"Loving the Soul" Chapter 12: Discovering Autism

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"Loving the Soul Beneath the Autism" excerpt by Janele Hoerner (CatholicMom.com)

As much as I wanted to believe my child was your typical two year old, he just was not, for many reasons. Honestly, the most disheartening reason was his inability to show love to others. This sounds obscure to state about a two year old, but it was true. He did not know how to show he loved a person. He had no preference over his parents to strangers. He hated to sit in close proximity to anyone, and he certainly did not want to be cuddled, kissed, or hugged as he progressed in age.

There was one exception to the rule that changed his entire personality, and that was when he got sick. It was very odd, but his whole personality evolved when he had a slight fever. This led to many discussions between my husband and me as to why he was calm and peacefully happy only when he was sick. Now I am not talking about sick like he could not get out of bed. He, thankfully, never got that kind of sick. It was just when he had a slight cold with fever just over 100, his whole personality changed.

When he was sick, his mind, as a result, was put to ease, and he could just be. He wanted to be curled in our arms and read books, roll a ball back and forth, and act as a calm child typically would. It was a very strange thing that baffled me and led me to question more what was going on with my little boy. How was it that only when he was sick, was he calm, sweet, polite, and communicating what he wanted to say respectfully?

I wanted to experience this calmness in my child when he was not sick. I did not, as a result, wish he were sick more often. I wanted to restore the calm he experienced while sick into my child all the time. I did not want to be ultimately frustrated and anxious with my child’s every movement. I desired to adore his presence. He moved too much, and I needed answers. I was only a month away from having a second child, and I needed to know what was going on in my little boy’s head.

Upon researching this strange occurrence on the internet, I stumbled across my first article that illuminated a light bulb in my head to the word autism.

According to a finding over the past few decades, parents and clinicians have observed that the behaviors of children with autism spectrum disorders (ASD) tend to improve, sometimes rather dramatically, during a fever. Longer concentration spans, increased language production, improved eye contact and better overall relations with adults and peers have all been reported. In a study published today in the Journal of Pediatrics, researchers from the Kennedy Krieger Institute in Baltimore, Maryland confirmed, for the first time, parent and clinician reports that the behavior of children with ASD improves with fever. The study evaluated children with ASD during and after an episode of fever and found that fewer autistic-like behaviors were recorded for children with fever compared to controls (Source: Kennedy Krieger Institute).

It was not just in my imagination. Here it was in my hand: a study that explained all of the questions that I had for my son, and my Gracin fell into the results of the study’s findings. My mind was immediately taken back to the initial conversation with Gracin’s doctor at his 18th month checkup when we filled out the M-CHAT or the autism questionnaire. Talking over the results with the doctor, I felt reassured that we passed that one, but was my relief justified? Thinking back, I never felt compelled to talk to the doctor about his toe walking, obsession with loud noises, sensitivities, or anything of the like as we went through the appointment questions.

I felt deeply saddened thinking that maybe I should have talked the doctor’s ear off about every minute detail that I thought was different about my child. How else would he have been best able to evaluate what I was telling him? I was so worried about his activity level and impulsiveness, while being impressed by his language skills, that I pushed his sensitivities out of the conversation. As a result, his doctor just reassured us that these behaviors were how boys were. Leaving the office that day, I felt comforted that we were doing everything in the correct manner for our child, and I just had to accept I did not have the calm child I had always envisioned.

Although now, in this moment, after reading the article I held in my hand, I felt that he possibly could have autism. I had only ever heard of autism as being a type of disorder where children do not speak or speak very little, but that was not our Gracin at all. As I looked into autism and ADHD late into the night when the house was silent, I was astounded at what I found. Autism existed on a very large scale that included low functioning and high functioning as well as everything in between. I read and I read and I continued to read until my eyes could not be held open any longer.

Waking up the next morning, I just chalked up my night of searching to my overly obsessed mind projecting a condition onto my child that he could not truly possess. Though as time passed, the term kept coming back into my viewpoint. In a brand new study printed in Pediatrics, Dr. Amir Miodovnik, a developmental pediatrician at Boston Children’s Hospital, correlated something that I always questioned in my own mind and heart. I now feared that my son’s ever moving impulsive tendencies were masking a deeper rooted disorder: autism. Dr. Miodovnik states that, “ Parents who believe that a child younger than 5 has ADHD should take their child to a developmental pediatrician, rather than a family physician, to make sure that possible autism will not be overlooked.”

It was, of course, to no fault of our family doctor that my son’s symptoms were missed.  We, as parents, should have pressed the issue more to explain the extent of the activity of our tiny child. We should have seen a more specialized doctor and not accepted that our little boy was functioning typically, when in our gut we knew something was unique about our toddler.

In the same study, an alarming finding states that, “Autism and ADHD are very different neurological conditions, but they share a number of symptoms, genetic factors and brain pathways.” This article states exactly what we were seeing in our child, yet we were experiencing it four years earlier. So yes, it may have been my fault that we missed the signs, but even though I blamed myself, I truly could not.

I was exhausted by the behaviors of my child, but most parents talk of how their kids tire them out. I have always felt disheartened because I did not press the initial doctor more because most children did not feel the same way Gracin did with his sensitivities. I did not understand why Gracin did not enjoy playing with toys, why the wind made him scream, why he walked on his tip toes, or why I could never read an entire book to him. Those facts aside, I still adored my little boy. My Gracin, with the wispy blonde curls and mesmerizing green eyes that reminded me of my father’s own eyes, which I always desired to have for myself. This child still was part of me, and I did not want to complain about him. I only desired at the deepest part of my being to enjoy him.

With winter being at its most brutal point, we were cooped up inside too much, and our child was not reacting well. It was as if he was a racket ball unleashed inside our home. It seemed he never stopped moving or talking. I could not understand how a little person who was so small in stature, could talk so much and so well. He was speaking in full sentences now at 2 ½ with a vocal tone that was different than a typical toddler’s.

He spoke with authority and knowledge, and that, in itself, made you forget how young he truly was. I even had to keep reminding myself of his age on various occasions. As he talked, he would dance around and constantly had to be moving different limbs simultaneously. He always held a joyful smile with burning anticipation radiating from his wide-open eyes.

He continued to not play as a typical child would and found enjoyment in counting his objects while dancing around them or spinning them. His body would not allow him to slow down enough to focus on playing with toys, even if he fully desired to, so there was no point in owning any. All he found enjoyment in was turning on light switches and spinning rolls of tape.

In attempting to find something, anything, to hold his interest so I could get household chores done, I turned to television. Here was something that almost all children enjoy. Gracin could care less. I searched and searched, but could not find any shows that would hold his interest other than one: Dora the Explorer. It is a high-energy show that encourages movement and has repetition of words, sounds, music, and people. Although it was the only show that held his interest, we could not bear the aftereffect. The “break” it bestowed on our lives was outweighed by the overstimulation it caused.

There had to be another thing that could hold his interest other than that show, but I felt I was missing it. One evening while waiting for my husband to get home from work, I collapsed on the couch exhausted and frustrated. I had been encouraging Gracin to play with toys all day to no avail. Gracin ran to the window and positioned his ear up against the glass. He heard my husband coming down the street and started singing a song at the top of his lungs, the exact song that was coming from my husband’s car. I could not hear the music, but Gracin could. Even after the car was turned off, Gracin continued to sing the song while jumping up and down on the windowsill to catch a sight of his Daddy. To our surprise, he recognized the flow and rhythms of complex musicians, and we had no idea the way this would play into our lives in the future.

Gracin did not, in fact, enjoy typical children’s music for more than a few seconds, but he could sit and listen to an entire Mozart symphony with its complex rhythms like an adult. We had finally found something that would instill peace in our child and help him stay calm. This was the perfect thing to keep his mind focused. I assembled an iPod entirely for his enjoyment. I added Mozart, repetitive prayer, and music with complexity for his growing mind. At night, Gracin and his Daddy sat together sharing one earbud listening to music as they bonded. During the day, Gracin and I enjoyed listening to various composers together while encouraging his focus on play. Music with rhythms and calming tones were what his mind needed so desperately. It was in those types of songs that we saw his body change slightly in its movement as his mind was able to focus on something else other than utter chaos.

There were so many things going on in such a small time period in his world that we just did not know what to expect. We were only beginning to discover how calm of an atmosphere our child needed, and we had no idea how our voices and actions could be affecting our child.  Gracin would have benefited immensely to grow up in a home 200 years ago with no noisy toys, no cars passing by, where everything was calm and relatively predictable. Although impossible to perform time travel for our son, we knew we had to change our world to instill that same calm into his life.

Since every toy we owned would be pulled out within five minutes of him awaking in the morning, I knew we had to make a change. Our child’s brain could not handle a toy box filled with toys as it over stimulated his mind. The toy box was daunting. Toy boxes and toys with noise attached only overwhelmed our son. These toys were only pulled out, turned on, and left in a pile behind him, littering my floor as he walked on to the next thing. I had not even gotten breakfast ready and already I, myself, was over stimulated. How could he not be?

I could not figure this child out! I was at a complete loss being alone with him nine hours a day when my husband was at work, and I could not imagine how I would care for another child soon. I loved this dear little joyful smiling boy with every part of my being, but I could not go on like this. I was saddened because I could not even find happiness in playing with my own child because of his short attention span. One day, out of total frustration, I put away all the crayons, finger paint, Play-Doh, paint, and paper and felt awful. All the items that I always felt I could do with my little child, and all the thoughts of how I envisioned our lives, just soared out the window with my patience.

Later that day, in attempting to play with trains on the floor for what felt like the millionth time, I broke down and cried. I could not understand what was causing my child to not act as a child at all. How was it that things as simple as trucks passing by, bubbles, finger-paint, or lotion upset my child? Why was it that the things every child loved, Gracin despised?

The only two activities that he truly enjoyed were running and talking, although talking would have won every time. Since his vocabulary took off at such a young age, it was not long before he was talking constantly. He talked to himself, talked in his sleep, talked while he was doing everything. It felt like he vocalized every thought that popped into his head. It was as if he could not understand that some thoughts were not meant to be spoken.

I had never met a two year old who would interrupt and control a conversation quite like this. Yes, most children do not understand how and when to come into a conversation, but this was different. He would take over, and it no longer mattered what you were saying because he either said it for you or the person you were conversing with simply forgot that you were even talking in the first place. Gracin always wanted to know what you were saying and demanded it with his famous line: “What you saying?” This was not once in a while or a cute thing. This was day in and day out with every sentence. This little boy would rather be a part of an adult conversation than play with toys. There was no way that being attention-deprived was at the root of his behavior either because I was with him constantly, and all we did was spend time together. I was never the parent who ignored him to watch TV, talk on the phone, or be on the computer. Those things were off unless he was asleep. All waking hours were spent with my attention on him.

It did not matter if you tried to ignore him while you were talking either. He would just climb up your body to look into your eyes demanding your attention. This child had no social fear, and he was OVERLY social. How did I have a child who was so opposite of me? It took me years to figure out how to even enter into a conversation and feel like it was the appropriate time. I never wanted to offend other people and would have rather kept my mouth shut than do anything to step on anyone’s toes.

My husband and I were incredibly frustrated. Most children are very good at blocking out their parents while playing with their toys. They do not care what their parents are talking about, and when the parent tries to engage them in a conversation, they give one word answers and continue their play without even looking up once. Not this child. What was going on?

Most children have huge imaginations that make childhood a wondrous time of pretend play with dolls or cars, and that is all that matters in their young life. Not Gracin. We could not even have the simplest of conversations, such as asking what time it was, without his input. It became quite a large problem for us. Little did we know it would continue well into our future. We tried our best to only talk to each other once he was in bed, but by doing this, we were not teaching him anything. At the same time, we did not want to give him the impression that we didn’t like each other.

As time went on, he would interrupt just to say he had nothing to say. He would then pause and begin to stutter only because he was thinking of what he could say next without losing the battle. He had nothing to say; he just wanted to be the center of attention. He was and needed to be the center of everyone’s world. We did not want to raise a child who thought he was the greatest gift to the world. We had to do something! This problem may even seem trivial to most individuals, and maybe we should have let it go, but we did not know for how long it should be ignored. Until he was five, starting school, and did not know how to let any other kids talk?

This was the time to lead by example and not get frustrated with our son for expressing himself, but the balance was difficult! We attempted to have him say “Excuse me” before he would speak, but he would just keep repeating it constantly during a conversation. To his credit, he was polite. It was just that he was not picking up on the cues of how often to speak. He did not understand the parameters and boundaries that most children pick up on very easily without instruction. He understood speech and could easily memorize what to say. He just did not get anything past the “coached” behaviors we taught him. It was as if he just said everything in his head because he had no idea about the next thing to say. We could not play, talk, eat, or interact the way we wanted him to, and my gut feeling that something was wrong just kept getting stronger.

I must say I felt more like an utter failure at being a mother than anything else on most days, but we were still having more good moments than bad at this point. Though as he got older, everything seemed to get more and more difficult. He began to move so much that his face would get flushed when we were only at our daily routine. Even though I would love to say that his sleep duration continued to be in the optimal range, that slowly diminished. For naps, even though he spent a quiet time in his bed in the afternoon, he was only sleeping two, maybe three, days per week, if we were lucky.

I learned to turn my phones off and unplug the doorbell. The house became so quiet you could hear a pin drop, and the slightest noise during a nap, such as a lawn mower or snowplow, made me cringe beyond belief. Even with a noise machine running to almost the highest degree in his room, a person still could not enter the room below him during his sleeping hours. I relied heavily on his video baby monitor in order to keep an almost constant eye on his napping routine.

Looking back on that time period of our lives, I truly felt that I did everything in my power to help Gracin grow. My days were spent giving him stability where he needed it most. I changed everything about how we acted day to day and moment to moment. We did everything for this tiny soul who I knew could grow up to make an impression on the world. At each day’s end, we reflected on what we could do differently as parents to help our son and apologized for what I felt was done wrong. It seemed that our lives had just begun to bud, and, as we welcomed home our new addition to the family, we were elated with joy. Unfortunately, life did not stay on the upswing for long.

Comparably, nothing in my son’s life was quite on the traumatic side, such as what happened a few months before his third birthday. Up until that point, he was really just a very busy child who never stopped moving. He had never before presented any violent tendencies or the like. He was kept relatively close to us and was always with a family member if we had to be away for any reason, which was not much. This moment in particular will never leave my mind. This was the point when I knew we needed real help, and we could not wait until he was in school as his doctor had suggested.

We had my grandparents over. As I was cleaning up from dinner, I noticed a drip coming from the ceiling. Since my grandfather was always the one to jump in and help in any situation, before I even turned around to tell my husband what was happening, my grandfather was on his way up the steps. As the moments unfolded, my husband was preoccupied with helping upstairs while I finished cleaning up, and Gracin was running back and forth in the living room in front of my grandmother who was holding the baby. Since I knew Gracin would not go to sleep with visitors in the house, I was not even going to bother trying to put him to bed until they left. I told Gracin he could watch a TV show until my grandfather was done fixing our plumbing issue. He was thrilled.

I still remember him, clear as day, climbing up so excitedly next to my grandmother to watch Dora. I took the baby from her arms, and Gracin grabbed his leg gently to kiss him before I put him to bed. I bent down and looked Gracin directly in the eyes. I explained that I was going to put his brother to bed, and he was expected to sit on the couch until I returned. My grandmother reassured me that he would be fine and to take my time. I felt comfortable for the most part with her watching him with me only footsteps away, but I was still skeptical. To this day, I wish I had NEVER left him alone with her.

Moments after walking up the stairs, our lives suddenly took a new turn. Our sweet little son, whom we thought was just hyper and filled with undrainable amounts of energy, did not seem so sweet anymore. I had just completed dressing the baby for bed when I saw my husband and grandfather beginning to go down the steps. I felt relief that my grandmother was only alone for moments with our rambunctious son. My relief did not last long, though, as I heard my husband run the remainder of the way down the steps. I immediately felt sick to my stomach as I also ran downstairs to see my husband ripping Gracin off of the couch. I had never seen him as upset as he was that night. Gracin was standing on the couch kicking my grandmother in the chest repeatedly while she begged him to stop.

I had only been upstairs for five minutes at the most, and he had done this! I was so worried about my grandmother that I really paid no attention to anything else. She reassured us that she was absolutely fine and kept saying that Gracin was just trying to play with her, and he did not mean it. I had a hard time justifying the behavior. As we placed him in time out, they voiced their disapproval in how we were handling the situation. They were defending a child who had just kicked an older woman at least three times in the chest. What type of parents would we be if we did not punish him for his behavior? He was going to be in time out, and there was just no way around it.

Before they left, we had him apologize to my grandmother. When he was asked why he chose to do something like that, he responded with a smile, saying he just wanted to. How could this child look at us straight in the face and say with a smile that he just wanted to kick someone in the chest. He thought it was funny, amusing, a game. We needed help, fast. I knew that this child was not just hyper. Something physiological was going on. We could not and we would not let this type of behavior slide. I was going to do everything in my power to make sure that this child would never hurt anyone again. I had already been very limited in the times that I had been away from his side, but now everything had changed.

The next morning I made the first phone call to start our journey in helping our son to a developmental pediatrician. In my opinion, my sweet little boy was gone, and, sadly, I now looked at him as a potential danger to everyone around him. I would not walk out of the room anymore without him by my side. I would not trust him alone with himself while I went to the bathroom for a moment. I felt that I couldn’t even trust him around anyone in the family. We were appalled at his behavior, and we could not understand it at all.

We received criticism from some that he was just a kid, and kids do stupid things.  However, I was not going to let him hurt anyone – no matter who they were. It seems trivial, but I had to do something to express my anger towards him, so I cut his hair. I remember feeling anger that I had never felt before radiate throughout my bones as I snipped the baby curls off his neck. He was not acting like a sweet little boy anymore, so he did not deserve these sweet little curls. It may sound harsh, but my baby had hurt one of the most meaningful and wonderful people in my life, and I was mad. I had never before shown him how mad I was, had never screamed at him or smacked him out of anger, but I needed to do something now. As I put ear buds in his ears and got out the shears, I shaved his hair down to nothing.

Watching those curls fall to the ground, I cried and cried. I may have cried because of what had happened, but I felt like it was because I had screwed up everything. I blamed myself, and as those pieces of hair fell, I looked at my life falling to pieces. I felt a great deal of regret. What did I do? Why did my son find joy in inflicting pain on others? What was I to do? Looking back, really I had nothing to cry at, but wrapped up in all of the emotion of his first violent episode, I only knew how to cry.

We know all too well that with life changing so rapidly it is easy to miss or ignore behaviors because they are inconvenient at the time, difficult to accept, or hard to explain. There are too many excuses, too much to do, and not enough time to work with our children in the demanding world in which we live. Most behaviors are ignored and pushed aside until one happens that can no longer be ignored, as we experienced. We had convinced ourselves that he was just bored with only an adult as a playmate. As he aged, we thought his attention span would increase, but we were wrong.

There was something else going on in his mind that needed a heightened level of attention. I was now forced to no longer ignore his “quirks.” I could not be blinded by a parent’s love for her child and not admit that something was different in his developing mind. I had to use the love of his soul, the love of his person, the love I did not feel- though knew I possessed – in those passing moments to push through the anger and give him what he truly needed. He needed help for his mind. Yes, he could still have prayers and be given love. Though what he needed more, at that current moment, was not what typical children need. Gracin needed something more.

Loving the Soul Beneath the Autism is available at Amazon.com.

Read more chapters from Loving the Soul Beneath the Autism.


Copyright 2019 Janele Hoerner

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About Author

Janele Hoerner is the author of Loving the Soul Beneath the Autism: An Interior Analysis of the Impact a Special Needs Child Bestows upon the Family. She wishes to help all individuals to become selfless by the presence of special needs individuals in the community. She lives with her husband and their five children, two of which are on the Autism Spectrum, in central Pennsylvania. Visit Janele's blog at Loving the Soul Beneath the Autism.

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