"Loving the Soul Beneath the Autism" excerpt by Janele Hoerner (CatholicMom.com) Chapter 14: Our Reset Button Gazing deeply into those large, green, and wide-open eyes at 3 o clock in the morning for what felt like the millionth night in a row, I once again questioned everything. My mind encircled itself as I begged my child to close his eyes once again to allow his body to fall back to sleep. Yet, all I heard countless nights in a row was, “I not tired Mommy,” “I already slept,” or “I don’t know how to close my eyes.” My attempts at explaining that two, four, and six hours of sleep were not enough rejuvenation for a tiny body were close to useless. To no avail, a few hours later the process would again be repeated. As my husband and I rotated the sleep routines, we became just plain exhausted. Our youngest son, at this point, was sleeping peacefully twelve hours throughout the night, yet it seemed that there was no end on the horizon for our Gracin’s sleep habits improving. Gracin truly believed he was not tired. What bothered me almost as much as the loss of sleep was how our child could not understand how to close his own eyes. We could not understand how he honestly did not know how to do this, yet we had no idea how to help him. We all were at a heightened breaking point as the dark circles under his eyes were in fact becoming black dark bags. Gracin’s brain would not allow his body to rest in this current situation, and we ultimately were discouraged for the future. I felt as though my son, and we as his parents, were being tortured. I had heard of children who woke in the middle of the night to go to the bathroom, because they had a nightmare, or wanted to sleep with their parents, but a three year old who desired to sleep in two hour sleep/wake intervals was unheard of in my mind. Exhaustion loomed over all of our heads, but, somehow, the only one who seemed to be unaffected by it was our son! In fact, he seemed to receive more energy with the less sleep he got. I felt as if I was failing him as a mother. I practiced having him close his eyes during our daily routine but quickly became convinced he truly had no idea what closing his eyes meant. On top of that, he did not even understand many of the facial expressions that I asked of him, such as smiling, making an angry face, and the like. I was not only lacking in energy from the situation, but I also felt as though a wedge was placed between my child and myself. I could not understand why touching Gracin’s hair, rubbing his back, or picking him up made him so tense. I felt as though I could do nothing right for his person, even though I wanted my loving embrace to be enough to fix his entire world. I prayed, oh how hard I prayed. Yet, I felt, at the time, that I was receiving no answers. I knew that I could not just sit around praying for a miracle, even though a miracle to heal all of his sensitivities was what I wished for more than anything. Something had to be done. We could not live like this, scratch that, we refused to live like this any longer. The stress was pervasive, and I could no longer subject our family to this pain day in and day out. We had to get some answers, but really, was a psychiatrist our solution? I felt so torn! I wanted a reset button, a large red magical button that would restart our lives yet still provide us with the knowledge we had gained these past three years. Unfortunately, that button did not exist. Although, resetting our lives while remaining at our current point was, in fact, the best course of action. As strong as I attempted to be, I slowly began to be worn down by my own lack of sleep. When I caught sight of myself in the mirror - that I can promise you I avoided like the plague - I would become sullen. I saw my own dark circles, and I felt as if I was aging greatly by the minute. If it had not been for my husband’s loving devotion, I may have sunk into a deep depression because I began to have thoughts of horrid proportions creep into my mind. My husband was my stronghold, my rock, and my stabilization. He guided me to seek comfort in God instead of the earthly comforts I felt myself seeking. It was difficult, yet I began to find solace in reading small chapters out of the Bible in those long dark days. One of my favorite quotes on life’s struggles is from 1 Corinthians 10:13 where it states that, “No trial has come to you but what is human. God is faithful and will not let you be tried beyond your strength; but with the trial he will also provide a way out, so that you may be able to bear it.” As I read chapter by chapter of the Bible, I became convinced that the man who I married was not just the man with whom I chose to spend my life. I truly believed he was also placed on my path as the way out of my old life, help with raising my Gracin, and finding the correct path for myself in relying fully on Christ. Yes, I was being tested in the darkest hours of the night when my will was at its lowest points, and I was more readily to snap. This, though, was just another trial I had to bear. This trial led us to find ways to help this child, whom to us was gifted, to find the techniques to reset his own mind. As God was my way out, I was my son’s way through this life to his eternal destination. We knew that his life was not going to be easy for him or us. It seems to be, that in this life, the largest struggles sometimes produce the strongest people. I felt as if we were hitting our lowest points in order to lead us into acknowledging that we really did need the specialist. We never wanted to be the parents who gave their child medication, but everything was brought into question at this time. As we resolved to at least meet with a specialist, I gave up everything that did not need to be done. Consequently, we truly functioned in basic survival mode. I cared for my children during the day, read bits and pieces when I could, slept almost every moment that my children did, and the rest of life just had to wait. I developed a very basic schedule for our household duties, and if I could not do what needed to be done for that day, my husband took over after he got home from work. We ultimately relied on each other to pick up where the other one could not. Our nights dragged on slowly and seemed to never end. Our days, frankly, were not much better. I could think of nothing to keep Gracin occupied. It was an awful feeling to have a house full of toys with not one toy being played with by him for more than a few moments at any given time. He had no interest in typical children’s toys; although, he was rarely seen without his tape roll in hand or standing at a light switch. These facts seemed to show us that he could hold sustained interest in certain types of items, but we could not understand his fascination with his chosen items. I did not fathom his obsession with spinning objects or the control over the light switch, but I attempted to find ways to have growth within his preoccupations. In a basic attempt to help him slow his bodily movements and actions down, I began counting out everything for Gracin. We counted steps we took, pushes on the swing for his baby brother, laps he ran around our yard, times the tape roll spun, and anything else I could think of. After seeing how incredibly easily he learned counting, we purchased Gracin his first watch. Who would have thought a watch, such a common thing for adults, would bring such enjoyment to a small child. His first digital watch literally never left his wrist, and since he was already able to count to at least one hundred while recognizing most of those numbers, his watch helped him understand what time it was. As a result, he was then able to know when he awoke in the middle of the night, if he could now get out of bed, or if he needed to go back to sleep. The watch helped us immensely because it was the reminder his little brain needed to have some control over his world. At the same time, he was in the process of discovering how to get out of his crib, so we had yet another transition ahead of us. Thankfully, I found a lifesaver called, My Tot Clock and this alone made the transition from crib to toddler bed quite close to flawless. Within a few hours, I was able to roughly teach Gracin how to read not only the color coding system of the My Tot Clock but also how to read the hand directional of the analog design. This clock is so amazing that I think all young children should have one. My Tot Clock gave Gracin something to listen to and focus on as he drifted off to sleep, so he was not lying silently in the dark after we said our good nights. The clock’s blue and yellow lights let him know when it was okay to get up (yellow) and when it was still quiet or nighttime (blue). It also read him a bedtime story, played music, and gave white noise all throughout the night. Honestly, I wanted to give the inventor a hug when we received it since we saw immediate improvement in our son’s sleeping habits. Even though we were seeing these gains in his nighttime sleep, we knew we could do more to help Gracin sleep more continually throughout the night. He was still only sleeping in two-hour increments, and lying there awake during the night while we slept, even though he was quiet, scared me more than anything. We discussed putting a lock on the outside of his door to keep him safe in his room, but I knew there had to be a better answer. I was frankly scared to sleep even though sleep was what my body craved most. After reading Dr. Weissbluth’s book once again, we decided to implement an extremely early bedtime to reset Gracin’s internal clock. As I read, a light bulb illuminated in my own mind as the following words brought comfort to my overwhelmed thinking: “Try a temporarily super-early bedtime to help him wake up better rested…Often, the early bedtime will help erase his sleep debt so he is more able to relax.” The book only advised this for a child under three years of age, but we felt we had to try anything to help our child sleep better, both at naps and continually throughout the night. Although it sounds harsh, it WORKED.  Even though this method was aimed mainly at reestablishing an afternoon nap routine, we saw positive night sleep benefits as well. In addition, we also got a big dry erase board, as suggested by the doctor, tweaking the “Sleep Rules” from his book to our own liking. We also moved Gracin’s bed into a room that directly led to a bathroom so that he could go to the bathroom without needing our help in the middle of the night. The following are the rules that we developed for Gracin’s sleep:
  1. Lie down
  2. Stay quiet
  3. No kicking or yelling
  4. Close your eyes
  5. Go to sleep
  6. Do not get out of your bed unless you have to use the
bathroom (only 1 time)
  1. Half an hour show or game if you follow all your rules
  2. We will watch you on the monitor and keep you safe
  3. Mommy and Daddy love you
  4. God is also going to watch over you to protect you and
keep you safe After all of the changes were in place, we began to implement his new routine the following day. After dinner, I turned all the lights in the house down to a slight dim. We had a half an hour prayer time combined with rocking, and then it was right to bed at no later than 5:00 p.m. We did this for two weeks. Then gradually, using the clock, the rules, and lots of reminders, the bags under Gracin’s eyes significantly diminished. We were amazed with how much improvement came from an earlier bedtime. Because Gracin was still waking up in the middle of the night two to three times, he was given a rosary, and we encouraged him to pray himself back to sleep without our intervention. Naps even improved. He was quieter and calmer and napped three to four times per week for an hour, which was a huge gain for us. After three weeks, we delayed his bedtime by ten minutes each night until we started seeing it affect his sleeping pattern. We concluded that he slept the best from 6:00 until 10:00 p.m., and since we were not willing to sacrifice those four straight hours of sleep, we kept his bedtime at 6:00 p.m. Most of his third year he went to bed at 6:00 p.m. He continued to nap at least three days per week and continued to have a quiet time daily from 12:00 -3:00 p.m. since we never knew at what time he would allow his body to sleep. This quiet recharge time was good for his mind as he learned to rest, pray, and establish a time to be with only himself. During that time, he was without any outside stimulus. He had no intrusions into his world such as the phone, doorbell, cars passing by, or the unexpected. I learned to make the house silent for him during those times, and we were happy to see how much he benefited from being on such a predictable schedule. He was better rested; his brain was better able to absorb information given to him, and his intellect just seemed to take off. Since I had no idea what to do with my vivacious ever-moving child during the days, I started to teach him a rough Kindergarten curriculum on my own. I quickly discovered that Gracin was already more advanced than I had ever given him credit for. He had always astounded us with his intellect, yet I really never considered him more advanced than other children until the one moment that changed my outlook. One day, as I was finishing cleaning up from lunch and I saw Gracin’s body dart past me after one of our cats, I quickly mentioned that he only had a few minutes left before naptime. Thinking no response would be coming, I turned to finished cleaning, but the response I received was jaw dropping. I still can picture the exact place in our house where I was standing and even what Gracin was wearing when he first stated, “I know Mommy. I have thirteen minutes left.” As I turned to look at the clock on the stove, chills went down my spine in seeing that the time was 11:47 a.m. checking myself to make sure I was not imagining what I believed to be impossible, I walked over to my little boy. Glancing down at his watch to see the same time that was shown on our stove, I quickly bent down to ask Gracin how he knew that. My question, though, was too vague, and he ran off before I could say anything else. Catching my breath, I called my husband at work as I stood there shocked and in disbelief. My husband laughed and said something to the effect of it just being a lucky guess. Though that night, with multiple questions posed at our son, we saw it was more than a lucky guess. Gracin knew exactly how to tell time. Within the days that followed our discovery, we moved on from numbers, to letters, and to putting letter sounds together. We did notice that it seemed he could go much further as he began to become angry when he already knew something that we were asking him to repeat once again. So we moved on to harder mini lessons such as memorizing sight words and ultimately learning to read. Gracin amazed us with his knowledge and his quickly advancing intellect. We were astounded at how easily learning just seemed to come to him. He, in effect, taught himself to read with only my guidance, but I cannot credit it to myself at all. His ability to memorize was flawless, and to this day, I wonder if he has a photographic memory. Although we could not connect through play, we had finally found something that would hold his interest for mere minutes, and we were pleased at that. Loving the Soul Beneath the Autism is available at Amazon.com.

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Copyright 2019 Janele Hoerner