"Loving the Soul Beneath the Autism" excerpt by Janele Hoerner (CatholicMom.com) Gracin, my child, please just stop talking... Breathe in between words... Sometimes we think things without saying them... When I say no, it does not mean you can keep asking. The answer is no... You may not do this or that”… or ANYTHING! Gosh, I just sounded awful to myself and everyone around me. I felt terrible. How could it be that everything my child did be done in the wrong way? Why did his brain process everything in what seemed as a backwards manner? To answer everyone’s constant questions as well as my own, yet again, it was because this child was not the stereotypical norm that everyone expected him to be. Gracin could not be categorized by his outward appearance. It was easy to forget or push aside that he was, in fact, dissimilar to most other children. He may not have been blind, deaf, or physically impaired, yet with a careful eye one could see that he was incapable of making the same connections that most other children were. His diagnosis was a fact easily missed if you were too busy to see it or frankly did not want to see. Although, watching him intently, one could not deny the adversities. We, as his parents, were incapable of ignoring the facts as they were, and as difficult as those facts remained, Gracin needed those extra warnings, scheduled activities, and time, which proved that Gracin was vastly different than other children in his same age group. As an effect of appearing so typical, most children did not know how to relate to him. Within minutes of initiating an encounter to play, they would simply just walk away from him. Gracin, unaffected by the other child ending their play abruptly, returned happily to whatever he was doing beforehand. I, though, was endlessly puzzled as these situations increased. Was it because they could not understand him, or did other children believe he was different from them? The thing that really amazed me was how quickly these other young ones came to the conclusion that Gracin was different. It was as if he was so overly friendly that other children just knew something was tainted. Gracin was different, but was it so apparent that it was unacceptable to befriend him even if only for a few moments at the park? I can only describe it as if he intruded into their personal space and brought them into their own feelings of insecurity, so they shunned him as a result. However, I really will never know why those children walked away so quickly from my son. It was incredibly difficult because he was, and still is, so alike other children that he is deemed as “normal” just in his appearance. He then has this extra something buried beneath the skin that just pushes him into the special needs realm that most others cannot fully understand. All kids tire their parents out, but onlookers to our situation may never grasp what I am describing unless they have their own child on the autism spectrum or with a similar diagnosis. It was astonishing to me that other children could pick up on his subtle differences easier than most adults ever could. To another adult, he was an interesting and fascinating child to speak with about a topic of his choosing. Upon further review of more than just a lengthy one-sided conversation of informative information on one of Gracin’s favorite topics, the judgments were brought to light. I eventually heard comments such as that he was rude, obnoxious, out of control, or just plain spoiled. I received an extraordinary amount of criticism and glares from individuals I did not even know and some that I had known for a lifetime. I felt so torn because I wanted to talk to others about my son, yet I learned time after time not to even bother to try to talk to anyone about him outside the family, or sadly even within the family. Though it was while attempting to explain what sets my child apart from another child of his same age, that I most certainly heard the typically coined response, “Well my child does that too,” with the exact same attitude numerous times. Over and over, I was forced to bite my tongue in order to avoid yet another argument that would leave me flustered and feeling defeated. Ultimately, it led me to once again feel as if everyone around me was siding against us. I could only think to relate that yes, their child most likely does talk a lot, argue, get bored with toys, run in the house, and talk about their favorite things at inappropriate times, but it is to the intensity that our child does these actions that, nevertheless, sets him apart. The constant ongoing opinions about how we were doing almost everything wrong was just too overbearing. There was no more sense in constantly arguing with the individuals in our lives. Consequently, in a desperate attempt to not feel hurt anymore, we essentially pulled everything in. It was a tragic conclusion to what I felt was something that brought enlightenment and acceptance in my own life yet pulled me away from the individuals who were supposed to support me and my family. Accordingly and without remorse, I gave all of my being to Gracin and my other children. The time that my children were sleeping, I spent with my husband. When he was busy, I learned to occupy myself with reading as I ultimately became the bookworm that I should have been in high school but never had the motivation to be. I wrote notes upon notes instead of conversing with the outside world. I literally had all of my conversations written on scrap paper. In the deepest portion of my heart, I nearly acquired the isolation that I believe my child felt in order to better understand him. The thing I found impossible to relate to anyone with spoken words was that I did not desire my child to be different from everyone around him. I had received that criticism countless times. I did not want to label him with a diagnosis per se, but I did believe that by having a label of explanation to his life, he could have tremendous growth with himself versus not having that same label. I did not want him to be an outcast socially, yet it was obvious he was not a social butterfly. I did not understand the world’s desire to attempt to push my child to conform to a set of social desires that were, in reality, unneeded. Even though he truly desired to be every child’s friend, it was very obvious that other children did not share his same interests. As much as those peers seemed to stimulate his curiosity in their play, Gracin just could not sustain the same untimed play as they could. Their play bored him with its duration, and as an observer, it seemed that he was fighting a war within his own mind as to what his brain and his body would allow him to do simultaneously. Though within the adult world, Gracin excelled. He could literally argue about anything. He practiced his potion on me infinite times per hour. He could argue with anyone a fact as simple as getting him a drink of water or feeding the cat. I was at such a loss, and it seemed that if he was not arguing, he was most certainly talking loudly. If he believed it was an inappropriate time for me to have a drink, go to the bathroom, or even change his brother’s diaper, I received a response typical of, “No, you need to do…,” in the most condescending tone you can imagine. It was mind numbing to constantly have a young child not only try to tell you what you could and could not do, but then to also do it in such a harsh tone. It was almost as if every single thought that popped into his head was vocalized and vocalized in a very condescending tone. It appeared that Gracin needed to have an opinion on every topic and without a doubt had to have the final word. He could not understand or fathom why he did not know everything or why he was not privileged to know everything. Justly, we were at a complete loss as how to help our child transform his words into a more respectful tone and become less of a dictator. In all the typical parenting books that I felt were of no use to our child, I finally stumbled upon something that we could adapt to disciplining our son. As I have stated before, typical parenting strategies do not work on a child with high functioning autism. I believe one of the reasons why this is the case is that the connections in their brain have trouble retrieving information at the proper time. So, when they call upon their thoughts to help them decide what to do next, they are not always led towards the correct outcome. This term is defined as Executive Function, which is basically reasoning and problem solving. This is the exact reason why time outs never really worked for Gracin. On the one hand, he was not capable of sitting quietly for four minutes at his current age. Secondly, he was not able to remotely access why he was even in time out in the first place. Punishments were useless. He needed to be concretely guided time after time to retrain his brain to automatically connect how he should speak or act in any given situation. As outlined in Parenting with Grace by Gregory and Lisa Popcak, we started having Gracin restate his statements immediately in a respectful tone, while attempting to stay calm ourselves, after he said something out of line. According to the Popcaks, “When children say something in an obnoxious way, use the restating technique by asking them to rephrase their statement or ask them to repeat a more appropriate phrase that you suggest to them.” This was something that seemed redundant, yet slowly over time (we still use it daily) worked. It is extremely hard and does seem as an endless endeavor for us all, but in light of attempting to not take the first statement’s tone as disrespect and accepting that his first comment is most likely caused by lack of proper brain connections, we made significant strides. We also did a similar technique with behavioral issues. This is labeled “do overs” by the Popcaks. They recommend that, “When you are trying to change some behavior in your child, you must have him practice a more appropriate alternative every time you catch him doing the inappropriate thing. This is the only way your child will get enough practice to change.” I believe that by doing these two techniques, a parent is not only becoming a more attentive and less selfish individual by devoting a large portion of their time to their child, but they are also guiding their children into becoming a wonderfully respectful and loving individual. The key is that you cannot take the first statement or action personally and as an attack on yourself. You must rise above the behavior or comment to look beyond the initial reaction for the progress with the second try. Over time, and yes this could mean years, your children will reset those inappropriate connections and learn to be what you are yourself modeling as guided selflessness and respect. With these two strategies as our ultimate guide, I felt I could conquer anything thrown at me. As the age of four began to unfold, our name crept to the top of the list for services to start in our home. As excited as I was for these services to start, I quickly felt overwhelmed by the presence of outsiders in our lives multiple times per week. Gracin would become worse, much worse, after these individuals initially got to our home and within the days following their departure. It felt like an intrusion into his life, even though they meant to give us help and new ideas. For a child whose parents were, themselves, devoted to giving him all of our energy and devotion in life, the services provided by various agencies were just more things for him to have to get used to. As a result, I quickly dropped all of the services that were aimed at giving me ideas instead of hands-on helping him. The services that we kept were only a few of the ones recommended. The ones I felt that were the most helpful for our exact situation were those provided by an occupational therapist and the special needs teacher who worked one-on-one with Gracin. I wished I had learned of these services sooner because I later realized these services are available to very young children. Special needs services are a very touchy subject. Although they are put into your life with the aim to help an individual family, some individuals will most definitely clash with what a family’s goals may be. It is a very difficult world to navigate through, but one thing I learned was to never be afraid to state my own needs. Personally, I also felt that I had a better experience with a team of individuals who were older and more experienced than me and not fresh out of school. The reason for these individuals being in my home was purely based on need and not a friendship as I saw the younger therapists occasionally attempt to incorporate. There were very few individuals who fit into our lives, but those that did were a God send, and I am extremely thankful. Though the facts will always remain that these children are yours and NOT theirs to do what they want with. Just because it is a government run program does not mean you have to accept it as being the best thing for your child. In Early Intervention & Autism, it states that, “What is important is how often you interact with your child…, not the number of professionals who stream in and out of our house. They can help, but you, the child’s parents, who interact with him 24/7, it is you who make the real difference for the child.” I believe that God was guiding me into the proper ways of raising my own child, and these individuals were just an aid in helping to get us where we needed to be. Justly, they did not need to be in our lives. It was my choice to allow them to be a helping presence in my home. If you truly believe that you cannot do this on your own and are willing to accept the help, then these special needs services are the best course of action in my opinion. Although, if you feel that they are a hindrance to how you are trying to raise your children, then you are free to decline or reduce the duration of those services at any time. They may have their Masters degree and the education behind the science of a special needs child, but as any dedicated parent, you have your PhD in your own child. Life, I will admit, was not even close to easy. I was in constant spoken and unspoken multiple battles with family members who thought their tactics were better for Gracin. This was on top of my own child’s battle of wills, which he felt he knew best. Then there was my own selfish battle in my head where my body fought for what it wanted, and my mind fought for the utmost devotion to my child. Coupled with all of that, we were increasing Gracin’s medication every few months, and it was immensely frustrating. The days following the increase, Gracin would be the poster child for calm, cool, and collected.  Although, slowly but surely as his high metabolism got used to the new dosage, his behaviors slowly came back. It was never his focus that we first noticed dwindling. It was always his hyperactivity where he could not sit in one place without constantly moving about. His sleep was the same. We would have significant strides for weeks at a time where he slept relatively soundly only awakening to go to the bathroom or to, “Tell us a question” once per night. Then, within a matter of just a few sleeps - as we called them - it seemed we took three steps back. Countless nights we would hear the toilet flush as Gracin fell into the wall multiple times and/or yelled that he peed on the floor once again. As he finally proceeded back to his bed, he would then have an almost yelling conversation with puppy - which he swore to us was his quiet voice - for twenty minutes before his body would take over and shut down once again. Holding it all together was an art, but there were times that the arguing brought me down almost to rock bottom. I had daydreams, which I am reluctant to admit, where I duct taped his mouth shut, tied him to his bed, and took a long uninterrupted nap. Thankfully, my conscience would not allow me to do these things, and lots of self-talk, prayer, and phone calls to my husband at work calmed my overwhelmed mind. Countless times I was quite close to bottom, but because of my devoted husband and a select few individuals who I allowed close to us, I thankfully never reached that point. As time moved forward, we were led to what we feel was the root of all of the arguing. I believe that our child truly did not fully grasp why there were so many variables in how we asked him to act. He thought in black and white, and we just were not explaining things to him in that same manner. For instance, if we told him we were getting ready to go to bed, please go to the bathroom, in his mind he felt he did not have to go right that moment, even if he may have to go in ten minutes, so an argument would erupt. Asking things of Gracin was a lot easier on all of us after we learned to write down exactly what we were asking him to do including the time frame in which we expected the job to be done. It was by this way that we allowed his brain to easily process, without any question, the task he was expected to do without an escalating argument. Since Gracin argued because he could not understand why and how we were asking things of him, when he felt they were unnecessary, writing things out was our go to plan. It was now in his black and white, right or wrong mind frame. We had to be the ones to evolve our behaviors to again suit his needs. Gracin did not argue because he did not want to do the tasks we were asking of him. I have come to believe it was because he honestly was not capable of having any trust in us whatsoever as other children do in their parents. His trust had to be proven and changed to what he could understand before he could readily follow through with a request from another person. Although I cannot state that he now trusts in our decisions entirely and does not argue all facts, I do feel at least we have found some ways to prove to him why he should ultimately trust us, even if it takes an undetermined period of time for that trust to be given. In addition to these facts, if someone came over to our house either expected or unexpected, it seemed as if Gracin would immediately try to manipulate the environment and cause as many disruptions as he possibly could to prevent anyone from having a meaningful conversation. Upon further discovery, I realized that this was not what was going on at all. In Ten Things Every Child with Autism Wishes You Knew, Ellen Notbohm describes how a child attempts to establish control within their own environment by their behaviors: When so little is within their control, many children on the autism spectrum experience life as a continuous battle to hold onto whatever power they do have to direct their lives. Their attempts to control may be overt (confrontational, aggressive behavior that looks like defiance), or they may be passive-aggressive (they silently or covertly continue to do what they wish regardless of attempts at redirecting behavior). Your daily life as a typical adult flows in a perpetual, minute-by-minute stream of choices. You take for granted both the array of choices you have and your ability to act upon them. Such reasoning and decision-making skills are much more limited in your child with autism. What appears to be controlling behavior on your child’s part can also be seen as evidence of her ability to think independently and affirm her own wants and needs. Channel these qualities as you work with her to instill decision-making skill and increase the number of choices and opportunities for success in her world. This was one of the hardest and most embarrassing qualities in my son’s young life.  Once I accepted that he was not trying to make my life harder but just trying to regain control over the current unknown situation, we were led to vast understanding and, therefore, growth on both of our parts. During these moments of unknown, it felt as if I had two choices to make in order to react to my child. I could give in and let the behavior happen; therefore acknowledging that he could get away with whatever he wanted. Or I could interrupt talking with our guest and control my child repeatedly. With either option, I felt as if I was letting someone down, but in choosing the latter, I was helping Gracin feel secure and not neglected. Even though I, myself, appeared as if I had to control everything about my child’s life, in reality I had to help my son feel secure. If the person I was talking to could not understand the devotion I had to my child, then they did not belong in my home to begin with. My goal was for the long term, and if the word discipline is ultimately defined as meaning to teach, then who was I to ignore each prime teaching moment. I only wish I had known of sensory integration therapy when my son was younger, so I could have helped him learn to calm his own bodily needs better than I was at that current time (See Appendix E: Sensory Integration Therapy). We, as parents, are obligated to give our children all of our being in order for them to succeed. This means not just being there where we have time and nothing else to do. I feel that we must sometimes deny our own needs in order to instruct our child, especially our special needs child. Loving the Soul Beneath the Autism is available at Amazon.com.

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Copyright 2019 Janele Hoerner