Salvatore (Sam) Benetatos
“Autism from a Dad’s Perspective”
I see my son every morning before I leave for work. He is the first one to greet me on a daily basis. Today was no different. I walked down the stairs with him trailing right behind. My wife has already been up at this point for 30 minutes. Breakfast is ready, and it’s the same as it was the morning before; scrambled eggs (cooled to room temperature), one half dollar sized pancake freshly made by mom, with melted butter and syrup covering the entire diameter of said pancake, and fresh cut, sweet, fire engine red strawberries and blueberries with a deep blue/violet type color. For a brief moment, I envy the wonderful breakfast spread that has been laid out for my son, but then I remember he has had this breakfast for the last 3 mornings in a row. Luke is a creature of habit, and sometimes deviating from that routine can cause great anxiety. As I am making my exit through the front door, I told him goodbye and after a little prompting, I received a goodbye in return. I walked to the end of the driveway and waved to my son as I slowly sunk into the seat of my car (I did this more for myself than for him). He did not wave back.
I am the father of a child on the autism spectrum. My wife and I have two children; our oldest son Luke is 6 years old, and our baby girl Quinn is 2 years old. Luke was diagnosed as being on the autism spectrum when he was 22 months old. The date stands out in my head like a bright, humming neon sign against a dark background, January 29th 2014. The word “autism” hit me in the gut like a cannonball fired from a powerful cannon at close range. It felt like a nightmare. It was almost like I was watching all of this happen from outside of my own body, like watching an episode of a sad TV drama, pulling at emotions I normally keep locked deep inside. I did my best to hold back tears and be strong. I eventually failed at that soon after leaving the doctor’s office. My wife gave me a lesson on what true dignity and grace is in that moment. She had taught as an early childhood special education teacher for several years prior to our son’s diagnosis. She has always had a delicate touch. Her reaction to the situation then and always has been one of patience, understanding, caring and love. I’ve never met a more self-less person. The same cannot be said for me. To say that I am quick tempered, impatient, and high-strung doesn’t begin to cover it. However, after four years and counting and through good times, hardship, happiness, and tears; our family, and most importantly my son, is thriving.
Autism has impacted my life much more than I could have imagined. It has changed me and shaped the person I am today. I’ve typically maintained a level of silence or vagueness regarding my thoughts and feelings on my son’s autism, never revealing too much information about or my emotions towards it. I think there are a lot of fathers like me in similar situations, regardless of autism or not. I was raised to believe that men were to be the backbone of the family, that I should not show doubt or fear. So, I have always buried those feelings, only exposing them to my spouse, sometimes letting all of my fears and frustrations gush out like a geyser in a national park. Typically, I don’t even talk to my friends or family about what we are going through, because since you don’t have an autistic child, you simply cannot understand exactly what it’s like. I don’t mean to imply that friends and family don’t care, only that they may lack the true understanding of the situation. I’ve seen the judgmental eyes of family or friends that seemed to say, “Yes, their child is autistic, but there is no excuse for that kind of behavior”. Once again, this is not out of malice, but misunderstanding. Also, as much as my friends want to be helpful on the subject, guys’ advice is usually oversimplified: “Keep your head up,” “It’ll be all right,” “It is was it is,” just to name a few suggestions. The one I hate the most is “God only gives us what we can handle”. Let me assure you, I have had days that made me question if I could handle this at all.
“Your son has autism”. Four words I was not prepared to hear. When I heard those words spoken for the first time, I felt complete loneliness. I was lost in a dark place of emotion and confusion, with no sense of direction or knowledge of how to move forward. Nobody prepares you for moments like this. If only there was someone to guide me through, maybe someone who understood where I was in that moment. For all these reasons and more, I’m writing this to serve as a reminder to other parents of autistic children that they’re not alone. I know some of your fears and worries. I believe I know how you felt when you heard the diagnosis. I might know your first concerns as well: Will he ever talk or be able to express himself? Will he be potty-trained or be able to dress themselves? Will he understand danger or dangerous situations? Will Luke have friends, and the most heartbreaking, will he understand how much his family loves him? As my son Luke has grown, we began to see answers to those questions, all on the positive side. Adolescence will quickly approach however, and a new set of questions and concerns will take hold. Will he ever get to drive a car, play a sport, go out on a date, get a job, live on his own, fall in love, get married and have a child of his own?
I know that you love your children and wouldn’t trade them for the world. I know this because Luke is the most important person in my life. He is also my hero, always knowing when his dad needs some extra love that day. I know when people tell you, “Have hope, have faith, pray and God will give you the answers,” that doesn’t console you. I know this because it didn’t work for me when watching my then 2 ½ year-old son struggle to communicate his needs with me begging God to help me understand what he was trying to say. There were no more desperate moments in life than trying to stop him from hitting himself or watching him cry, unable to tell me what’s wrong. I know what it feels like to be pessimistic, having to learn to temper expectations and dreams for my first born child, my only son. I know and understand the weight on your heart that feels like a huge slab of unmovable rock trying to block out the sunlight.
I also know you’ll never give up on your child, because I never have and never will. I know you will fight harder for your child, because that’s what we did and will always do. The countless hours of more therapy, more activities, more time together, more understanding, you will do everything you can think of because you love your child. Eventually, through all the heartache and worry, I know you will be rewarded because I am. Every time my child smiles, it is that much brighter, warming the depths of my soul for a thousand lifetimes. Every hug I get feels that much tighter, taking a piece of my soul with him when he releases his embrace. Every time he laughs, it seems that much louder, filling my heart with the happiness it needs. I can tell you that there are no little victories with autism. Every step forward, every improvement, no matter how slight, is a huge accomplishment not just for Luke, but for our family as a whole. Luke will not always have an easy road, but he has shown me the meaning of unconditional love and the power of determination & perseverance.
I do not expect pity or praise by writing this. I’m writing to tell all parents out there — I know how you feel. I’m one of you. I’m sympathetic and respectful of you. You are not alone. I believe we all feel the same things regardless of your personal situation. Don’t let those feelings own you. Love your children; they will give you hope. Love your spouse; they will give you love in return. Love your family and friends; they will give you support even when you don’t realize you need it. Love yourself, because you’re doing the best that you possibly can.