1. Griefs Buried Deep (Introduction)

By: Carole Norman Scott

I have written all through my life…always thinking in the back of my mind that what I’ve documented through the years about Ben would make a very interesting book (there is even more you  haven’t seen yet).  It seemed that there was never time, or I didn’t know quite how to go about getting it published.  Then “blogs” came on the scene, and I knew I had found the perfect venue to share my writings, and to maybe help someone else in the doing.  So, bear with me while I show you just a little of what the “introduction” to my book would have been.

Sometimes there are griefs buried so deeply within us that they are almost impossible to share with others.  Life is far from “fair.”  We cannot understand why things happen as they do, and we either adjust to, or withdraw from life in our injured state.  First, I want to dedicate this book to its true author…the Lord, without whose love, patience and forgiveness, I could never have come this far.  He has grown me, molded me, and given me a compassion for others in their suffering that I would never have been privileged to experience otherwise.  Next in line comes the book’s subject…our autistic son, Ben, who is now fifty-five years old.  He has overcome SO much in his troubled lifetime (often while living away from home, and on his own in his many crises).  He was loving as a very small child, yet became most challenging and befuddling as he entered into the “wasteland” called autism…not only to us, but to the doctors and psychologists who worked with him first-hand.  His problems stretched us far beyond ourselves, and brought us into a “spiritual” dimension and understanding that we could never have managed otherwise.  As an adult, he has calmed, and become a “quiet solace” to us in many instances. 

Next, my husband, Jay, who has stuck with me through it all.  We have been married a few months shy of 60 years now, and he has kept his marriage vows of “for better or for worse,” and has remained the “same”…never blaming, always there, and supportive all the way.  He has been my best friend, protector, lover, and in times of great stress…an aid in finding my “sense of humor” in otherwise overwhelming circumstances.  

Ben’s siblings, Maureen and John are also to be commended.  They are both “normal,” (praise God), and seem to have been gifted with an “extra” measure of reasoning and intellect in order to take on the task of living and growing up with Ben and his eccentricities.  They have tried to help, “hung in there,” and found humor and ways to cope…in spite of the hand that fate has dealt them. 

Next, Ben’s grandparents (all now gone), aunts, uncles, and cousins who have loved him unconditionally.  They have listened when I poured out my heart about him, prayed for him, and always helped us in any way they could.  Also, our Church family and friends, who have prayed for Ben all through the years.  Likewise, our friends who continued to invite us into their homes and treat us “just like any other family”…even though we definitely weren’t!  Lastly, a junior high and high school friend my husband and I had both known, who came to a reunion in August of 2000 after an absence of forty-four years, and then started corresponding with us.  We found we both had an interest in writing, so shared some of our “creations” with each other.  He then encouraged me in his own inimitable “witty” way, to do what I had started out to do years ago, but had gotten sidetracked…to compile all that I had written about Ben throughout the years and put it into book form.  I could tell from the start that he had a compassion and understanding that not many others had displayed, but it wasn’t until he told us about his daughter who was profoundly deaf, that I knew we had encountered a “kindred spirit.”  His correspondence spurred me to “get on with the task at hand,” and helped me to connect the person I used to be with the person I am today…in spite of , and also because of, all my experiences with Ben.

Also, another “longtime” friend from the reunion, whose wife had just recently been diagnosed with Alzheimer’s disease at age sixty-three needs to be mentioned.  He suggested that I write the book “we all need for those who are experiencing long-term suffering”…whether it be in our own lives, or in dealing with the “traumas” of those we love.  To be sure, for us, our suffering began with our little son Ben’s diagnosis of autism in 1966, when he was four years old.  We still remember the helplessness we felt then, and have continued to feel throughout his lifetime. Back then, autism was considered very rare… certainly no one knew what caused it or what to do about it (unfortunately, they still don’t today), and most people had never even heard of it, ourselves included.  We felt completely “on our own” as the doctors admonished us that he “wasn’t as bad off as he could be,” and to “take him home and treat him as normal as possible.”

We are aware now that other people’s problems come with a whole different set of symptoms, experiences, and crises that arise from them.  They can take on many forms and assail in varying ways and degrees.  For instance, our friend’s wife who has Alzheimer’s no longer knows him or any of her family, is bedfast, and cannot talk.  When I heard how all this had affected him, it occurred to me that the helplessness he felt as he watched her deteriorate right before his very eyes, was similar in some ways to what we felt when our little three year old son seemed to regress into autism…when his speech changed from being able to talk in sentences–to speaking in a “parrot-like” fashion, and his behavior changed from childish play, to bizarre, ritualistic routines that had no meaning to anyone but himself.  Pondering all this gave me the incentive to begin to gather all I had ever written about Ben…the diaries, letters to relatives, correspondences with schools and doctors, and poems that expressed my feelings about almost everything we had experienced.  I found that I already had my book at least half written.  It certainly still needed to be completed, assimilated, organized, edited, and then, published!  I began to get excited to “get at it,” and provide something for people who had shown an interest in it to “sink their teeth into”…for reading and approval!  So all these articles that you see on this blog are part of that book!  You are reading my book, “Ben Scott–Pioneer in Wilderness of Autism.”  I hope it helps you in your journey through life…whatever you may be dealing with!

5 Responses to 1. Griefs Buried Deep (Introduction)

  1. autism45 says:

    Thanks Margaret–I am always blessed if my writings have helped someone in any way! Hope the rest speaks to you too!


  2. Hi, Carol. Thanks for being so open and honest in your blog. As a person who discovered she had Asperger’s as an adult and grandmother, (through my grandson’s diagnosis), I often wonder how my Asperger’s daughter and other two ‘normal’ children survived the upbringing I gave them. Reading your blog is a comfort to me; knowing there are parents who are aware and dedicated and giving their children the tools to help them through lifts me up in a way I can’t explain. I also believe faith is important, not only for the parents but for the autistic/asperger’s child. I can’t wait to read the rest!


  3. autism45 says:

    Maria, thanks SO much for your comment. That blesses me more than you can know. I’ll add you to my prayer list of those dealing with autism. God bless you!


  4. Maria Simeone says:

    Hi Carol. I just wanted to let you know that whenever I’m having a bad day worrying about my little boy I remember how your faith in God helped you through all the years of autism with Ben. Sometimes I let it get the best of me and lose my hope. You help me get back on track. Thanks so much…


  5. Carole, I’m hooked for “the rest of the story!” Pat R.


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