Monday, May 28, 2018

Sensory Saturday: Niggling Systems to Balance

In the beginning, twice a month - because that's all the time we had - there was Sensory Saturday.

We stood barefoot on damp earth in drizzling rain, watched and listened as cars zipped by. We climbed trees and stomped in puddles. Waded into murky lake water, our bare feet slurping the gooey clay. We immersed fingers in tubs of balls and poms, plates of jelly, baskets of squeezable things. Listened to birds, wiggled toes in wet grass. Enjoyed bubbles, beans, colored rice, shaving cream, play-doh, water balloons, beads, bells, dirt, mud, bowls of wet stuff. We added scent, varied sound and color, incorporated light and motion, modified textures.

Why? Exposure to lead in the early years alters the function of a child’s developing brain. Social and educational deprivation, limited life experience and nutritional deficiencies inhibit her mental and physical maturity and influences his future performance in school.

And sometimes? All of this together? Impairs an individual’s ability to process sensory input.

Sensory Processing Disorder (SPD) is a brain condition that affects the brain’s ability to perceive and respond to sensory information causing…(hypersensitivity) to surrounding environments.

There are 8 sensory systems that may be affected when the brain and body misconnect:
  • Visual (sight)
  • Auditory (hearing)
  • Tactile (touch)
  • Olfactory (smell)
  • Gustatory (taste)
  • Vestibular (part of the vestibulum in the inner ear, involves the ability to coordinate movement with balance)
  • Proprioception (ability to track the body’s position in space; recognize stimuli and respond by appropriately contracting muscles and joints)
  • Interoception (ability to sense hunger, thirst, heartbeat, need to eliminate, etc.)
The causes of SPD are not yet fully understood, although some form of the disorder usually exists where there is autism or learning differences like ADD/ADHD. Sensory deprivation, especially when it occurs in the early years, may be another factor.

When Wonder Boy and Amaze Girl came to live with Super Daddy, both had sensitivities to light, sound and texture. They were fearful, clumsy, could not catch a ball, ride a bike, stand on one foot, productively hold a pencil or utensil. Wonder Boy refused to eat anything but frozen pepperoni pizza. At 5 years old, he was not potty trained or sleeping through the night. Both had an overwhelming need to be touched, held, squeezed, hugged.

Increasing the children’s tolerance to a variety of foods, along with gaining cooperation when it came to toileting would take another year of focused, regularly occurring effort. Meanwhile, our attempts to waken under-stimulated senses eased transitions, calmed, soothed and brightened little bodies and minds.

After sensory play, the children were more open to learning.

We filled small pools with blue sand. Tiny toes touched the cool, azure grains. Soon, fingers, hands, arms, whole bodies were involved. The children poured sand down shirts, trickled it into plastic containers. They smelled, touched, saw, listened as the textured grains complained.

Later, there would be every day reading, writing, a trampoline, bicycles, swim, baseball, gymnastics. Doctors, school, music, speech and occupational therapy; diagnoses. There would be activity, growth, progress.

But first? Twice a month? There was Sensory Saturday.

Friday, May 11, 2018

Sophie's Runners

Wonder Boy glistened with sweat. He pointed at runners wearing bright, yellow Sophie’s Run tee shirts like his as they passed him in ones, twos and bigger groups. He howled in frustration, hit his head and threw himself, bum-first, to the pavement.

With my right arm in a cast I was not able to participate in Sophie’s Run, the annual 3.4 mile charity event that provides AAC devices to individuals with communication needs - including Wonder Boy. Aunt Katie ran in my place. Super Daddy and Amaze Girl competed together. Wonder Boy, Aunt Kimmie and I were to be cheerers.

We’d watched the sea of runners in yellow shirts gather along the tree-lined road. A whistle blew and the crowd surged forward. Wonder Boy clapped. “Hooray!”

As the last runner passed us, Wonder Boy eyed the receding blur. He pointed.

“Do you want to run?”

“Yes, I do!”

What could it hurt? I thought. We’d go a bit, then circle back to Aunt Kimmie, food and games. Then we’d head to the finish line to cheer for Super Daddy, Amaze Girl and Aunt Katie.

At a nod, Wonder Boy ran. Arms swinging, knees pumping, head high, he cheerfully lapped one runner after another. We did not see a circle-back-to-the-start point.

Half-way through the course, as it sometimes happens in autism (and life), our race suddenly, inexplicably ended.

Wonder Boy stopped. He walked backwards. He screamed. He flailed. His scalp glittered. A homeowner called from a nearby yard. “Do you need water?”

There are times it’s not practical to carry a communication device: bathtime, for example. While using the restroom, the machine stays in the hall. Wonder Boy does not jump on the trampoline with his talker draped across his chest. And he doesn’t generally have it on him when he’s involved in active play. Like running.

Very unfortunately, Wonder Boy’s talker had been left at the race start.

We were halfway through the course and alone. The last runners and end-of-line vehicles were gone. I had a broken arm, Wonder Boy was nearing melt down and I was in tears. What were we to do?


There was a rhythmic whirring, like the benevolent thrumming of angel’s wings. Heaven reflected light on a golf cart hovering nearby. The dark-haired stranger at the wheel was shrouded in a golden halo. “I’m Robert,” he said, in a smooth voice. He pointed to his purple Sophie’s Run tee shirt. “I’m a race volunteer. Can I help?”

Wonder Boy slid into the cart beside Robert. I cozied next to Wonder Boy, who was enraptured by Robert and his machine.

Robert gently calmed a grandmother’s tears and eased a little boy’s confusion. He took us to a water station and drove us to the final leg of the race, where Aunt Katie was waiting.

“Do you want to run?” she asked Wonder Boy.

“Yes, I do!” he replied.

Wonder Boy and Aunt Katie raced over the final bridge and crossed the finish line together.

Wonder Boy clapped. Hooray!