"Loving the Soul Beneath the Autism" excerpt by Janele Hoerner (CatholicMom.com) Life never stays the same. Honestly, the only thing that you can guarantee in this life is that IT WILL change. This was something that almost everyone in my family would try to explain to me, in different variations, when as a little girl and I made vast plans for the future. Nevertheless, I blindly continued to plan for five, ten, and fifteen year increments amusingly expecting them to all fall together perfectly. Time and time again my plans fell out through the bottom, and I was left questioning what I could have possibly done wrong. Remembering back to those numerous conversations, I realize that I never heeded any of that advice until I had a child of my own. As the years unfolded, my husband and I attempted to have control over the world within the walls of our home and our parenting regiment, yet I am not sure if we ever truly did. With each passing day, we were thrown new and different curve balls to which we had to adapt. Life, in itself, seemed to be out to get us on most days, and initially we felt that we were getting nowhere in helping our child. However, from an outsider’s perspective, it was only because we did not see the big picture. Over time, we evolved as we began to stop wishing that Gracin was different or thinking of what he could have been like if we would have done this or that differently. We began to cherish him just as he was. We found ways to rejoice in the tiny improvements that we were able to help him overcome, and, as a result, in the fourth year of his life, our lives began to seem less of a challenge. Therefore, I learned to begin making goals for our future instead of plans, and seemingly those goals were more easily moved if they needed to be. We, as parents, were learning how to keep Gracin feeling safe, while at the same time accepting that we must also change in order to be what our child needed us to be. Consequently, Gracin began to feel more secure in the little bubble of a world that we created for him as he saw the devotion and the respect that we gave his individualized needs over time. This actualized process momentarily bestowed the calm into our lives that we had been searching for. We began to prepare ourselves to slowly begin incorporating changes into Gracin’s daily routine in order to help him break out of his shell. Although we honestly were so happy in all the progress that we had found, I will confess that we were not ready for another upheaval. Even so, despite our newfound niche of security, life had other ideas in mind as my water broke and we welcomed our third son into our lives. As much as we desired our home to continue to be Gracin’s calm, controlled, and safe place, our newborn had his own plans. We had hoped that our new baby would be another calm and laid back child, as was our second child, though that just was not in the cards. He was his own person and instantly made his own needs loudly known. As much as Gracin was enthralled in the excitement of having another sibling, which we prepared him for months in advance, this was, nevertheless, an upheaval into his environment. This was the first major disruption to our finally concretely predictable world, and it seemed to send us all running for cover. The first few nights with our colicky newborn were by far the worst as this turmoil into Gracin’s universe was enough to end every well-adjusted habit, including his sleep, which he possessed. Gracin’s mind would not allow him to stay away from his new brother at any time period throughout the day but especially in the middle of the night. Even though for our new son’s breathing benefit, most nights I slept in a rocking chair on the other side of the house, Gracin still made it a point to seek us out, hourly. Everything in his universe was upside down. We had a new person living with us, Mommy no longer slept in her bed, and if his new brother’s eyes were open, he was crying. Gracin found it necessary to investigate and inform us if his new brother was crying, if he had just stopped crying, or if he believed he needed a diaper change at 4:00 in the morning. It seemed that as soon as I finally got the baby back to sleep, or I finally fell asleep, Gracin came barging into the room just to tell me something that really did not need to be said. It was a mind-numbing process, and although we were happy for this new life, my husband and I felt as if we were being pushed to our ultimate breaking point of sleep deprivation and sanity. I felt as though this new change had ruined Gracin’s security, yet after the first few months, our lives transformed immensely. Gracin loved his baby brother with all of his being and desired to help calm him in every way he could, without my prompting. Gracin read piles of books to him while the baby was both asleep and awake, brought him anything that he thought the baby needed, and sang to him almost constantly to calm his endless cries. As much as Gracin’s help was, in reality, not helpful, it was in those moments that he was learning how to think of another person other than himself. The birth of his brother had actually, without our knowledge, started teaching Gracin how to become selfless. I believe that it was because of this new life and the change that happened by his birth that Gracin slowly began to be molded into a more accepting individual. Through the process of having an extremely needy baby brother, Gracin learned to quiet his actions down a small notch in order to help his new sibling sleep peacefully. Before our new addition, all it would take was one small change in Gracin’s routine to send his body over the edge. Since the birth of our third child, he seemed to understand how important it was to give of himself for his brother’s benefit. It was amazing to see this highly sensitive child attempt to console a baby who had his own set of extra needs, allowing Gracin to feel more helpful. Although we saw amazing changes in how Gracin was accepting his new brother as a constant in our life, this was not what we felt would help him learn to accept abrupt split second variations with ease. We recognized that we had to take the first step in this process because we knew the kinds of meltdowns we were potentially in for. With starting an adjustment in schedule, we were skeptical as to when and how to best begin to incorporate these changes. I believe we were able to incorporate slow changes for our son while still helping him stay in some sort of control by the following ways. As I have related previously, our typical day functioned in a strict format, and we hardly ever diverted from the plan. Here is what our day looked like on a Monday through Friday format: 7 a.m. - Awake and getting dressed for the day followed by a thirty minute show IF he followed all his sleep rules, within reason, all night long 8 a.m. - Breakfast followed by his medication 9 a.m. - Structured playtime along with constant monitoring - we tried to be outside as much as we could 10 a.m. - Organized learning including math, reading, and writing while listening to various composers 11 a.m. - Lunch 11:30 a.m. - Clean up time Noon - Rest time 3 p.m. - Wake up time followed immediately by snack and a half an hour show if he followed his sleep rules during his nap 4 p.m. - Free playtime, typically outside 5 p.m. - Dinner 6 p.m. - Cleanup time followed by all lights dimmed and a quiet down reading books time 6:30 p.m. - Rocking and prayer time 7 p.m. - Bedtime As we began to slowly help Gracin accept change as a welcomed thing, we decided that during the week we would continue to keep his life unaltered at first. However, on a predictable day for him - Saturday - we would have a new unexpected experience that would never be the same. Gracin initially welcomed this exciting new adventure. As long as we were able to discuss the outing with him beforehand all throughout the week, along with what he may feel like and how to handle the new situation, we typically had a nice excursion. In addition to our Saturday change, during the week we started calling different family members on the phone, instead of them calling us, just because we wanted to say hi. By giving Gracin the control initially, he was able to learn that surprises can be a welcomed thing. He could then practice how he would respond if someone did this to him. He enjoyed talking and making someone’s day more joyous, and, as a result, he felt good about himself. We also wrote letters, and as old fashioned as it was, he loved it. He even began to write letters to heaven, on his own, to people we could not talk to any more. He just beamed with pride upon the completion of these small acts. He loved making someone’s day and became more inclined to help another than care about his own needs. We found multiple ways to promote progress, acceptance, and love of others into our son’s mind, which ever so gradually led him out of his shell more than we could have ever hoped for. Daily we began to transform our learning hour in the mornings to not only work on academics but also social situations. We started reading The New Social Story Book by Carol Grey every day while we discussed each story in length. We would talk about why and how the person was feeling, what could have been done differently, and changing each story to our liking or to a situation he could better relate to. This book led us to start working more in depth on helping Gracin understand facial expressions as he learned to interpret the difference between joy, sadness, disappointment, anger, and various other emotions on someone’s face. We created imaginary scenarios for him, such as receiving a gift, giving a gift, encountering someone who is crying, and how to handle the various situations. Therefore, when he gave someone a present, he was improving at interpreting the type of emotion to give back to them by seeing their reaction. Along with some guidance, this led him to start to be able to distinguish various emotions within seconds. Even though it may seem to many individuals as silly or useless that a child needs to be taught how to express an emotion, the reality was that without instruction Gracin would have not been able to process these complex situations on his own. For only one example, crying was always extremely confusing for him. The few times that I let him see me cry, he would laugh. It was not that he thought it was funny that I was expressing my own feelings, but it was truly that he did not know how to respond to my emotions in a typical format. With reading and making our own social stories, we were able to lead our child out of a life of confusion from various emotions into a key understanding of empathy. His progress from these small one or two page scenarios was amazing as he learned how to express compassion and other emotions. Furthermore, we started an online reading program for a very small fee, in relation to its content, called Starfall. Together we did a reading lesson a day. We found Gracin first grade math workbooks, and he also began memorizing notes to music in the form of flash cards. Our hour a day of learning was packed full of things he found fun, while he listened to various composers and jotted down the notes he believed were in the melodies. Even though we called it nap time, rest time really became his own self-taught learning sessions as I would allow him to take in a book, a writing utensil, and a math book. We, of course, had some setbacks in the process, such as math equations being written on the wall, small chunks of that same wall being dug out with his writing utensil, and some self-exploratory behavior. After careful explanation and almost constant monitoring through the video monitor, these behaviors were controlled over the course of his 4th year as we tried our best to give Gracin what his mind craved so desperately. His brain was composed differently than most other children’s, and that meant that different treatment was in order. During a time that most children would sleep for naps and also at night, Gracin spent his time writing music notes, math equations, and doing anything he could at all to fight his body’s need for rest. In his room there was only a twin mattress on the floor - for safety. During rest time, I would allow him to spin as much as he wanted, lie upside down, and just be himself for a one hour period. In The Way I See It by Temple Grandin, a world renowned autistic writer, she states: For most of the day I was forced to keep my brain tuned into the world. However, my mother realized that my behaviors served a purpose and changing those behaviors did not happen overnight, but gradually. I was given one hour after lunch to revert back to autistic behaviors without consequence. During this hour I had to stay in my room, and sometimes I spent the entire time spinning a decorative brass plate that covered a bolt that held my bed frame together. I related with the author that my son also needed a specified time each day to not be corrected by the behaviors that most others did not understand. Even though we were promoting growth in our child, we did not want him to feel neglected of the things that made his body feel secure, such as spinning. I wanted to allow him to feel a sense of control over his body and actions. I did not want to change who he was! I, myself, hated feeling jittery, and because I knew what that could feel like from drinking a very sugary drink, that feeling day after day could never bring peace to anyone. Although because I believed he felt much worse than what I could from drinking too much sugar, I was left pondering how to tweak our day to allow his mind to feel secure while also giving him room to slowly accept change with each passing day. As we have learned throughout Gracin’s life, we were constantly in the process of training his mind to accept various unexpected changes. At the same time, we were also attempting to train his personality. Hence, his 3rd year was more of establishing a control over his environment. The 4th year was a training of how to interpret modification to the schedule and the accompanied feelings with those changes. Even though we were immensely better as a family with these small changes, I felt we were nowhere near where we wanted to be. I will admit that I blamed myself. I was convinced that I could do more, read more, and prepare more. Upon feeling the walls closing in, I reluctantly forced myself time and time again to come to the realization that this child with whom I worked during every moment was never going to think the way that most children did. Over time, I realized that I was the selfish one. I was the one who expected a child with extra needs to fit into the rigid attributes that I envisioned in my head. It may have been my job to help him learn and grow into a kind hearted adult, but it was never my job to force him to become a child with a different personality. I will admit it was an extremely delicate balance of constantly keeping ourselves in the proper mind frame without overstepping our parental boundaries. We had to focus on the positives in our child and not let the negatives outweigh the progress we were making. Our Gracin had so many positive attributes that parents of other four year old children could not even begin to fathom. We continually worked on all of the positives we could, which for Gracin were reading, mathematics, and music. As I fine-tuned my approach to my unique child, I began to see how well he benefited. Since we had become a family of five, counting three young boys under five who demanded a lot of attention, we, as parents, honestly were very close to exhausted at almost every point throughout our days regardless of what special needs any of our children possessed. Therefore, we explained to Gracin that each person has his or her own set of needs, and just because Gracin may, himself, feel that his needs were the most important, they were not any more special than the other members of our family. I continually explained to him that I remembered holding, walking, and rocking baby Gracin, just as I was now doing with his new sibling. As he was led to understand that everyone has their own needs, he readily accepted that he felt his brother’s needs were just as important as his. We were raising our special needs child to not feel like he was privileged by getting the attention first. Even though most times he did get the attention first, he did not need to know that was the case. Gracin was being taught to be respectful, kind, patient, cooperative, and loving. Loving and respectful were the two big words that we talked about daily. At the end of the day, he did an amazing job attempting to live out those attributes - most of the time. Honestly, one of the hardest things for me to accept was knowing that deep inside my son’s heart was a little boy who wanted, desired, and tried his hardest to listen. He loved his brothers and parents in the best ways that he could, even though he continually had a hard time expressing those same feelings. He was not a brat or a kid who loved pushing boundaries and disobeying us. His brain, frankly, just did not allow him to consistently focus on what we were asking of him. Carrying our requests out in a calm and organized manner took lots of patience on our part, which brought us to become more loving in our actions because of that fact alone. By way of these struggles, we also helped Gracin develop compassion and service of another in multiple ways. We were always asking him to help Mommy with getting this and that or to do something for Daddy such as getting the phone or a tissue. He loved completing small requests, and it helped him feel empowered. As a result, when we would ask larger things of him, he could listen to our request and carry it out in the exact way we requested. Sometimes we even would change our request half way through a mission, and in this way, he also slowly learned to adapt to changes in his world. You see, I wanted my child to feel his emotions and know what to do with them, instead of letting them take over his entire world. As life moved in the direction of establishing better focus and teaching him how to love in its purest form with compassion, we all grew in the ways we needed to. Gracin is a person with feelings who desires to show them to others yet really needs extensive guidance in order to listen, follow though, and explain to others how he feels. Looking at the totality of the 4th year of progression, I feel as though we were able to help Gracin adapt to various changes with the small, guided responsibility and tasks that we called upon him to complete. Each night, therefore, I was able to optimistically go to bed with the intention of being able to sleep eight hours continually throughout the night, and I was amazed that a good portion of the nights we actually attained this goal. Our days had bumps along the way, but as long as we could prepare Gracin before an unexpected change to his routine, life continued on with minimal perplexing issues. Loving the Soul Beneath the Autism is available at Amazon.com.

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Copyright 2020 Janele Hoerner