I am reluctant to admit that my husband and I have honestly talked a great deal about how we feel our son could have fared differently if he had been raised from the first moments of his life in a home with two committed parents by his side. Many questions were raised from pondering the previous thought in our late night talks about how best to help our child. If I had been free from the chaos of unpredictability in my pregnancy, would I have had all the medical problems during his gestation? As a result, would Gracin have been different, calmer, and more at peace as an infant? Would those differences have caused our child to be varied in temperament, his diagnoses, and his personality?
These questions could go on and on, and because they can and will never be fully answered on this earth, is there really even a point to their inquiries? Well, no, per se, but honestly they can become an endless spiral of emotions. To different degrees, we, as parents of a special needs individual, blame ourselves at times. We feel responsible for our child’s diagnosis, and regardless if there is any point in these thoughts, they creep into our reality on a continual basis. It is a very difficult actuality of thoughts, but an article entitled “Parents Don’t Cause Autism in Their Kids, and We Need to Stop Blaming Them For It” has eased my mind many times. This article appeared in The Washington Post on November 28, 2014, and it was written by Kristelle Hudry. What she states shows that what we were feeling was not an anomaly for our family at all:
Since the condition was first recognized in the 1940s, parents have been and felt blamed for their children’s autism. Today, most people no longer believe this, but a lingering doubt continues to niggle many parents… (In the past) Parents were blamed for their children’s autism because psychoanalysts thought cold, detached parenting must be the cause of their extreme withdrawal from the social world. Some parents were seen to interact with their children in ways that were interpreted as demanding and emotionally distant, rather than supportive and warm.
There are countless articles on the internet, stories I have been told, and forceful suggestions from individuals who have proposed that maybe it was something that we were doing as parents to cause our child to act in the ways that he was. Time and time again, even though I personally knew that my child’s diagnosis had nothing to do with how I was acting in raising my child, the reality, and even the unwanted guilt, remained a certainty in our lives. As time passed and I continually looked at my other children, my mind always went to question and wonder if Gracin would have fared better being raised by someone else. Even though those interactions were almost impossible not to take to heart, slowly I learned to let the comments not affect my emotions.
Facts as they remain, Gracin has truly transformed my life in a million different and vital ways because of his outright existence. I have grown not only as a parent but also as a whole person because of his impact on my life. Just a little bit of time before his conception, as I have somewhat described, I was a selfish, unrealistic, irresponsible, disrespectful, and impatient – let me say it – child. Still thankfully, with dedication, coming in contact with a few special individuals, countless nights of research, and specific tools, I was led to make all of the changes necessary for the life I now possess. A life I feel I am privileged to have. A life I feel that I am fully capable of sustaining by caring for a child with special needs.
Although our child was not an easy child in any manner, I believe that I was this child’s best bet at growing to become a loving and wonderful human being in his own right. How could I be so selfish to only keep thinking of myself – my wake up call, my hardship, my…my…my! As is stated in The Letters of Catherine of Siena, Volume II
In God’s goodness we discover and experience charity by seeing that we have shared in this charity through all the gifts and graces we have received and are still receiving. And in knowing ourselves and sin (which we discover through that perverse law within us that has rebelled and is still rebelling against our Creator), we conceive a disgust and hatred for our selfishness. Through that hatred we discover a patience that makes us strong enough to endure pain, scorn, abuse, hunger and thirst, cold and heat, and the devil’s torments and temptations; and we despise and run away from the world and all of its pleasure.
My thought process broadened as I began to open my eyes to see how I could help my son evolve and grow, instead of mistakenly and selfishly only attempting to make my life easier. I now trust that, if the saying is true, God only gives us what we can handle. If that is so, I am led to believe that God must feel I am pretty special. Raising a typical child is an endeavor in itself, but it takes a whole new level of parental commitment to care for a special needs child day in and day out. This is why I believe that God only entrusts these special children to exceptional parents.
I believe it was based on that point alone that I began to understand that in order to be that extra special parent that I believed I was being called to be, I also needed to find time to give myself a break from the constant goings of this little boy without leaving him in the hands of another person. Since I hardly ever left his presence, I truthfully needed this break more than I could describe. However, I never admitted this to anyone. I desired to be the super mom that I envisioned myself to be. I knew that I had it in me, but in reality, I knew that I had to be very careful that I did not push myself enough to break.
After much consideration and reconsideration, I came to the conclusion that I could not be the parent I wanted to be without time to myself. A half an hour a day is under four hours a week, which in proportion is significantly less of a break time than most individuals receive at a typical full time job or in combination with the drive to and from work. I feel I deserve at least that small amount of time to not be a wife, mother, or even a friend. To be just me, a human person with my own set of needs who still needed to feel as if I mattered.
I initially saved this break until the end of the afternoon nap. However, after multiple occurrences of missing out on this time and hearing Gracin running full speed down the steps, I realized that this set time had to come before all of the dishes, wash, cleaning, and dinner prep was done. So I willingly put myself first, and although I may feel guilty doing this, I still give myself one half hour a day. This refresh time is my time to do whatever I want and nothing about what needs to be done. This is a time to listen to music, write down thoughts, scream into a pillow, cry, or pray. I have done a lot of soul searching in those tiny tidbits of time, and, as a result, I am able to better help myself be in the correct mind frame to be calm and collected to keep giving my all to my child.
Of course, since life always changes, there were many times that I lost that time each day because something absolutely needed to be done that minute, or Gracin was having an off day and was screaming at the top of his lungs because we had to find a tiny fly, which could have been invisible, but nevertheless needed to be dealt with immediately. I never sacrificed my child/ren’s safety for this private time, but as long as I was not extremely needed or being neglectful, I made that time a priority for my own rejuvenation.
When I lost that personal time, I discovered that instead of getting mad and feeling as if my own personhood no longer mattered, I could offer up all of my actions in caring for my child into a prayer. A prayer for my own soul’s benefit or for someone whom I never had the pleasure of meeting yet had no one else to remember him or her. There were countless moments where I felt my emotions begin to get the best of me. In recognizing that I was reaching my own capacity, this was the best way that I knew to bring myself back in check.
I will admit I could have lost my mind and hurt my child in ways I would never wish to express, but this small gesture of prayer and offering or self-talk to myself was enough to clear my own anxiety. I believe that although it was never formally diagnosed, I began to have moments of situational anxiety and depression brought on by countless stressful situations. Even though I could have turned to medication for myself, I was able to bring myself out of a spiraling vortex through this constant silent prayer.
Thankfully I never resorted to physically losing myself within my own anger to abuse my child. Frankly, it was not because I was a perfectly controlled person. I am far from it, but I found self-calming resources to outlet my energy, which became the root of my prayer life.
Actually, before my words were even targeted as a prayer for help or offering, they were just a jumble of words formed out of desperation in my own head to understand how my child could possibly be arguing with me once again.
I craved, at the depth of my soul, someone to bounce ideas off of throughout the day. Since talking on the phone, going out in public, or having someone over upset my son’s entire world, all that was left was myself and these little children. As much as I loved and adored my tiny people, I still craved adult conversations. I badly wanted to hear the validation that I was doing something, anything right. Even though I never felt truly alone in my heart, day in and day out in my mind, I was spinning. It was in discovering that God could also be my friend as well as my creator that everything in my world brightened up.
Within those moments, I learned to not even desire social interaction with other adults because I had found a friend who would never leave me, no matter what I cried to Him about. Those little moments, broken up throughout the day whenever I could find a few seconds, gave me the break and the restoration that my body, mind, and soul desired. I could say a simple prayer in my mind and heart such as “Please God help me not to hit my child out of anger while I explain to him for the hundredth time in the last five minutes why he cannot do… ” It was because of that self-talk that I was able to stay sane.
Over time, I came to understand that this child was given to me because someone up above in the clouds – as Gracin would say at that point in his life – knows that I can handle this life. I can give this child the best care that he needs. I was entrusted and obligated to raise him to be the best little man that he could be, and that was exactly what I was going to do. How selfish could I ever have been to be thinking about the hardship that this child projected on my life by his existence? I was called to transform my desires into serving his needs in order to help him to learn, grow, and thrive in this world.
I am the first one to admit that I am NOT a saint. I do not even know if I can ever have what it takes to rise to be such an admirable being. I think of myself far too much for my liking. I screw up each and every day, multiple times per day, and I feel I rarely act in the manner that I wish to. Although, each day that I am blessed to open my eyes, I attempt to care for the child/ren with whom I have been entrusted. I ask for forgiveness from God and the little ones in my life daily when I snap and if I feel I cannot take the burdens on my shoulders. I constantly plead to God in my prayers so that I may be guided to act in the manner that I wish to model for my children.
Even though this life that I believe I have been gifted with is not an easy lifestyle, by acknowledging that, I can admit that most times basic parental needs have to be altered and sometimes outright neglected in order to optimally help an atypical child feel secure in their own needs. I can plainly admit that this is such a difficult and tricky balance that one must ultimately figure out for themselves. In knowing that fact, there are other individuals out there in the world going through a very similar situation. That fact alone should help us, as parents, never feel completely alone. Unfortunately, and at the same time thankfully, there is no manual or guide that will fit each unique child on the autism spectrum. I do believe that by elevating a person’s thoughts constantly to a higher cause, I, and other parents alike, can rise above our own needs to complete what we are called to do in raising these unique children.
You see, our family was no exception from the reality of autism. The only real constant prediction that we could expect from each of our days was sporadic movement and unpredictability. However, by instilling all of the structure into our days, we were able to start somewhere. Moment to moment, we attempted to give our very best, if not more, for our child’s well being. Because of this, I believe that when I look at who my son is today, standing right in front of me, all our struggles have paid off in the grand scheme of things. Our life was never easy, hardly ever calm, and without a moment that I was not correcting some type of behavior, but it has been an amazing journey that I am truly proud to call our life.
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