"Loving the Soul Beneath the Autism" excerpt by Janele Hoerner (CatholicMom.com) I love my child. I love him more than I have ever known of love. Gracin has ultimately brought me to understand what it means to love; although, that fact in itself did not mean I could not be entirely overwhelmed by his behaviors. At the beginning, a mother’s reason for being is to love a sleeping, movement-free addition to our world. That sleep reminds the parent of the good, the love, the work, the truth, that what they are doing day in and day out, moment-to-moment, has all been worth it. The ultimate question, then, is worth what? What are we doing anyway as parents? Why are we raising these children who cause us so much stress after all? Are we doing it out of our own needs and the picturesque societal perfect family? Is there a white picket fence surrounding a large house with two perfect little additions playing in our back yard? Is our house big enough for our family of four? Do we get to go on fun trips multiple times a year? Do we make our neighbors jealous of what we have? Do we have just the right balance of happy and sad, wrong and right, to make us feel happy? Is everything perfect and new and shiny? No, No, and most certainly no in our case. You see, I was nowhere near perfect, new, shiny, or where I thought I wanted to be as the days of my wedding approached. I never did desire to have what society stated as desirable. I had much larger, or in reality smaller, plans in my own mind. I wanted a large family with many children, as many as I was given, and although I craved to have a large house on a cul-de-sac in a nice neighborhood, all I truly wanted, at the root of my soul, was a peace-filled life in raising my family and the ability to enjoy their presence. I desired to be as Mother Teresa stated: “The Sunshine of God’s Love;…God’s Good News;...(and) God’s Love in Action.” Yet, in our lives, with only one child, I was the opposite of that which I desired to be. Out in public I wanted to show others our happy and peace-filled life. Yet, to be as Mother Teresa stated, “Each time people come into contact with us, they must become different and better people because of having met us… We must radiate God’s love,” seemed impossibly out of reach with the child I had. I only had the desire buried deep inside to be real, calm, disciplined, and true to myself in all of my thoughts and actions. Though, in reality, I was horrible at showing the world what I was trying to be. By attempting to fit into the societal norm as well as act in the virtues stated above, I was ultimately failing at both. Knowing that in only a few days I was about to marry a man who exemplified everything I ever desired in my heart, I had to make a choice. A choice away from what everyone knew me to be, or thought of me to be, into the person who I wanted to become. It was no longer about my desire, but a desire towards the future of our family and what we wanted to be known as, as a family unit. Even though I, myself, was greatly lacking in a multitude of areas, I knew that with our vows we would become one within the eyes of God. That was going to be my new start. While my husband and I were starting off our marriage with a child, we really had little idea how much impact this would bestow upon our lives. After all, this child was not a calm, peaceful, little toddler. He, in his own right, was impulsive, ever moving, and complicated. This was, nevertheless, a result of my own decisions; therefore, the impact that this child bestowed on our life, by his developing ways, was no fault other than my own. Gracin was, in fact, the small puzzle piece of my life that I was trying my best to push into place. I did not have the time or the energy to deal with this challenge. I wanted and expected him to follow happily behind me like a duckling following behind his busy mommy. Well, of course, he wasn’t a little duckling after all; consequently, there would be no following. He was, in fact, running full speed ahead of his busy mommy, as she had to change her direction to save him from many almost disastrous experiences. Gracin, as I have stated, had many impulsive tendencies, but the scariest of all was that of the road. He had an intense obsession with the road. He desired to stand in the middle of each and every road and laugh with joy, but it was not funny at all. I cannot count how many times I scooped him up as a car slowed down for us or pulled him back as I collapsed into tears. He just thought it was so much fun, and that was about the extent of his play as we began moving into our new home. Since toys were apparently boring, and the road was the best thing ever, Gracin would stand on the windowsills and stare at the cars passing by on that magical road of his. He would attempt to happily scream louder than the sounds made by the vehicles. Even though this was a very loud and questionable behavior, we did not think much of it. At the time, we just thought it was because he wanted to be outside and was being tormented by the passing of the cars. Since we were not inside with our little fireball all that much, the battle of wills between the cars and him inside did not seem to be of much importance. Although, when we were outside, he attempted almost constantly to be in the middle of his best friend - the road - and that made me extremely uneasy. I could distract him slightly by being in the backyard, but with the sounds of a passing car coming every few moments, my distractions were essentially useless. My utmost attention had to be on my child. If I, for one split second, took my eyes off of him, to say hello to a passing neighbor or to answer the phone, he was like a rocket released to the road. The road was just too enticing for his mind. In addition, when he was outside and an ambulance, or “noisy car” as Gracin would say, began to approach, he would again dart for the road screaming as loud as he could while subsequently covering his ears. We believed he thought the road was the perfect place to scream with joy. As a result, he made me look like the worst parent ever because who on this earth lets their child play in the road for fun as I seemed to do? The many glares, glances, and, at times, pep talks from strangers, were embarrassing. It was a horrific game that we believed he thought was of the utmost enjoyment, but in reality he was not acting out of enjoyment at all. We also thought he may be acting out of defiance and were dealing with a discipline issue. Although, as we came to see, he was only trying his best to show us his sensitivities. The almost constant rush of the cars passing and the noise and intrusion it was interjecting into his mind were actually hurting his head. He was only attempting to stop the noise by running into the middle of the road. His happy scream was his own way of drowning out the sound inside his head. Sadly, we had no idea at the time. We were as lost as we could be as to why he was doing these behaviors. We just wanted them to stop. This little boy was pushing me to my limits, and he was barely two. We believed he thought everything was a game. It seemed that every disciplinary direction that we gave him just made him laugh. It was horribly frustrating because he was so full of joy and smiles that it continued to make us wonder if he even understood anything that we were asking of him. It is almost impossible to fully describe how much energy Gracin truly had. He could not sit still for seconds, let alone minutes, unless immersed in simultaneous rocking and prayer. It was like he was either on or off. There was no in between. He hated or loved something even for the smallest amount of time. Everything was completely and totally funny. It was funny if I cried at the side of the road at the thought of almost losing him to being hit by a car. It was funny if I got angry and smacked his butt for being in the middle of the road once again or screamed at him for doing something for the fifteenth time. It was even funny if I laughed at something cute he was doing. Everything was hysterical. Not one thing would faze this child, and nothing I tried would make him listen. No matter what type of punishment we used on him, it was a complete joke. He did not respond to redirection, time outs, a smack on the butt, or anything. We were at a total loss as to what to do. No matter how much we watched him, his impulsive bursts landed him in some serious close calls. By the grace of God, nothing left more than a scratch on his body. You see, our son had no desire to follow in our footsteps and hold our hand like other kids his age. Even though other children do pull away from their parents and want to control where they go next, it was the constancy and number of times that our child did all of these behaviors that I am describing. Most children respond very well to facial cues, but when we frowned and gave a look of disapproval, Gracin would just keep doing whatever he was doing. It seemed as if he felt he was being praised. Smiling at him also made him continue what he was doing because he would feed off of approval and become even more active and mischievous than before. He ultimately could not control his own energy level, and, therefore, was a danger to himself. We did pay attention to each and every behavior and sensitivity, but it turned out to be more avoiding what was causing him pain instead of helping to ease the sensitivity. Gracin and I moved into the house a few days prior to the wedding day. In an attempt to help him respond as easily as he possibly could, we put a great deal of energy into replicating his sleeping arrangement perfectly. Happily, the transition to his new room was flawless. I was eternally thankful. Keeping everything consistent worked perfectly. We gave him the biggest bedroom in the back of the house because it was the farthest from the sounds of the road. We decorated his bedroom with dark blue room-darkening curtains taped to his walls so to not let any light enter. Behind the curtain rods, I even taped foam backing so that light could not escape. A noise machine was placed under his crib set to the white noise setting. I had a specific line drawn with a black marker at the perfect setting for him to not hear a sound from the trucks passing by or if I dropped something in the kitchen. Standing in his room with the door shut, you would not have known if it was night or day, it was that dark. We made every preparation for our light sleeper to allow him to sleep the best he possibly could. I was extremely proud of where we had come from and where we were at that moment. Even though I had no idea why my son was so fussy, we just made adaptations to our lives as any loving parent would for their child. We were thrilled to now be a true family, united by our marriage, as my husband moved into the house in the days following our wedding. It was the three of us against the world. We had no idea that we would soon feel as if we had the world against us. Loving the Soul Beneath the Autism is available at Amazon.com.

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Copyright 2019 Janele Hoerner