featured image
"Loving the Soul Beneath the Autism" excerpt by Janele Hoerner (CatholicMom.com) Some may say that I asked for this life, and in honest reality I did. In searching for my own happiness within the big wide world and by only thinking of myself at first, I became increasingly more lost with each sequential step forward. Therefore, by the own naivety of a young girl’s heart, I was blindly led to believe so strongly in the wavering words of someone who told me that they loved me and wanted to marry me. I trusted fully that those words were the truth. Unreservedly, I gave that person everything, and even though I now know that by my immature thought process I set myself up for much heartache, at the time, I thought my decisions could lead to none other than a lifelong marriage filled with harmony. However, only a few months later, sitting alone in my grandparents’ back yard, on which was supposed to be my wedding day, I slowly swayed back and forth on a swing set weeping in realizing the weight of my decision that not only affected myself but also now a child. Free of all the lies and the misguidance, I slowly realized that I was now able to choose a completely new path for my life. A path chosen by transforming my devastation and tears into an unwavering strength built upon trusting in God, my supportive family, and the growing child within me. I will admit that I may have not followed the easiest course for my life by any means, yet through my budding faith, I pushed through with my dignity intact. I had previously put my trust in another, but a being who I believed to be in the highest of the heavens freed the chains of my existence as I began to forge my straight path into the world. This path that was extremely lonely at times, but ultimately led me to the man that I believe God had always intended me to find, at the exact time I needed him most. That man was superior to every single boy I had ever met. He was true to himself, stood for everything that I was never strong enough to vocally admit, and balanced me in all of the areas that I felt I faltered. Needless to say, he was the perfect man for me. He was the other half that would complete my life, and although it took some time for me to be able to put my full trust in his unwavering commitment, his love never faltered. Together, we started a life based on love, one that I knew was at the basis of my being. A life whole heartily open to any new life that God chose to place within my womb to grow. As the years passed and we welcomed four children within a six year period of time, we talked continually about what we believed to be true and right within our world. Even though the match felt made in heaven, worldly obligations brought on many struggles as our son’s special needs presented themselves. A child like we had been given was not easy to take into our arms, give our love to, and serve, yet that is exactly what I felt God wished of us to do. Slowly and together we mustered the courage to rise to the challenge, and I now believe that we can most definitely be better in our responses to our subsequent struggles. We are finally on the correct path to happiness for our own family. Even though I may have been on that swing many years ago distraught at what had happened to my life, I believe that by pleading to God on that day, he lead me to the exact life he had set up for me from the moment the world began. However, as the comments about our lifestyle began to be flooded into the interior walls of my mind, I was left swimming in a sea of emotions. As a result, I revisited that same swing set in my mind where I did nothing other than give all of whatever was happening at that current moment to God. That effort never ceased to bring comfort to my overwhelmed mind. As it states in 2 Corinthians 12:9-10, “9 'My grace is sufficient for you, for power is made perfect in weakness.' I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. 10 Therefore, I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.” By those statements alone, I became strong in love as a result of my own worldly weakness, and as Gracin’s age progressed, my skin continued to get thicker. Resolving that by my weakness, God would never cease to be my strength, yet in accepting this challenge, I also had to learn to change myself in countless ways in order to help the individuals in this world view my special needs son as a gift and not a burden. Statements bombarded us from both inside and outside of our families but the opinions within the family were inevitably the hardest to take in. Since my family believed and taught me that love, gentle guidance, and facial expressions were enough to rear a child, I quickly became the problem. As the situations escalated and a wedge was being driven between us all, the height of all the scenarios happened when my son was around three and a half. Someone very close and beloved to me decided that they had seen enough of my ‘disconnected’ actions to my son. Standing in my living room scolding me with their finger in my face, they expressed to me that I was the one who needed help. Needless to say, I could not find the words to argue many times as I was so caught up in my own emotionally tied feelings. As I stood there in disbelief, less than an hour after returning from church on a Sunday, I asked, through my tears, that everyone please just leave my house. It was in that moment that I believe I once again hit a sort of bottom and my skin thickened. As I slowly rose above the person, who typically so easily fell to pieces in the moment of confrontation, I learned that I needed to acquire the words to fight for and clearly explain to others why we were parenting Gracin in the way in which we were. The opinions had always rolled in and emotions ran high; it seemed too hard to repeatedly explain the reasons behind our actions. Our families tried their best to respect us, yet as those storms clouds hovered continually over our heads, fingers began to be pointed. I realized that our family members were struggling with their own emotions and needed someone to blame, other than a young child’s neurological wiring. Sadly, I became the easiest target as an emotional response outlet. It was my fault that he was this way. I was too hard on my son. All he needed was a hug. The unavoidable responses continually radiated that he had nothing wrong with him. Their words hurt me to my core because it broke my own heart that I could not show my child love in the way in which I desired. Yet, because of the respect I held for my own child, the person God placed in my life to raise, I would not cause him such pain because of my own selfish desires. I can fully understand that it came as a shock to most spectators that I had to be what seemed like physically detached and at the same time be more aware of my son’s actions then any of my younger children combined. I felt that there was no other way around it. Gracin needed and demanded a very large portion of my attention. It was a 24/7 job that never ended, not even in the middle of the night, but one that I fully accepted with open arms. It was exhausting, and whenever we had planned or unexpected visitors, the tensions increased because as his parents we had to be on absolute high alert. At those times he forgot all of his rules and manners in the excitement of the moment. As a result, he would get corrected increasingly more often as he had to be constantly reminded of what he was and was not to do at any moment. Viewing it all from another’s perspective, I am sure that it does seem as if I overcorrected and had to ‘guide’, or in their words ‘scold’, him far too much, but our families were still only thinking of our actions in being compared to rearing a typical child. The above scenario with one of my family member’s disapproval and disgust in me as a parent did not end with that one occurrence and certainly did not end with just our family members. Everyone had their questions, comments, and advice, which were almost always the same. They just could not understand why things could not be calm, happy, and all smiles. Kids will be kids no matter what you do; no kids really listen to their parents; he will listen once he has a teacher and you are not around were some of the typical responses that bombarded our constant awareness. Though the comments just went on: if he was my child then he would listen; you just need to beat him into submission; he’s just busy; time will mellow him out; he’s one of those difficult children; he’s just active. It was quite a spectrum of comments. My favorite was: you would not want a child that just sat there and was a blob would you? Well now that you mention it, yes, but do not get me wrong, I would not want to trade my child for anything, but what I did want was to experience calm in my life. Children who know how to sit and play are not blobs; they are wonderful additions to a family, for they instill peace in an uncertain world. So, yes, that’s all I wanted, a calm little child who played with toys and let me sit down next to them and play also. That was always the life I had envisioned having, being able to laugh, smile, cuddle, and have fun together. Unfortunately, that is not the type of child who came into our lives, and it was not an easy reality to accept but one that nevertheless needed accepting. Gracin needed parents who understood who he truly was and who could courageously stand up to help him and not ignore his problems. So, the opinions of others continued, and aside from locking us all in the house for the rest of our lives, we eventually had to find the words to help other people also learn how to interact with our special needs child. It may not be a road easily accepted, but by showing others how to truly love, hearts begin to change over the course of a lifetime. It is tragic that in living in this world today, there are so many special needs children and adults. We need to view it as an opportunity to teach ourselves and our typical children how to have sympathy in action and feeling in order to learn how to deal with these atypical children throughout their lives. A typical child in today’s world is not going to be able to go through their life without meeting a special needs individual, and everyone should, therefore, know how to act in their presence while respecting them as the God-given soul that they are. I have had so many looks, glares, and judgments directed toward my family in public and in my home that one should never have to undergo. Even though I learned to bite my tongue and shake my head at the ignorance of most adults that crossed our paths, in hope that by my loving response they would understand how wrong they were in their accusations, the comments were never any easier to hear. In reality, I was never proud of how strict and stern I had to be in my tone of voice towards my son, the way I had to let him cry himself to sleep when he was a toddler, or how I could not wrap my arms around him for most of his third year of life. However, I did what was best for him regardless of how easy it made my life or how it made me appear to others. I could not be the parent who everyone believed I should be. I was parenting my son in the exact way I was being called to by following his own needs. Raising a child - special needs or not - is difficult regardless of the exact diagnosis or lack thereof, but because each situation is so uniquely different, we should all support each other in our dissimilar struggles. I would never compare my son’s needs with another’s. In the moment, others may think it would be easier if my child was blind, deaf, had another diagnosis that was less well known, or was diagnosis free. In reality, each person truly has no idea what that specific family is going through by raising that child. Diagnoses are not stamped on children’s foreheads, and regardless of if that supposed child had a special need or not, judgments should never be made on a child or their parents for an action you may not fully understand. Recently, there have been many opinions in the paper and the internet that speak about what causes autism. Even stating that because as little as 1% of the mothers tested in doing a certain activity, over a period of time, somehow proves that something they did caused the disorder, it can make a person’s head spin. I have read that soda, antidepressants, food additives, pesticides, vaccines, parental age, prescribed pharmaceuticals for the mother during pregnancy, alcohol, and the list goes on…may inconclusively cause autism. So, for everyone out there speculating, what did that mother do to cause her son these problems, I never smoked, drank, took antidepressants, was at an adverse parental age, did drugs, or ate foods that were ill advised, and my son still has autism. I am convinced that my child inherited a genetic trait passed on in my own DNA, and until there is conclusive proof that I caused my son’s diagnosis, I will raise my head high to believe that I did and am currently doing everything in my power to help my child each and every day. Even though opinions will never cease to go away, at least it is comforting in knowing that there are numerous other individuals out there parenting through basically all of which you are. It is up to each person to find answers through doctor’s offices, support groups, books, and social media. Most of what people say is only said because that person cannot fathom any way of thinking other than his or her own. If that is the case, then they are not even worth your time. Over time things do improve, and a parent starts to get a very tough skin to the comments. Even though it took me almost until my son was five to really get the feeling as if I could fight hard to get him what he truly needed, I did get to that point. This is why I believe that it is so important to slowly develop that fight and will for your child by learning to confront family members’ adverse comments early on. That way, no one will ever let the infant you once held in your arms, slip through the cracks once school begins. Loving the Soul Beneath the Autism is available at Amazon.com.

Read more chapters from Loving the Soul Beneath the Autism.

Copyright 2020 Janele Hoerner