around.

Ben rolling his cars and watching the wheels go around.

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. 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-eight 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 nineteen 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, 2008 (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!

My blog has recently been added to Autism Blogs, which is part of one of the largest networks of blog directories on the Web. Please visit my blog’s personal page to vote for my blog and comment to other blog users.

7 Responses to Pioneers in the Wilderness of Autism

  1. I found it interesting to see how the treatment for Autism Spectrum disorder has changed: from the journal’s time to now. Keep sharing your journey. It is great information on how you developed the talents of autism. Cheryl Zmijewski RN

    Like

  2. TYRA says:

    Hello,
    Thank you for writing your life journey with your son. I like your faith testimony. Can I have your email address, I would be more than happy if I can write to you.
    Thank you and God bless you

    Like

    • autism45 says:

      Tyra, thank you for your comment, and I hope the articles blessed you. Do you have an autistic child? My email address is Lcarolescott@aol.com write and I’ll be to see if I can help!

      Like

      • TYRA says:

        Hi Carole,
        I’m a mother of a 4.5 yo autistic son, he’s my only child. Sometimes I think that the future is bleak and sad. I’m more than happy if you could write more about your feeling as a Christian, handling this situation. You seem to be an always a happy woman, regardless your previous health problem etc.

        Like

  3. Nancy Haswell says:

    Carole,
    I have known this but this is so much more detailed. What a beautiful and gifted person you are inside and out and how meaningful your life is!. I treasure our friendship so very much.

    Like

    • Thank you Nancy–I appreciate your kind words. I treasure our friendship too. God has been good to us to bring us together as neighbors and friends! Yes, you haven’t really heard all the details of Ben’s childhood. It was quite a “ride!”

      Like

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