“Descent to the Land of Swuck: An Essay on Sensory Challenges”

How do you climb a mountain when you don’t have any training? Probably you still your mind. You focus on each challenge in front of you, and not on how far away the summit is. And you listen to the experienced climbers’ voices.

How do you descend that mountain? I have no idea. I would have to ask A, and he doesn’t give up his secrets that easily.

When we moved into our current home, A was still a baby, so we attributed many of his autism symptoms to New House Malaise. Of course we were slowly disabused of that notion.

One memorable night, we woke up to hear him screaming. We took turns to try everything–diapers, milk, burps, climate control, temperature readings, hugs–we really did everything. He didn’t want to be carried or sung to or read to or sat with. Since he wasn’t into nocturnal attention seeking, it had to be something really disturbing.

Four hours later, as the screams raged on, I collapsed onto the carpet next to his crib, defeated, and ready to join the scream choir. I lay there, taking stock of the room, stilling my mind, shutting out the raging, and asked myself, “What is this room telling A? What does he want me to know?” I made an effort to use one sense organ at a time, taking the room’s pulse…

…And got it!

His baby monitor had dislodged from its base, and the light was blinking. As soon as I fixed, it, A was asleep in about forty seconds. Ruefully, I took my bone weary self to my own bed, thinking, “Well, that only took me a few hours!”

I wish I could proclaim that we soon learned everything there is to know about sensory dysfunction, but that would be a huge and obvious lie. It’s an ongoing journey, and we never rest on our laurels because every turn in the road creates another steep learning curve.

In a sense, that steep ascent is our family’s Mount Kailash. Watching A try to cope with unexpected touch, sound, taste, I’ve always felt he is like Shiva, enjoying his well earned detachment that others spend years trying to achieve, and we, with our therapy goals and squashy hugs and potential violations are the noisy world below, always clamoring, always expecting him to live in the muck with the rest of us, and always asking him to interrupt his meditation and climb down the mountain to meet us. We are laughingly certain that he practices tying shoelaces, sounding out consonants, and eating new foods only because he granted us a boon at some point, and must now play it out.

We, in turn, have learned humility in the bucketfuls. How can we claim to understand, we who seek out conversation, laughter, social groups, new experiences? When we need quiet time, we draw a few boundaries, but soon we rejoin the world, banging and clashing with renewed vigor. And he watches us, fingers in ears, wondering why we coaxed him to sea level but forgot to tell him that it’s so chaotic down here.

Living with all this sensory hyperawareness is eye opening for us. One of the first life skills A mastered was putting on socks, so that his bare feet didn’t have to touch the ground. He walks on his toes to minimize the sensation, and now has to have physical therapy to bring his heels back down. Sometimes we have to hug him from behind, or if I want to kiss him, he gingerly proffers the top of his head when no other skin contact is acceptable. My daughter, G, has her own triggers. Her unsuspecting grandmother once rubbed the soles of her feet together, and G had to leave the room. We named any friction sound like that ‘Swuck Swuck,’ and if I accidentally do something equally disturbing, she stills my hand or leg and says, “Swuck Swuck.” Indeed.

If A’s nerves are jangled, I find myself carefully plotting out what tasks I can perform without making that already taut wire twang. There is always the dance of living our lives while acknowledging his difficult days. A few times, I’ve run upstairs and used the blender on the bathroom counter, away from his snappy turtle aura. If I’m working in the kitchen, I make sure not to look directly at him. My husband and I text each other while sitting in the same room so that our voices don’t careen into the silent void. If people call, I don’t answer. Still, there are times when he asks to go sit in the car for a while, a cocoon of control where he can stare at the back of one of our heads and let the horrors fade. We all sigh guiltily with weary relief after he’s gone to bed at the end of a day like that, drained by our self censoring, his screeches, the way he bares his teeth, crosses his eyes, and occasionally lashes out when everything is too much.

On a good day, though, is when we get our rewards. He gives us hugs, looks us straight in the eye, his own eyes brimming with laughter and mischief, demands tickles, wants to help and be part of the group, is ready for any outing. On those days, he asks for a blanket warm from the dryer and sighs with joy when it’s laid on him. He lies on his tummy and enjoys the stroke of a hand on his scalp and back, the murmur of a parent’s voice telling the story of his busy day. He drifts off to sleep, his bed a ship of dreams, tethered to the world of the senses, but not trapped by it.

The brain is an amazing lump of possibility. If it can make a blinking baby monitor seem like a monster, and a casual greeting come as a hideous jolt, it can also turn swimming lessons into meditation, and a sister’s piano practice into a lullaby. And it can take a boy shrinking on the mountain of his sensory dread, and lead him down gently into his own body, so he can occupy it with the cautious abandon that is so inherently his birthright.

Radha.