One of the best gifts that I have ever received was a day that the majority of parents in our world would call a typical day. A day of calm play, happy though exuberant childhood voices, and a soft pitter patter of cascading footsteps throughout the home, although for our household, this quiet day was more of a quizzical eerie silence that left us wondering what was going on in our child’s four-year-old mind.
This day lasted but a few short hours, yet will linger in my heart forever in the hope of a better tomorrow, and to be determined in our lives: a day when my son’s sensitivities may be calmed and we may experience peace. This day is one that brings tears to my eyes, a difficult scenario to truly depict into expressed words and although it has only occurred yesterday—feels like it has happened years ago when compared to today’s experiences.
Now, before I explain what happened in fact before our last sleep, as my son calls them, let me explain what has happened today. Today I was awoken to my son running out of his room slamming his body into the walls much like a bouncing ball unleashed in a long hallway. As he missed the turns because of the force that he was running, he only exuded from his mouth a deep and low pitched growl, as he made his way into my room to awaken me and his baby sister—almost an hour before the sun opened its eyes. As I sleepily guided his body back into his room bypassing my other sleeping children, I tucked him back into his bed gently explaining that he needed to stay there until his clock turned yellow. Though as I walked out of his room, I saw his eyes were not going to again shut, and all I heard was louder growling as I sullenly acknowledged he would never return to sleep.
Drifting back to sleep rather quickly, I realized all the more this day was going to be a rough one from what I heard coming from his room. Praying that the peaceful morning silence would continue, I kept my eyes closed for as long as possible until our baby boy now abruptly awakened every sleeping body in the house. He took his body and slammed it into the wall repeatedly as he left his room once again seeking sensory stimulation into order to calm himself, though the two-hour sleep deficit was enough to push his sensory regulation over the edge for the day.
Lying the baby down for her protection in her own crib to follow after my son, with tears in my eyes, I could only watch and softly use calm words, as he screamed at each and every food choice I offered until he finally agreed to one that he approved of by not shouting. While I was pouring the cereal into the bowls, behind me his eyes caught notice of some treats placed on the top of the fridge, and with one impulsive thought, he began to scale the fridge. With my eyes off of him for one tiny second, he used his strength to get those tasty cookies, at what I thought was an unreachable place, though nothing was truly out of his reach, I had discovered.
Yesterday, for some unearthly unexplained reason, that same child walked calmly though our halls, there was no growling heard from his lungs, he never once slammed his body into the walls, he sat in my lap for countless stories, and he told me he loved me without being asked. No screams were heard from his sweet little lips, and his big eyes locked onto mine when I spoke. As much as I am convinced this day was not real and it was a dream, my husband can attest that this day did in fact happen, and for some unexplained reasons, it showed a very calm and happy little child within my son’s high-functioning autistic body.
This day I speak of is why I will never stop perusing an end to the control his sensitivities have on his tiny persona. I will never accept, possibly against my own best judgment, that this is what my life has come to. I will not accept that this is the way he was intended to be. I do not believe that he would choose to act in the manner that he does, without these intense sensitivities and altered developmental state. I believe it is OK to want more for my son than accepting this diagnosis as something that will impact his life forever. I want to believe there is more to this life than this daily regimen of stress, heartache, and disappointment. This is why I truly believe I will never stop looking for a remedy or until I have found something that relives my son’s sensitivities and/or allows him to be the child he was originally intended to be, diagnosis free. Every night I will pray that one day I will be able to watch my son happily play with toys without becoming so overwhelmed that he throws them, screams and deeply growls, and then runs his body into the wall to ease his feelings of frustration.
I acknowledge that there are many individuals and articles in circulation today by people who state they would never want their child to be “cured” of autism spectrum disorder (ASD), though I call their bluff. I do not believe any parent can truly state that they pictured his/her baby, while growing in the mother’s womb, with a diagnosis. No individual I ever met wished for a child with special needs when dreaming of his/her future family, and although the person may have known and accepted that it may become part of a future reality, he/she never wished for it to become true. So as I sit reading through articles of parents stating that they would never change the autism in their kids because it is part of who they are, I feel pain for them.
Though, upon a deeper understanding of what autism is and what it does to a child’s developing brain, any loving individual would want to take that diagnosis away from them. It does not mean that a person may love them any less; it actually means you love them more. What is real, what is love, what is selfless, is to believe that one day I will help him become and enjoy him as the person he was intended to be—without this special need. Wishing—that is, not wishing—that he is not who he has become because below the surface of the diagnosis, he is still him, without his autism, and that is the little boy whom I know and love. The aggression, the endless screams, the impulsive outbursts are not part of my son’s true core, and those things I would gladly wish to let go of, for his own best welfare. To love your child does not mean that you cannot want better for him or her, want an easier life, or want your child to be a better version of himself/herself. At the core of love is to want better for a person, and that involves a life that is pain free, a life of cuddles, smiles, deep belly laughter, and pure peaceful dreams, a life I hope to someday watch all of my children experience because there is nothing wrong with wanting more for my special needs child than the life that is currently in our focus.
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. Her award-winning book details her oldest son’s life from in utero through his diagnosis at three years of age and concludes with the beginnings of his first year of school at five years. She believes her son is the greatest gift that she has ever received and wishes to help all individuals come to understand that individuals with special needs are an important part of our society as they teach us to become selfless. She lives with her husband and their five children, two of whom are on the autism spectrum, in Central Pennsylvania.
This article was featured in Issue 68 – ASD Strategies in Action