Special Needs Parents: You Are Not Alone
At times I feel very alone! Yes, I will admit it may seem very difficult to feel alone while being in the company of little children day in and day out, though there is a vast difference between being lonely and being alone.
I may, in fact, have company everywhere— in my bed the few hours that I actually do sleep, in the shower while a box of LEGO blocks is sprawled on the bathroom floor, while using the bathroom with at least one child sitting in the bathtub, or during my short walk down the driveway to get the mail because at least one of my children cannot fathom to let go of me for 10 mere seconds.
Yet, just because I acknowledge the fact that I am truly never physically alone, emotionally in a lot of moments, frankly and honestly, I can admit that I am very alone. To most of the world my family is an anomaly— first, we have five children, yes I said five, and second, two of our boys have autism. This basically means, we, as parents, have a troublesome time being understood, let alone connecting, with most other parents.
My first and my third child, now eight and four years old, although similar in their diagnosis, are entirely different in their personalities. And on the contrary, they are vastly different than their other siblings. So while most of the world is privileged to raise healthy stereotypical children, and I can attest that even though I would never trade my children’s presence in my life, I would like to feel less alone and alienated from the world. There is admittedly nothing I would not do for some calm in our lives—to have my child sit on my lap and listen to just to one full book, to give me one hug without being asked or to make it through just ONE day without a sensory overloaded inspired throwing, growling, screaming, and/or spinning episode.
Our home is one where toys overstimulate, hugs bring meltdowns, a simple touch is denied unless the correct amount of pressure is evenly applied, books are ripped and thrown instead of reading, and finding wet spots on the floor of an unknown source is a typical daily occurrence. A life that brings immense amounts of happiness, but also overwhelms and leads one to wonder if anyone around me understands what is happening in our special needs household.
I am living in a life where I must choose between nights of sleeplessness or to provide a medication to my each of my children on the spectrum so they may peacefully rest, recharge, and drift into a much-needed dreamland— a land I wish they could feel all of the time without management. A life where a child waking in the middle of the night means pure adult anxiety because both my husband and I know that we could be in for a whole slew of situations—all of which need immediate attention for our child’s well-being. A life where toys must be stored in a locked room and be played with only one at a time to avoid an overstimulated meltdown. A life where I question why in the world I had not only one child with this autism, but now two.
My body and my mind struggle simultaneously during each moment as I constantly weigh the correct actions to take with my two “special” children. Although labeled with high-functioning autism, my two boys appear completely typical to the world around them, though underneath the surface a complex concern remains. Living in a world where individuals do not seem to care to see the special needs child acting in a way their body feels best is a painful and lonely realm. Raising a child that is perceived as a spoiled brat or an undisciplined child leaves a special needs parent hurt and frustrated.
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Dwelling in a community that believes that we could easily fix the meltdowns in our house by a different type of discipline, less discipline, or more love is earth-shattering. Though, regardless of what family members believe will best help my child ACT BETTER, how our neighbors perceive our loud home, or how spectators fail to see our attempt at doing our best to just function through another day, our children matter. These outsiders who do not live day in and day out in our house have no idea the amount of devotion that we, as parents, endlessly give towards our ‘special’ children, regardless of why we, in fact, believe they are special to us.
Though because life continues and my sons are who they are, in their condition, that will not be changed simply by parenting differently, we are where we are—but we are not alone and to know that makes all of the glares in public, unwanted suggestions by family members, and exhaustion— a little less painful. At the end of the day, I believe I was given these children because I am willing to sacrifice everything to parent them the best way I know how.
I refuse not to let their diagnosis destroy our families happiness, I will not let my voice be smothered because I have differing opinions from most of the world, and I will pick my weakened and worn body up to state that each one of us will be okay throughout the process of raising our children with autism. We may not look as put together as other mothers do as we go about our daily routine—such as even finding time to change from pajamas until the afternoon is almost over or to use the bathroom until you have no choice, or find the time to brush your hair daily or even shower regularly.
Though these tasks that are missed because we are focusing all of our time and energy on our children prove that you are giving your all to your child and you are AMAZING. So next time you feel alone in what you do for your child just remember even when the world looks down upon us, even when those closest to us look down upon us, we are in this together.
You are not alone, I am not alone, and our children are not alone. Each one of us is united by the autism diagnosis and we will always be there for our integrated and faultless members who were given a special child to love. Being a special need parent unites us and that bond instantly connects us to a world of parents who although do not know us, truly get us and most of our feelings almost instantly. So the next moment that you believe you are alone and you cannot take one more second of the endless anxiety-ridden screams of a sensory overloaded child, just remember I am going through the exact same thing and I am thinking of you.
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 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 of age. She believes her son is the greatest gift that she has ever received and wishes to help all individuals come to understand that the special needs individuals are an important part of our society as they teach us to be selfless. She lives with her husband and their five children, two of which are on the autism spectrum, in central Pennsylvania.
This article was featured in Issue 60 – Sensory Tools For The Future