60: The Storm Before the Calm

60: The Storm Before the Calm

From Chicken Soup for the Soul: Raising Kids on the Spectrum

The Storm Before the Calm

There is no greater loan than a sympathetic ear.

~Frank Tyger

Ah, summer. The brief hiatus when I can finally exhale, temporarily released from the rigorous demands of the school year, and allow myself a mental respite before tackling the strategies for the coming year.

Grade four was bittersweet for my son. The first term was deceptively uneventful. I was ecstatic, believing we had this autism thing licked. Surely he was learning to integrate, molding his quirks to fit unobtrusively within acceptable social parameters. Maybe he was maturing, grasping the fundamentals of self-regulation and outgrowing the tantrums just as he was outgrowing his clothing. It could happen, right?

Apparently not, as it turned out. By the second term, it was clear that we needed help. There had been some social skills classes and specialists sitting in on the classroom in years past. The result: general coping skills and strategies designed to help him fit in and follow the routines. But this despair, this volatile anger, was completely out of my league. Belatedly I realized that the only way to help him was to really understand what it was like to live in his skin. I began educating myself, amassing reference books, reading first-person accounts, attending autism caregiver workshops, listening to other parents’ stories. A whole new world opened up for me: Simon’s world.

Imagine an existence where everything you see, hear and feel is magnified to an almost painful intensity. I’ve seen Simon clap his hands over his ears often enough to figure out that he finds sudden noises and loud crowds intolerable. I’ve noticed that securing his attention when his focus is elsewhere is a constant challenge. But where I had thought that he was incapable of hearing me amidst background noise, I was surprised to learn instead that he, in fact, heard everything. Every word uttered, every creak in the floorboards, every car speeding by outside, every drip of water in the sink. He wasn’t shutting out my voice so much as absorbing everything, sorting through it and trying to integrate it in a way that his brain could make sense of it all. From a very young age, he had to learn how to process multiple simultaneous auditory, visual and physical stimuli, while other children were learning to walk and talk.

Imagine a world where you must live by arbitrary rules that make no sense to you or risk being ridiculed or ostracized. Imagine feeling like you are constantly walking on eggshells, afraid of offending someone or embarrassing yourself without really knowing why. Each unfamiliar situation would be akin to negotiating a minefield. His anxious tears when confronting changes to routine or unanticipated events make so much sense to me now.

Imagine not being able to escape the smell of vegetables being chopped in the next room. Gagging because the neckline of your shirt grazed against your throat. Struggling to adequately communicate how you feel or what you’re thinking. Having every sense heightened and your limits of tolerance tested relentlessly, and in the minutest of ways. Now imagine not being on edge or frustrated from dealing with all of these encumbrances for most of your waking hours. Personally, I can’t. All things considered, I am amazed at Simon’s usual calm demeanor. His momentary blips of panic or anger now seem completely justified to me, and I’m in awe of the inner strength he must possess in order to function day-to-day with the kind of challenges the rest of us will never truly understand.

The best part about my self-education is that Simon and I started reading about autism together and discussing his own perspective. I learned that he recorded visual memories the way we store images on film, and could rewind and scan this cerebral footage for precise and efficient retrieval. This explained his photographic memory and the way, when recalling something in the distant past, he would momentarily stop and stare intently into space. (I swear I can hear the wheels whirring as he scans his mental recordings.) He also described how he can devise and manipulate objects in his mind in three dimensions, much like a sophisticated imaging software program. This is how he has been able, since preschool, to create intricate 3D models crafted out of a single, uncut sheet of paper, formed meticulously into the vehicle he had envisioned long before making the first fold.

As it turned out, Simon’s stormy end to the school year resulted in many steps forward. In finally addressing his autism openly, he discovered that there were others who understood how it felt to be like him. And it was a relief for me to know that I could rely on other, more experienced voices to provide him with answers and guidance. More importantly, I’ve been reminded of autism’s dual nature. We are quick to label it an affliction, and equally quick to forget that it might also play a part in some of the characteristics we admire most. When I think of Simon, I think of his quick wit, his kind heart, his honesty, and his steadfast sense of honor. Whether these traits are due to autism or in spite of it, separate from it or enhanced by it, doesn’t matter to me. What I do know is that autism is nothing more than one of the many shining facets of his personality. My son is a marvel to me, and I wouldn’t change a single thing about him.

Right now, I am savoring the small triumphs of the past few months. This is the short-lived peace between the end of a school year and the start of another. This is the calm, his safe haven. I’d like to think that the worst of the storms are behind us. But the truth is that finding the balance between having to curb his natural impulses to meet social expectations, and living a life that is true to who he is, will be an ongoing, perhaps even lifelong, undertaking. For now, armed with a better understanding of the roots of his troubles, I feel hopeful that we will find better coping strategies and ultimately, a place in this world where he can confidently, unapologetically, be his true self. Storms and all.

~Jennifer Doelle Young

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