Loving the Soul Beneath the Autism: Chapter 15

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

Chapter 15: Sensitivities, Frustration, and Finally Enlightenment

Finally, after what felt like years of waiting, we took our first step towards the answers we were seeking. I was so frustrated in the waiting game of the pediatric specialists that I attempted to find a way to get Gracin evaluated sooner in a roundabout way. My grandmother had suggested that certain food allergies may cause hyperactivity symptoms, so I thought an appointment with an allergist could not hurt.

We arrived on time and had a twenty minute wait, which may have been expected for a busy doctor’s office, but with each passing second, the stress mounted. Gracin was a ticking time bomb especially when confined to close quarters, and this busy child did not amuse his middle-aged audience. Gracin was always known to get everyone’s attention, so when he began to see that his new “friends” were ignoring him, he tried all the harder to get their eyes on him by being destructive. I will admit that my child was memorable and caused everyone to notice him, but, unfortunately, this was not in a “look how cute he is” way.

My child had no boundaries, and climbing onto a stranger’s lap was just another fun thing to do to get them to look in his eyes, which were half an inch away from their faces. Though within a split second, he would be on to the next person’s lap, and I, helplessly, had no control over him. I could only hold him in my arms for so long. Having him fight and scream that I was hurting him made me feel like absolutely the worst parent ever. I must have looked ridiculous to all of the spectators with my arms tightly wrapped around his little body as he tried to break free from my grasp. With every door that opened, a new pulse of energy would emanate throughout his body as he tried his hardest to break free of my grasp.

When our name was finally called, my eyes were welling up with tears out of complete embarrassment, exhaustion, and shame. Although, in reality, his behaviors were of no surprise to me. New situations changed my child into an over stimulated mess of a little boy. I felt awful that no matter how hard I tried, I could not control Gracin’s actions or help him feel relaxed in new situations. I honestly believe that to an outsider I did not appear as the loving and devoted mother that I actually was. In my mind, I knew I had to be constantly aware of any possible scenario that may happen to pop into Gracin’s head in order to be one step ahead of the game. Unfortunately, by being so constantly aware of my son, I seemed to be a stressed out over-protective parent. It was not by choice that I did not smile or make friendly chit-chat. I just couldn’t. My brain would not allow me to think of anything but what my child was capable of doing next.

As Gracin pulled my tightly wound hand down the long hallway, I felt as if we were the laughing stock of the waiting room. While remaining in our examination room for another five to ten minutes, Gracin literally bounced off of the walls. When the allergist finally made his   appearance, Gracin greeted him with the smartest comment that could pop out of his mouth, demanding to know how old the doctor was. After a small begrudging laugh, I attempted to explain our situation while having a child who interrupted just about every word that I said. Gracin’s face was so close to the doctor’s, he was practically touching him. I struggled with trying to get my words out and correcting my son at the same time, but, thankfully, this new doctor caught on quickly and started only asking questions that could be answered with a yes or no, which Gracin still attempted to answer for me.

The doctor ordered a standard allergy test, which unbeknownst to me did not test for any food allergies. This test was done by little pricks all over his back, and I was warned that most kids cry. Well, to the nurse’s disbelief, my son just laughed hysterically with each prick. Everything was a game to him, so it did not really surprise me, but his pain tolerance was unbelievable. The allergy test came back negative to everything except one mold spore type, and I felt heartbroken. I wanted so badly for this to be our answer.

I believe the allergist saw my frustration as I continued to take an unreasonable amount of abuse from my son who made it known that he was more than ready to go home. As the doctor and I attempted to finish our conversation, in a final effort, he described to me a food diet called the Feingold Diet, which had been known to help children with ADHD. He told me that he could not be sure that ADHD was an accurate diagnosis, but he stated that he saw a food additive diet work wonders on children with various levels of hyperactivity. He also suggested that I take him to a pediatric specialist who could truly diagnose and treat Gracin because he felt that there was more than just ADHD to be concerned with. He gave us a number for a local psychiatrist, and I thanked him for all that he was able to do.

As we left the office that day, I felt hopeless. No diet was going to cure this child, but we had to try something. As I strapped Gracin into his car seat and attempted to quickly place the new number in my phone, I realized that we were already on that waiting list. A tear fell slowly down my check in the ultimate defeat. I could not stand to sit through another doctor’s office wait like the one I just endured. I felt as if we wasted our entire day just to get a number for a place I had already been in contact with. That night, after discussing the day with my husband, we decided that attempting a diet could not hurt our child. As we purchased the expensive diet kit, which looked like it would increase our food bill by dramatic proportions, we said a prayer that this would be what we were finally looking for.

My husband and I decided that we would attempt to follow this diet for twelve weeks before making any other appointments, and we would follow it with no cheating. The first week our grocery bill tripled as I had to re-purchase all of our food staples. On this diet, Gracin was not allowed to eat any of his favorite fruits, and he was very upset. That was his biggest complaint: no berries. He loved strawberries and blueberries, and we had to replace them with pears.

As we sat there eating our first “new” meal, all I could think about was when Gracin was two months old and how he would stare at me whenever I was eating, following my fork with his eyes. It was as if I was eating gold, and he could not take his eyes off of it. I attempted to wait the six months as the doctored suggested, but, one day, when he was around three months old, he stole mashed potatoes off my plate, and that was the end of his waiting game. He made it known that he wanted food after that and would loudly object if you did not feed him food from the table. I believe he would have eaten until he exploded if we had let him. He cherished the time that he ate, and I would always worry that his tummy would get too full. My little baby turned into a very healthy plump child by his first year of age who devoured any type of food that you could imagine, especially fruit. I just did not understand how we got to where we were, eating bland food with no sugar, no white flour, and basically no sweetener at all.

After eating this diet for eight weeks, writing down symptoms, actions, and every detail of our day, we had had enough. We did not see any changes in our son’s behavior other than him begging for his berries countless times a day. I felt distraught as I looked into all the recipes and came across the only allowed option for anything to appease our son: pizza. With not intending to put our family over the edge, I served the homemade pizza only to watch it be spit out shortly after the first bite. That was it. We had attempted the diet, and we felt as if we failed again.  There was no improvement in Gracin’s behavior. The food turned our stomachs. We were done. Although I do have to admit that even though most of the food was manageable, there just is nothing like comfort food.

In reality, I am not sure who objected more to the diet, but one thing was for sure, we could not keep eating like this. As I followed Gracin up the steps for bed that night, I noticed that he seemed more frail than usual. I walked my child into the bathroom and brought out the scale. My heart dropped as it showed that he had lost three pounds. I believe that book was thrown against the wall repeatedly after he went to bed as I once again felt let down. In an attempt to not blame the diet entirely, we had started to see that Gracin was becoming very particular to foods even before the diet began. At the time, though, we just chalked it up to his age and how most kids thin out around their third birthday.

With Gracin off to bed, my mind could not think about anything other than we needed help fast. Not only did he need help, but I also needed my child to eat again and gain back the weight that he lost. I also needed to talk to someone who could have an idea what was going on. We had now been on multiple specialist waiting lists for a total of four months. I felt there was no end in sight. The next morning I brought out the Pop Tarts that were hidden in the basement and let Gracin eat as much as his tummy could handle. We were completely done with any natural diets, but I did have some natural supplements that I had not tried. Not one of those worked at all in calming his symptoms, so I will not bore you with the details.

As time progressed, we still functioned in survival mode until, after almost five months, the phone rang. I finally received a call back from a pediatric specialist. Although I was elated about the call, I also felt very torn. As much as I wanted that appointment, I did not know what that appointment meant for our lives. It was Valentine’s Day, and I decided a celebration was in order in an attempt to forget about all of our troubles. I made steak, mashed potatoes, green beans, and chocolate chip cookies for dessert. We had so much to celebrate as I announced, hidden in our cookies, that we were soon going to be a family of five. While Gracin smiled endlessly at knowing he would once again be a big brother, to our disbelief, he just stared at the food on his plate. He stated that the meat and green beans were too stringy, and the mashed potatoes were too mushy. We thought it was the diet that caused him to become a picky eater, but I believe the diet only masked him becoming sensitive to the textures in food.

At first we took a no nonsense approach where we basically stated that if you do not want to eat, then don’t. Eventually he had to get hungry, right? Well we were shown how wrong we could be as we watched the weight drop off of him once again. We could no longer allow him to not eat, but we couldn’t really force-feed a three year old either. Gradually, I accepted that there were just some foods that there was not any point in attempting to ask him to eat, such as mashed potatoes, green beans, warm cheese, and oranges. Really any food that had the “strings,” as he called them, but as far as other foods that I knew did not “hurt” him as he stated, he was going to eat even if it meant that he had to sit there for a while.

He was going to eat some sort of a balanced diet because losing weight could not be an option for our growing child. Even though I said that I would never force my children to eat their food, a point is eventually reached where a parent must do what is best for their child’s benefit. We had to make decisions to keep him healthy even if other people disagreed with our tactics. Ultimately, we had to block out all of the negative reactions from other people because we had to live with this child, and we knew him better than anyone else. Sadly, this decision was only one of many hard choices we had to choose to implement for our son’s future gain.

As we prepared for yet another appointment, I tried to prep Gracin before we walked in the doors. I was no longer excited at the possibilities after we crashed and burned on the diet from the last doctor, yet I knew someone had to have the answers. My prepping was pointless as he became overwhelmed the second we stepped foot in the busy office. I was torn in so very many respects as I sat in yet another waiting room with my busy child who took full authority over his audience. I was expecting some sort of a decision on a diagnosis from this pediatric specialist, and my mind pondered what else my child could be diagnosed with other than ADHD.

Again, out in public I cannot even begin to express how awful of a parent I felt I appeared to be. My son either had to be held down or he would be, against my every instruction, climbing up on the laps of strangers or on tables, counters, and the like. Needless to say, by the time we were called, I was just so thankful to be in our own room. I did not care how long we had to wait in that tiny room. Although, Gracin had multiple ideas of how best to push me to my breaking point. I know he never intended to make me feel like I was losing control, but at the time, that is all it felt like: an attack on me.

As I sat in the examination room, with my chair in front of the door, Gracin ran around the room, climbing on the sink, trying to turn off the lights, and he even licked the floor countless times. Holding my youngest in my arms, feeling as though there was truly no point at attempting to stop Gracin, I rested my head on the door, closed my eyes, and felt the tears stream down my cheeks until the doctor knocked on the door. In the split second that followed the knock, Gracin’s attention was averted as he ran to the door to greet the doctor with a one sided conversation about all the details of our waiting experience, his full name, address, phone number, my maiden name….until the doctor finally spoke.

Repositioning my chair again in front of the door, with my hand now also over the light switch, I fought for my turn to talk while Gracin simultaneously attempted with all of his might to turn out the lights. He did all of this while endlessly laughing. I explained the best I could about Gracin to the doctor. It was as if he were a racket ball sent flying throughout a room, except my child never ran out of momentum. I expressed that I felt anguish and embarrassment in not being able to control my son. However, I believe it was written all over my face and did not need to be verbally expressed.

Frankly, by the end of our half hour appointment, the doctor reluctantly expressed to me that my son had one of the worst cases of ADHD that he had ever seen. In an attempt to ease my mind, he assured me that it was not due to lack of discipline on my part. As this pediatrician continued to wipe the sweat from his forehead, he stated that he unfortunately was not able to give us any real answers at that moment. He knew Gracin had ADHD, but he was not willing to diagnose or prescribe medication to a child under five years of age. He stated that he wanted to call in a referral to one of the best psychiatrists in our county who dealt with children between the ages of three and five.

The doctor proceeded to try to convince me to take the appointment as he told me that he also thought there may be something else going on psychologically with our son. Sadly, his words felt basically the same as we had heard in the last appointment. He, personally, could do nothing to help us. In that moment, I needed no persuading. I had accepted that we needed help, and no convincing was in order. I was so incredibly thankful that we were finally going to get to the bottom of Gracin’s behaviors even if it took yet another doctor to do just that. I felt such relief now that two different doctors, outside of our family, saw my son’s activity level and agreed that this child was not the norm. I expressed my appreciation to the doctor as we finally opened the door that I was so diligently holding closed.

The reality was extremely hard to swallow, yet after feeling like I was the problem for so long, I was optimistic for the next appointment. I did not need to accept that this was just how kids were. I knew kids were not meant to be this hard, and I was elated that a professional finally saw it too. I had no real idea what a diagnosis meant, so, at the time, I do not know what I really expected to gain by getting one, but the process itself seemed to ease my mind. Thankfully, the pediatrician we had just met with must had pulled some major strings because we had our next appointment within a month’s time.

As we waited, winter’s final transition into spring warmed our spirits. We felt so optimistic if not for any other reason than being able to go outside again. I was thankful for the weather, but I had no idea what new behaviors were budding inside Gracin. Our son outright refused to step out of our back door because of what seemed like just about every reason that he could come up with. With just the change of the seasons, he had developed new fears of insects, most importantly bees. At the same time, he became convinced that he needed sunglasses all of the time because the sun “hurt” him. These behaviors were only some of the countless things that were now able to send his little body into screaming fits that were like unending tantrums. These lengthy episodes became a new norm as spring went into full bloom. Any small change at all did our little one in, and we knew all the more that we needed guidance.

At first, as these vast episodes escalated, we initially tried to stay with him to calm his rushing mind. However, we quickly realized that was the opposite of what he needed. Against everything in my upbringing, what felt correct in my deepest feelings and what I longed to do, I had to teach my son to calm down on his own. This was very hard for me because I wanted to wrap my arms around my child and let my loving embrace be enough. Gracin would punch, kick, bite, and scream endlessly until he, like a light switch, decided he was done. It was in that instant change that we realized it had to be up to him to stop. It was our loving control over our child that made us realize we had to help him develop the techniques in himself to calm his body during what was later coined a “meltdown.” We felt we had such an angry little boy on our hands, and we had no idea what to do with him other than to walk away.

Of course, leaving him alone was not an easy to come by decision. One of the first things we did was stay with him during his screaming fit while giving him love and support. His anger only escalated with our presence. In addition, not only did the screaming at the top of his lungs eventually get to us after a period of time, but I also felt myself start to feel angry. That anger was directed at myself as well as towards Gracin after being in a room for a significant period of time hearing screaming and dodging kicks, punches, and bites. We were getting nowhere simply sitting in a room with him, and after a few weeks of feeling the anger build up inside, we had to shut the door and leave him to himself. I felt awful leaving him to his own devices, yet his anger was so intense that when he was immersed in his meltdown state, there was no calming him down. There was only experiencing with him.

Since showing our love was clearly not enough in this circumstance, we tried carrying him to a safe room where he could not hurt himself or anyone else around him. We would explain to him sternly and with no expression that we loved him so as not to increase his overwhelmed feeling. We would state that he had to stay in this room until he was ready to calm down and come out. Gracin was then left alone only with his security blanket, which he called “Puppy,” and we would sit outside the door holding it shut. This worked at first, until he started kicking and punching holes in the walls while screaming even more at the top of his lungs. His puppy was clearly not enough to calm him down. It was a pathetic sight to see, from both sides of the door. I found myself sitting outside the door, holding it shut while crying and cradling my infant baby on my lap, while the child on the other side of the door was banging, kicking, and punching the wall, mattress, and himself over and over. I felt like a horrible parent. My eldest child was locked by himself in a room destroying everything that he could reach. One baby and one unborn baby were also ultimately hearing and feeling the stress of him melting down multiple times per a week.

We were reaching almost a daily over-stimulation pattern leading up to these meltdowns when, out of exhaustion and sleep desperation, my husband left a rosary in the room we called his calm-down room. Since he was experiencing, feeling, and expressing the only way his little body knew how to, I was left to figure out how to retrain his brain to experience something other than aggression. To no credit of my own, God led us to the answer. As I began to again prepare myself to sit outside his door, trying my best to not yell back at him, Gracin slowly stopped himself from his next screaming fit within only ten minutes time. Gracin proceeded in his over stimulated state to scream, then say a few calm words that we could not make out, and then continue the pattern. At first we had no idea what he was doing in the middle of screaming, but while watching him on the monitor, we realized he was calming himself down with prayer.

Within twenty minutes, he knocked on the door informing me he was done. When he walked out of the room holding his puppy and a rosary, I stood in disbelief. During the next few days, he would scream and cry for ten or so minutes, and then he would pick up his rosary and begin to recite the prayers. We would then begin to hear him calm down slowly as he caught his breath amidst the prayers. It was, in fact, our little miracle. Although we could not show him love in the ways we felt he needed, we were led by our prayer to teach him a way to calm himself on his own. We were not only experiencing much calmer days, but we were experiencing healing in all of our lives. Such a small repetitious act was calming our son once again, just as it had done for his sleep. I no longer had to hold the door shut during his meltdowns, which never lasted longer than twenty minutes at the point of escalation. It felt so nice to finally feel like we had done something right.

Thankfully, we were not left to our own devices for much longer as the day finally approached for our appointment with the psychiatrist, and I felt a whole mix of emotions. My body shook as I pulled into the parking lot, said a silent prayer, and mustered the courage to begin the next step on our journey. Walking through the sliding double doors, I was presented with a pile of forms to complete. I stood at the reception desk trying my best to focus on which forms I needed to do what with. All the while, Gracin was attempting to climb up my leg, simultaneously pulling off my pants on purpose.

Sitting down to fill out countless papers, I felt helpless to control him from opening every door, standing on the chairs, crawling under the chairs, running around laughing to himself, exploring the waiting room bathroom, pushing the elevator button, or anything else that he deemed necessary. As I sighed helplessly, I made the executive decision to block out his actions. I could have attempted to stop him from moving constantly, but what was really the point, especially in that office. I had no desire to once again appear as the crazy mother who could not control her own child. In my own mind, those receptionists must have already seen everything, so who was I to worry what they thought of us? Whether I appeared as the crazy mother who chased, corrected, and looked frustrated, or the neglectful, aloof, inobservant mother who sat and played with her other child, I did not care. Facts as they were, we were sitting in a psychiatrist’s waiting room, and no matter how you observed us, we appeared as quite an interesting sight to see. Either way, I thought I was going crazy from the over stimulation, but at least, in this moment, we were finally in the one place I felt secure in seeking help.

After the paperwork was completed, I sat in the waiting room contemplating what could be said this time. Based on what the last two doctors had said, I felt we may be getting an ADHD diagnosis again, but I really had no idea. I did not care completely what was going to be said to me. I only prayed that it would a short time until I could sit on the floor and play with my young son. I craved to enjoy his presence instead of being overwhelmed by it, which was ultimately why we were on this journey in the first place.

When we were finally called, Gracin shot like a cannon to the elevator door. He was elated with joy to finally be allowed to press the glorious button that he had been eyeing up from the moment we entered the waiting room. He pressed the button repeatedly until the door gradually opened at a snail’s pace. Since Gracin did not let anything happen slowly, he helped the door open with all of his strength, and then he dashed inside. Standing in the elevator, the last year flashed before my eyes. As the elevator ascended to the next floor, my mind was in another place while my one hand firmly grasped my little man’s arm. It felt like we had been on this journey for so long, and the last six months had been an eternity waiting for answers.

Our new psychiatrist greeted us as we stepped off of the elevator. Gracin ran ahead of us, breaking free of my grip and into the opened door at the end of the hallway. Her presence did not change as she just observed my child and, as a result, left me feeling calm and in a state of wonder at what she was thinking about my son. As she led me into her room, her eyes never left Gracin. I cannot express how, for the first time in my life, I was feeling relief in his behaviors, not because of what he was doing, but that she was seeing him for who he truly was. Even though he was standing on her couch, crawling under her desk, touching and moving every object in her room to his liking, and asking – no telling – her ten million questions, I just sat there watching and waiting for her to finally say something. I took a deep breath as she began to speak to me for the first time. I was overwhelmed immediately by what she had to say when I heard not one but three diagnoses; two of which hurt to my very core.

The first that she explained to me was Asperger’s. The DSM-5, which defines all mental disorders, now categorizes Asperger’s as an Autism Spectrum Disorder, which renamed Asperger’s to High Functioning Autism. This neurological diagnosis was extremely difficult to take. After being fully explained to me, though, I chose to accept it.

The second term she explained to me was a behavioral diagnosis and something that was rarely used in young children such as Gracin; although she felt this diagnosis described Gracin’s meltdowns and impulsive thoughts quite well. That term is Intermittent Explosive Disorder or IED. I was a very confused before it was explained fully, but that also made sense given his behaviors.

Lastly, as we had expected, the ADHD or Attention Deficit Hyperactivity Disorder was stated, and it was explained as being a neurological diagnosis. This was of no surprise since it was not a term being presented to me for the first time, and I had already accepted it in my mind. The next thing I knew, I was being handed three different prescriptions to give to my little three year old child. Two were for his ADHD, and one was a sleep aid. As I stared at the prescriptions in hand, doubting if I wanted to give my son these pills, I graciously thanked the doctor for her time and expertise, and we said our goodbyes until the next appointment in only a week’s time.

Walking down the hallway and into the elevator, I had a whole swarm of emotions begin to overwhelm by body. I felt nauseous, very warm, and my head pounded. Looking down at my firstborn son, I bent over to ask him for the hug I so desperately needed, to which he responded, “No thank you, Mommy!” I felt so distraught as I stood there with my arms outstretched for my child, yet I was left with my heart feeling stomped upon.

My happy, but temperamental, little fireball did not intend to leave me feeling this way.  I concretely knew now that Gracin had something wired differently in his brain. He was not a brat or a child who was undisciplined. He was an atypical child, or a child who could be categorized as special needs. Gracin was not a typically developing child, and as I wrapped my head around the thought that he really never was as every other child appeared to be in my mind, his entire life finally made sense. Of course, I always felt different from every other parent I had talked to. I wasn’t raising a child like all of my acquaintances were; I was raising a special needs child.

Still, though, I wanted love to be enough, and I was hurt that a simple hug was not something he mutually desired! Transferring my deep need for a hug into the infant in my arms, I felt like all the walls were collapsing around us while simultaneously opening up to a whole new realm for our future. As the elevator consequently interrupted the mountain of thoughts piling into my head, with the doors spreading open, Gracin galloped out the door, through the waiting room, the automatic sliding doors, and into the parking lot. Catching him literally seconds from a possibly huge disaster, I again was reminded that this child needed me now more than ever. All of my emotions were difficult to interpret, and, even though we got the diagnoses we desired, we received a whole lot more. My heart was heavy as I held back the tears until we were safely buckled into the car, where I cried.

Sitting in the parking lot with Mozart on for the kids, I called my husband at work. I could barely breathe. After a few minutes, I was able to contain myself enough to tell him what we were dealing with. Even though we were relieved at finally knowing, we felt such sadness for our son’s future. We loved him so deeply, and we wanted so much more for him than daily pills and lifelong therapy.

My internal balance was off as I hung up the phone, started the car, and put it in reverse. I was in a mental spiral of grief until I glanced into the rear view mirror to witness my two sons laughing and smiling at each other. In that moment, I was immediately thankful that Gracin had a sibling. Not only did he have my husband and me behind him, but he was also going to have siblings to care for him through a lifelong bond that would extend far beyond my life’s end. I was again reminded of the beauty in this life. I was not required to have all of this figured out. It was already in God’s hands, and that is where I just had to leave it. I would soon have three wonderfully perfect children, and regardless of what diagnosis all of them potentially held, it was my job to pull myself together and be strong in order to best help my children.

I vowed at that moment to do exactly that, and over the next few weeks, our lives drastically changed again. We were informed that Gracin qualified to receive weekly therapy sessions in our home in addition to his new medications. On top of that, we had lots to talk about and consider for our future family. We had to not only inform our families of Gracin’s neurological and behavioral diagnoses but also that our family was expanding again. On top of that mountain of information, we still had no idea what we should do with the medication that occupied our kitchen cabinet. Yet, as the days passed, we concluded that we knew he had to take them for his and our wellbeing.

We were overwhelmed with the information that was being tossed at us, yet my mind would not let me stop reading the pile of books I had purchased regarding Gracin’s diagnoses. The most informative book that I found on the topic was The Complete Guide to Asperger’s Syndrome by Tony Attwood. Within its pages, my son’s entire life, as well as many aspects of my own life, seemed to be shared in almost every chapter.

I was captivated with the inventor, if you will, of the whole condition. The man’s name was Hans Asperger, and he was quoted in 1944 as saying, “One can spot such children instantly. They are recognizable from small details, for instance, the way they enter the consulting room at their first visit, their behavior in the first few moments and the first words they utter.” I found the whole diagnostic criteria fascinating as I, in fact, saw numerous traits present in one entire side of my family. I was amazed to read in Attwood’s book that, “Recent research has indicated that 46 per cent of the first-degree relatives of a child with Asperger’s syndrome have a similar profile of abilities and behaviors of a child with Asperger’s syndrome, although usually to a degree that is sub-clinical, i.e. more a description of personality than a syndrome or disorder.” I just could not stop reading. I was amazed that Hans Asperger also found a connection with attention problems. As stated in Attwood’s book, “…at least 75 per cent of children with Asperger’s syndrome also have a profile of learning abilities indicative of an additional diagnosis of Attention Deficit Disorder.”

Gracin fit the Autism Spectrum Disorder, which included low functioning as well as high functioning children, perfectly under a large spectrum of a certain neurological criteria. Although I had felt alone in my thoughts and struggles for so long, I now felt as if we finally fit in somewhere. I certainly had a lot to learn, but I saw that the feelings of our extended families were very different. Our families had an especially hard time acknowledging the special needs diagnoses that made us feel accepted.

Even though I found a bit of relief in knowing we could finally get help for our little lightning bolt, a whole new dimension quickly began to unravel. All the plans that a parent creates in their mind during the growth of their unborn child came to a screeching halt as a new reality began to emerge. With the diagnoses, I was led to finally discover why I always felt as if my typical parenting strategies were failing my own child in the physical world. Everything began to make sense: why my infant could not sleep soundly, why the wind made him scream, why he had such a fascination with strange objects, and countless other scenarios.

We were clearly not an anomaly; there were a lot of other families battling in what felt like a climb into the unknown. One of the hardest obstacles I found in raising Gracin was learning how to navigate the perceptions of others. Another obstacle was dealing with the media’s portrayal of a perfect life. I needed to accept that I could not focus on a fairytale life of having sweet children who grow up with all smiles and giggles. It felt like a constant bombardment into our faces of the life we would never have.

I had come to realize I now needed to change my thought process in order to adapt for the child that I had been given. The vision that I always imagined was now, in effect, a farfetched reality, and that reason alone can leave a parent in total heartbreak for the shock it inevitably bestows upon a family. Slowly the shock does wear off as a caregiver nevertheless learns to shake the selfish feelings of what is happening to themselves and transfers that energy onto helping their special needs child. As we constructively transferred our negative energy into a positive one, we decided to figure out a way to explain the information to our families. We wanted a concrete way to describe everything we had learned in the last six months without forgetting anything and providing a future reference. The only way we knew how to do that was in written form.

I started by writing out an informative letter to present to the people within and closest to our family. This letter explained what we had recently discovered about Gracin. We read it to them word by word as most of them sat silently looking at us as if they either wanted to cry, cut us off to argue, or walk away. No one wanted to hear what we had to tell them, but the facts were as they were. We did not want to be doing this, but with Gracin’s best interest in mind, we had to be strong. (See Appendix C: Family Explanation Letter).

This was not as well received from various individuals as I had hoped, but, with time, the diagnoses became easier to grasp, and I felt that our letter was the best way to explain everything. We understood that as a family to such a young child, it can be extremely painful for a person to embrace a diagnosis such as Autism, but it was because of that “label,” if you will, that we were able to provide the best care for him. All children are different, and each child needs their own plan while embracing differences. Autism is, in reality, just a different type of brain wiring and ultimately just a different type of child.

It was our job as parents to make the best decision that we could for our son and for our immediate family’s wellbeing and that reason alone was why we eventually chose the medication route. In my mind, I had tried the diets, the natural medications, allergy testing, and in the end, we saw no improvement. (See Appendix D: 1st Week of Medication).

Thankfully we saw a vast improvement in Gracin’s behavior by only the third day on the medication. Our little boy was able to be a little boy and play. Although it was an extremely difficult decision to put my young son on medication, I can fully state that the medication was a much needed aid to saving our family dynamic. It brought us peace. It still brings tears to my eyes as I reread my own notes because my son’s brain was finally able to be calmed enough to do what most child are blessed at being able to do from early on: play.

Most parents take play for granted, but I can guarantee you one thing: I never do. I thank God every moment that I catch my son playing with a toy, even if is a total mess, because during Gracin’s first three years of life, I feel his play was stolen from him. I believe every parent deserves to watch their child immersed in play; it is truly a wonderful activity. I cannot fully express the joy that I experienced in my children’s eyes as they were playing together enjoying each other’s company for truly the first time enthralled in what children are meant to do best. In the words of Maria Montessori, “Play is the work of the child,” and I was thrilled to witness my oldest child finally “working” like a child.

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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