As I was working on a final portfolio for a class someone suggested that I share this story on Deeds blog. After some thought I decided to post it. It’s amazing to us how far Deeds has come since the time of this story. Some things have changed for the better, others for the worse but he is still our amazing little man. More than anything I have changed. I have grown and learned to see the world through a new set of eyes: Deeds.
Primitive
The zoo was wild that day. Not because of the exotic animals we viewed, but because our son was over-stimulated by the chaotic crowds from the moment we stepped through the gate. My husband Jeremy and I had been preparing for the large family outing for weeks, showing Dieter pictures of the animals he would see and even telling stories about crowds of people. My sisters didn’t mention the trip to their kids until the day before and couldn’t comprehend why it was such a big deal for our son, requiring so much prep work from us so long in advance. I can give you that answer by using one word: autism.
Our Dieter, like many others with autism, has struggles with a myriad of sensory perception issues. Sounds that are loud or surprising can cause an overreaction to an extreme degree. For us, walking around the crowded zoo was like stepping into a war zone. The only reason we even attempted such a congested atmosphere was because we knew there would be understanding family there to support us.
Within ten minutes of passing through the gates, Dieter was flapping his hands. The action was a warning sign to us that he was on the slippery slope we know as sensory overload. To an outside observer he looked like an overactive child, but to my husband and me he looked like a ticking time bomb.
Anticipating the explosion we walked from exhibit to exhibit with caution. Intentionally avoiding the overly crowded zones seemed to be working well for us until we turned a corner and came upon the gorilla exhibit. It was intensely crowded. As the rest of our family was about to move along to the next exhibit, the area cleared and there was a sudden lull. The sudden calm allowed my little Dieter to walk up to the glass observation window alone. He could undertake the task without having to worry about being jostled or touched by others. Neglecting the rest of our group, I sat and studied Dieter as he put his little forehead against the glass right next to the furry beast sitting in the shade on the other side. My son was peaceful for the first time all day. As I watched my parents and siblings guide the rest of the children around a corner, I told Jeremy to go ahead with our one-year-old daughter. He understood my hesitance in disrupting Dieter when he seemed to be decompressing. Giving my hand a gentle squeeze he turned and started walking after the rest of our family.
The glass was smudged and dirty. My toddler sat with his piercing blue eyes silently observing the large primate on the other side. Slowly the massive figure placed his mud covered hands on the window, right at the level of Dieter’s gaze. I watched and waited for my son’s reaction to the attention. Holding my breath I braced myself, worried that the sudden change in my son’s visual field would trigger a large meltdown. With all the willpower I could muster I stood back, watching and waiting. Dieter carefully placed his hands on the smooth surface of the glass.
My son, who’s constantly moving and rarely makes eye contact, just sat frozen and stared into the large brown eyes on the other side of the window. The gorilla moved one hand down, directly opposite of Dieter’s. While the curious children who had begun to take over the space giggled, their parents pushed them closer hoping the animal would have the same moment with their offspring too. These other children showed their underlying fear as they flinched away from the huge moving hand. My child just watched, unwavering, unafraid. A tear slid down my cheek as Dieter smiled; a small sincere honest smile. It was a gentle grin that spoke far more words than I had heard him mutter in his short life. My young child, who screams at most human touch and interaction, connected with a primate on a level I will never fully understand.
I wish I could say that the tears I shed were out of pure joy, the honest truth is it was a mixture of emotions, which included pure agony. For three years I had tried to connect with this child on every level I could possibly think of. Selfishly I wanted nothing more than his pintsized arms to circle around my neck while he spouted proclamations of childlike love. Instead I had a son who couldn’t speak, and would throw tantrums and fits that seemed to last eternities. These episodes were exhausting for all of us, often leaving my sweet husband and me in tears.
Doctors and therapists gave us words for what was going on: autism, periventricular leukomalacia, epilepsy, and mild cerebral palsy. The only words I could initially think were: different, broken, wrong and disabled. Parents frequently say that when they received the diagnosis of autism for their child, they were sent off with very little hope and very little information. We often feel lost, navigating an unknown ocean without stars to guide us or a map to show the way.
In family pictures we would try and hide the fact that he was often fighting us when we held him, attempting to make everything appear perfect. I would hope that others wouldn’t notice his blurry hands and feet showing his constant movement. I altered pictures to hide the tendons on my hands that would bulge as I strained against his adult like strength. I was more concerned with how others perceived us than I should have ever been. I’m ashamed now to think back on all this, but in those early years all I could think about was how much I hated autism and what it took away from me.
Focusing back at the scene unfolding in front of me between Dieter and the gorilla, at the time I felt unexpected rage course through my veins. This was a tremendous breakthrough for my son, but I just wanted to scream. At that moment I hated autism more than ever. The only thing that I felt more fury for at that moment was the primate. That massive, filthy, smelly gorilla was on the receiving end of attention I desperately longed for and sought for three years.
Minutes felt like hours, as the world moved around this odd couple. I started to get irritated parents shooting me looks that spoke a thousand words: why don’t you move your kid so ours can be with the gorilla too? I ignored them, trying not to let them see the pain or tears in my eyes. They could never grasp the earthshaking experience that was going on.
Since we stopped the crowd of people had grown significantly. Before long, the grilling sounds from all the people trying to capture the primate’s attention reached Dieters ears. People were pounding on the glass, yelling at the gorilla, shoving to get a better view. He couldn’t process it all and I soon realized we were in trouble. My son’s familiar deafening screeches burst through the air. Dieter covered his ears to drown out the noise of the people around him. The shocked crowd watched the formerly serene boy. Rhythmically, Dieter repeatedly hit his forehead into the glass. Quickly I jumped forward to intervene. As I pulled him from the window the crowd turned back to the glass. Retreating from the scene, the gorilla quickly ran over a small hill away from the noise my son was making.
At this moment I was glad my son didn’t seem connected to reality. Comments from other parents and onlookers increased the tears that had been rolling down my cheeks. Scooping up Dieter, I turned to leave. Moments like this are why we avoid crowds. Jeremy and I have become masters at watching for warning signs of overstimulation so that we can spare others the trauma of his violent reactions.
Dieter looks like any other child. Many of the disorders he battles are considered “invisible disabilities.” To his detriment, he is also quite tall and is often assumed to be older than he actually is. Because of this combination of factors he is rarely offered much compassion when he goes from zero to sixty a split second. Jeremy and I get even less. There is no getting used to the comments about our parenting that come from complete strangers. We often get questions asking us what is wrong with our child. As his mother the most painful remarks are hushed and murmured words in passing: brat, spoiled, undisciplined.
Fighting Dieter’s thrashing, I passed the scowling faces in the crowd and found the rest of the family at the next exhibit. Once again we were surrounded by familiar faces, showing concern and love. Instantly my son was taken from my weakening arms, while aunts and uncles aided in calming him down. Their gentle love and support was like a warm embrace that made the tears fall even more steadily down my cheeks. My husband handed me our daughter who instantly put her pudgy arms around my neck and looked at me with concern in her eyes. I hugged her and smiled into her little neck as I breathed in the fresh smell of her baby shampoo. I smiled, basking in all the affection that she showed that her brother could not. Even after the battle, I discovered I was glad we came to the zoo. While the day ended in tears, for just a moment Dieter’s world was at peace, and so was mine.
