"Loving the Soul" Chapter 16: Not for the Weak of Heart

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

Not for the Weak of Heart

St Catherine of Siena, one of only three women in the Roman Catholic Church given the formal title of Doctor of the Church, while in a dialogue with God learned that, “The willing desire to suffer every pain and hardship even to the point of death for the salvation of souls is very pleasing to me. The more you bear, the more you show your love for me.” I was astounded at what I read and how I interpreted these very “heavy” conversations that she was gifted to have. I hoped my suffering and my day to day in and out trials with my special needs child could perfect not only my soul but also that my good works could be offered up for other souls as well. I felt as if I was given a gift, an intense one but nevertheless a gift, that my life could help others through my own trials and sufferings in raising this unique child. I was no longer saddened by the outlook of my life; I was invigorated. As hard a message as it was to accept and understand, within the pages I continued to read, “The soul, therefore who chooses to love me must also choose to suffer for me anything at all that I give her. Patience is not proved except in suffering, and patience is one with charity, as has been said. Endure courageously, then.” The message was clear in my mind. In St. Catherine of Siena’s dialogue with Christ in her ecstasy, which provided her with a one-on-one conversation with God, himself, I had heard exactly what I needed in regards to patience, courage, and charity. Therefore, I felt I was given a way into finding how to suffer in this world in order to gain in the virtues that I had always lacked and needed for my own spiritual growth. All of the prayers of my life were ultimately being answered after all, just not in the way I desired them to be answered but in God’s will for my life.Child rearing, in my opinion, is not for the weak of heart. Raising a child, truly sacrificing for that child, I believe, changes a parent more than they ever expected. This reason, in itself, is why I feel that every parent needs to read real life accounts of how others worked through all of the stages of development and also how ultimate sacrifice on a child’s behalf is the greatest gift. I honestly cannot explain where in my life I found the time to read during the months that followed the diagnosis of my Gracin, but I was determined to soak up as much knowledge on his diagnoses, as well as what it meant to love genuinely, that I could find. Within the same month, I stumbled across a blog on the internet entitled, “Why I Should Have Never Had Eight Children.” This title is a little deceiving, that the author should really not have had her children. It is really about what those children were meant by coming into existence: “The souls in your life are gifts, each of whom is meant to sanctify you in a particular way. My little sanctifiers are the artisans who change and mold me in all the ways God knows I need, and they are their father's and their siblings' artisans, too.” Therefore, how selfish was I being in believing that God was not hearing my prayers? Though, as I sat in my bedroom during night’s quietest of hours, I was led to understand from multiple sources that as the parents of a special needs child, my husband and I were being given a unique opportunity to grow spiritually. This job is not for the weak, but regardless of how strong I ever believed myself to be, it was now time for me to develop my ultimate capacity for growth in love. When you really think about it, it is amazing how many ways there are of dealing with the same childhood issues in the various ways of parenting. The most important way that I learned for parenting was giving my one hundred percent devotion to the tiny little human who grew in my womb before I ever even knew he was there. Parents must constantly tweak their parenting style to choose the methods that work best for their own child and family each given day. If those styles are based on a selfless devotion to the child, a parent will never fail. In a gene study conducted in November of 2014 entitled, “A Fresh Take on Autism’s Diversity,” geneticist David Ledbetter, chief scientific officer at Geisinger Health System in Danville, Pennsylvania states that, “What we’ve learned in the last five years about the underlying genetics is that there are hundreds, if not a thousand or more, different genetic subtypes of autism.” It seems daunting based on the above mentioned information to then state that there is one best way to guide a child diagnosed with a broad term such as autism. My son’s autism could be just one of thousands of different types that are caused by some sort of genetic mutation in the coding that intertwined at his conception. In the same article, it also mentions that, “microarray technology revealed that people with autism tend to carry many copy number variations, deletions or duplications of large stretches of DNA that encompass multiple genes. Researchers soon saw that people who harbor the same copy number variants often share other characteristics and symptoms as well.” It is then a relieving thought to hear, once again, that my son is not the way he is because I did something wrong during my pregnancy or within the first few years of his upbringing. It is conclusively just one of the things that happened in the coding of his genetic makeup that caused my son’s brain to be developed differently. Again, this was never something I did to my son, as I and many others have thought, that we, as parents of a child with autism, did something to have our children become this way. Many times I struggled with how to discipline my child because I did not know what was at the root of his behavior pattern. The question constantly was in my mind if each behavior was typical or if it was something that he could not control because of how his brain was specifically made. Some issues I needed to take more care in approaching compared to others, and that confused some family members. Sleep was one of those examples. It became a major disagreement for the vast majority of our family members who did not understand why we did things the way we chose to do them. I was constantly told on all fronts, that children will sleep when they are tired. It is a good thing that I just could not accept that. I knew my own unique child, and the way in which his brain worked would never had allowed him to sleep deeply if I had permitted him to make his own bedtime decisions. Gracin craved structure and routine, and it was my job to provide him with the correct atmosphere even if I had to disagree with everyone around me. I felt the element of a schedule brought us all peace and was of the utmost importance in our lives. As the months unfolded, we were met head on with our son’s intermittent explosive behavior, and I constantly thanked God that we established Gracin on a routine when we did at just over a year of age. We officially renamed his tantrums into meltdowns, and they were the most challenging and frustrating part of his progression. Finally, by the end of Gracin’s 3rd year, we had our schedule mastered, and Gracin always knew what would happen next. He felt security in his life even though we were faced with the impossible challenge of explaining to a three year old that sometimes life gives us things we cannot prepare for. In those moments, our house would come to a screeching halt as life no longer appeared calm. We received a lot of stares and criticism from many different sources during and after a meltdown. I, myself, was becoming over stimulated from the amount of energy and time I was providing into controlling my son’s environment. Consequently, a few doctors suggested I start an anxiety medication. I felt the risks were too high for my growing family, so I kindly declined, but I will never fault anyone who believes they are dealing with too much. At times, life seemed all too much to bear. We had the minutes scheduled, and we followed the clock to almost a fault, and, yes, it was incredibly hard, but oh so needed. I felt so much tension that at times I felt I could not enjoy my children or the world around me. That is one of my main regrets of Gracin’s year of being three. With the constant reminder of what life is ultimately meant to be - a continual perfecting of our souls for our ultimate destination - I was comforted. I used myself as a tool to do everything in my power to establish an environment that was calming for Gracin. I took total control over our schedule, limited our visitors, and made sure that he felt loved in the ways that his body needed. In essence, I let him be in total control so that, in time, we could help him learn to accept changes in his routine without a meltdown. Escalation and control seemed as if they were Gracin’s favorite things to do; although, it was the only thing I believed he was actually able of communicating in the moments of overstimulation. With time, struggle, prayer, repetitiously identical days, and perseverance the child who emerged from his shell is an amazing sight to see. Our love had to be changed in order for our Gracin to excel, but because no one’s capacity for love is the same, it was not an unreasonable expectation. These special needs children are special not because their diagnosis deems them as inferior and their brains or their bodies are developed differently. They are special because they are God’s way of perfecting our world’s love within their lives. I believe they are a beautiful sight in the grand scheme of things, not only because they truly teach us what it means to love, but also because they will be some of the first souls to welcome us at the heavenly gates. I genuinely believe that the special needs individuals of this world are God’s little caterpillars who, although seem to be stuck in a cocoon in their lives here on earth, will emerge in the next life as the most beautiful souls upon whom we have ever laid eyes.