26: Bridging the Gap

26: Bridging the Gap

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

Bridging the Gap

In the depth of winter, I finally learned that within me there lay an invincible summer.

~Albert Camus

I glanced in the rearview mirror; my son had balanced his book and his beloved dictionary on his knees, allowing him to look up any new words as he sped through yet another paperback.

As we drove towards the surgery, I wondered how to word my son’s latest crisis to our family doctor, who has journeyed with us and our son’s high-functioning autism for many years.

“What will you tell him?” my husband had asked me earlier.

“I don’t know. Maybe I’ll just tell him that our son has an appetite for paper, playing cards and workbooks instead of cereal and toast!”

“At least this time he picked something fibrous,” he replied cautiously, unsure if I was ready yet to find humor in the reality that our son was again eating things he shouldn’t be.

Sensory issues weave a pattern around my son, affecting the choice of materials, length and color of clothing he’ll wear and his ability to cope with noise and visual triggers. I can’t pretend to understand his inflexibility about certain foods: why cheese is his enemy but pizza is his friend, why ice cream must always be brown and only eaten in a cone, or why sleeping on a tiled floor is more comfortable than a bed. For him, it seems painful to live like this. For me, it’s exhausting.

The list of his sensitivities is lengthy and ever-evolving, but after many years I have at least stopped asking him “Why?” on a daily basis. The answer simply is “Because.” We work hard on these issues, doing our best to understand him without allowing his obsessions to rule us. Sometimes his inflexibilities pass — a passionate hatred of buttons one year was barely remembered the next — but it’s a complicated balance and one that often ends in frustration.

Since his toddler years, our son has struggled with strong cravings for inedible things. His list of favorite snacks has included mud and licking the soles of dirty shoes. Still, his latest obsession had caught me by surprise.

“Why do you have all these torn pages in your school books?”

He looked up. “Oh, those are my teethmarks, from where I took bites.” He gave me a small, kind smile, as if to say, “Wow, I can’t believe you didn’t already know that.”

My son explained that he couldn’t help it (a recurrent theme), his body just wanted to swallow paper. And, as you would expect, the school was full of the stuff. So like a kid in a candy shop, he was consuming copious fiber goodies every day.

We alerted the school and tried many tactics to help him stop. We talked it out, threatened punishments and bought an expensive chewy stick recommended by the occupational therapist. But despite our valiant efforts, the problem escalated and I started getting calls from the teacher.

“We did cutting in art today, and I found him eating the strips of paper that were meant to be thrown in the bin!”

The teacher was shocked by his behavior and I did my best to feign despair, though I wasn’t really feeling frantic. We had dealt with worse over the years and I hoped it would resolve itself. But within a few days of her call, I caught him carefully peeling and eating the shiny colored covering on a pencil and began to doubt myself.

Now, sitting with the doctor, I shared this background information with him, humbled by my need to ask for help yet again. We spoke in the code language of adults, although we could have talked freely. My son was distracted, having already climbed onto the examination table and pulled the curtain closed in order to check his own blood pressure — a game he played at every appointment. As we chatted, we could hear him wrap the cuff around his arm, pumping away vigorously. Our doctor was kind enough to let him, until it became obvious that either my son or his blood pressure machine were about to explode, at which point he moved quietly behind the curtain and helped my son release it without any rebuke.

We encouraged my son to sit down and join us but he wasn’t finished playing. He walked over the weighing scales, and stood heavily on them proudly yelling out his weight — loud enough for the whole waiting room to hear.

“This week, he graduated from paper products to playing cards. I found him in his room with a decapitated Jack of Spades. When I asked him why he’d eaten the card, he told me not to worry: there were three more Jacks in the pack!”

The doctor glanced over at my son and then back at me, and we shared a small smile that acknowledged the thread of humor that runs lightly through these conversations. Our doctor has a very special relationship with my son. He recognizes his inner spark as a strength that is greater than his oddities. The few others that I’d told about the card eating incident had been horrified. Reactions ranged from concerns about the toxicity of the plastic coating to less-than-subtle judgment calls. I wasn’t sure how the doctor would handle my son today, but I knew it would be gently.

My son was very open with him about his desire and inability to stop eating stationery supplies. Their dialog made it sound so natural, as if this was a common complaint in family medicine.

“You know,” the doctor told him, “we all battle with things that our body wants us to do but we know we shouldn’t. You’re not alone on that one. It happens to me too.” At this, my son stopped fiddling and looked in his direction.

“I also want to eat things sometimes that I know I shouldn’t. So I tell myself, ‘No.’ You want it, but you can’t have it. It’s not easy, but I really think you can do it.” The doctor let his words settle in my son’s mind and then together they discussed tactics for winning the war of willpower.

I thought of my own food battles — with cappuccinos and cheese buns and wondered how different my son’s demons were from mine. I’d been struggling to relate to my son’s behavior. I knew that cognitively we could blame sensory issues but I felt angry, embarrassed even, about his lack of control. But the doctor was telling my son that his challenges were not so different from other people’s — we all struggle with something.

Since that visit, the packs of playing cards have remained intact. The problem is not fully solved, and probably never will be, but when my patience with my son wanes, I try to remember that he sits on a spectrum — of autism and sensory issues. A curve where no one can say with certainty where the so-called “acceptable behavior” begins and where it ends. If my son and I were to step towards each other, we might find that we’re not as far apart as I sometimes believe.

~Caroline Saul

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