Aggression: Dark Days and Darker Nights

From the time Vic sprouted his first tooth, he was a biter. He bit himself, me, his father, his grandparents. Anyone who got too close was fair game in his book. He didn’t limit himself to biting, either. He also learned to pinch, gouge, scratch, hit, punch, kick and even choke. Yes, he did that to me on more than one occasion.

Don’t get me wrong! Most of the time he seemed to be happy. He was usually a smiley boy, full of giggles. He loved to play, to be tickled. But in the blink of an eye, he could turn.

I remember sitting at the kitchen table one day. He was five at the time. A boundless ball of energy, he thrived running full tilt from one end of the house to the other, literally bouncing off the doors. Back and forth he would run for up to an hour at a time. He had ricocheted off the laundry room door, near where I sat, and ran full speed to the other end of the house to bounce off the bathroom door. Back he came. Only this time he did not run past me. Instead, he launched himself from a distance of about six or seven feet directly at me. His little hands (yes, they once were little!) wrapped themselves around my throat, and he squeezed for all he was worth. Two simultaneous thoughts popped into my head: You are ungodly strong for such a little boy! And, you are FIVE!!! How do you know anything about strangling a person?

I pried his fingers from my windpipe, but not without making a mental note to watch more closely when he approached. Good advice, it turns out.

For several years I was covered head to toe in bruises, bite marks, scratches. I still bear some of the scars today. Every single day, there was at least a brief period of time that he seemed to become another being altogether, someone I didn’t recognize. Some days there was only two or three incidents, other days it seemed to last the entire day. A bite here, a gouge there. Even in the heat of the moment, I understood that it wasn’t him who was doing it. It was the beast named autism disguised as my sweet little boy. I knew that. I tried to hold on to that little nugget of truth. It wasn’t easy.

Throughout each ordeal, I tried to focus on the fact that every behaviour is a form of communication. For all the aggressive behaviour he exhibited, I knew for a fact that there was not one malicious bone in that child’s body. He lacked the ability to communicate verbally, so he resorted to what means he had. The trick was interpreting from his language something I could use to communicate back with him.

Learning to communicate with someone who is nonverbal is challenging at best. I became quite adept at taking a step back when he was “misbehaving,” listening to the sounds in the background, picking up any unusual scents. I learned to see through his eyes. Oh yes, the lights in this store are very bright, and one has a slight flicker. You’re right. That cereal box on the shelf is crooked. Okay, I can hear that dog barking half a mile up the road. It’s okay, buddy. You’re safe. True, that lemon scented dishwasher detergent is rather pungent. Uh oh …. Someone on the other side of this large grocery store is whistling!

There is much that we, the neuro-typical, filter out without even realizing we are doing so. The next time you are in a department store, stop. Stand in one place, close your eyes and fully experience your surroundings. Then open them again, and do the same thing. Let your senses take over. You will be amazed! The brightness of the fluorescent lights. The overwhelming visual stimuli of the products themselves on the shelves. The busyness of the people around you: walking, laughing, talking, picking things up, putting them down again. The smells around you: perfume counter, shampoo aisle, detergent. Even other shoppers have their own distinct aroma. And this doesn’t even take into consideration the sounds! People talking, carts squeaking, babies crying, cash registers beeping, music playing, announcements over the PA. So, it is no wonder someone on the spectrum who lacks the ability to process and filter this overload of sensory input can become overwhelmed so easily.

So, knowing what I knew about sensory overload and sensory integration, I realized that it was possible Vic was simply responding to his inability to cope. Maybe he is tired. Maybe he’s hungry, thirsty, not feeling well. I ran through the gamut of possibilities many times every day. I knew he was trying to tell me something, but what was it?

Regardless of the why, there was still the aggressive behaviour day in and day out. Unable to pinpoint the cause every time, I became resigned to the fact that for the time being, I was going to be used as a punching bag. An outlet for frustration. I did my best not to blame him for it. It really was not his fault.

By the time he was around 4, it was all starting to wear on me. He didn’t sleep at night. Well, that’s an exaggeration. He did sleep. For about 4 hours a night. But never all at one time. He’d sleep for an hour, then be up, raring to go for a while. Then he’d crash for 20 minutes. Up again, then sleep for half an hour. I never knew when he’d sleep, or for how long. Translation: I didn’t sleep. Lack of sleep for weeks on end, plus not knowing how to communicate effectively with my son, plus the day-to-day adventures of raising a toddler / preschooler on the spectrum, trying to maintain a household, plus, plus, plus, plus, plus.

I was tired. Beyond tired. I was physically, emotionally and mentally exhausted. I didn’t have it in me to face even one more day. I sat on the couch one day, my little man running about as he always did. He came bounding toward me with the biggest smile on his face. He reached toward me …. And I blocked him. Physically blocked him. I held my arms up, crossed like the letter x, and completely prevented my own child from touching me. I had no way of knowing if that smiley little bundle of energy was going to plant a wet sloppy kiss on my cheek, or gouge my eyes out. And I didn’t have it in me to find out.

What kind of mother physically blocks her own child’s advances? I mean, really. Who does that? I felt about an inch tall. It made me sick. It made me tremendously sad. Disillusioned. Defeated. And angry. Autism, thou art a heartless bitch! How dare you enter my home, my sanctuary, and steal my little boy from me? How dare you take my dreams of the perfect, happy, healthy boy and crush them like an insignificant bug? I realized that whatever dreams I had once held dear were mere illusions. I was devastated by a moment of clarity: I no longer even wanted to be in the same room as my child. I didn’t want to be near him. I couldn’t just give him a hug or a kiss whenever the urge struck, because I could never be sure of the outcome. I couldn’t trust him not to lash out. I couldn’t trust myself not to lash back. I was heartbroken and crushed that my son no longer had a mom he could count on.

That’s when I started thinking I could no longer keep him at home with me. I didn’t have the energy. I lacked the strength, physically and mentally, to care for him. I lost hope. I lost my self-respect. I lost myself. I started dreaming of a place he could go. Surely there was a place for him. There must be some place, somewhere, with someone who could give him what I most certainly could not. I made up my mind that such a place existed. Even if he could just go on weekends. Maybe a few days a week. I needed a break. I needed to get away. I needed him to go away.

I made lists. Lists of my own requirements for such a refuge. Lists of things I could and would do with my “alone” time. But my heart was not in it. For as I sat down and wrote out these lists, I began to wonder. Who could take my place? Who could care for this sweet little boy the way I could? Who would read five, ten, twenty stories to him each night? Who would sing to him? Who else would know his favourite songs? Who would understand the language we developed? Who else would be able to decipher the differences in the grunts he used to communicate his needs? Who else would care that the left sock had to go on first? That the tags on his shirts had to be removed before he would wear them? Who else on this planet could love him as unconditionally as I?

That night I made a silent vow to my sleeping child. I vowed to dig as deep as I needed to find the elusive strength it would take to get through this. I would not stop. I would find a way to reach him. To help him navigate this scary, overstimulating world. I would teach him about the world around him. And teach the world about him. I would not give up. I would not give him away.

The journey has been long, tiring. I have seen the darkest lows and the most incredible highs. I have cheered him on, supported him through every single struggle. I have celebrated the most minor of victories and the hugest hurdles. I stayed awake all night when he was sick. I made sure he had the best teachers, EAs and support teams we could find. I have advocated for his right for early intervention, for the right to be treated as an individual, as a person.

We have met the most amazing people along the way. Each person has left their mark. Almost without exception, each of these people has become like family. They helped me see the amazing things this boy is capable of. They made sure I didn’t give up, on him or myself. These helpers are far too numerous to name individually, and I won’t even try, because I know that just through sheer numbers, I will miss someone! But just know whether or not you are still part of our day-to-day life, we would not be where we are today without you. You have impacted us in ways you cannot even begin to imagine. We love you all, and I salute you.

Most of my friends today I would not have met if not for this journey. Other parents of children on the spectrum have become my closest friends. As have teachers, EAs, respite workers. Even those who started out as the “experts” have become close personal friends. I would never have met you if not for the diagnosis of “autism spectrum disorder – not otherwise specified.” So I definitely cannot say that this struggle has been in vain.

My family has been my rock. They have always been there. Day or night. Whether I needed a nap, a pep talk, a listening ear, or someone to offer respite. They’ve gone to doctor’s appointments, hospitals and school functions. They have supported us in every way imaginable. From the bottom of our hearts, we thank you. We love you all!