17 Slices
Medium 9781574412697

Photos

Dan E. Burns University of North Texas Press PDF
Medium 9781574412697

Quirky Ben

Dan E. Burns University of North Texas Press PDF

Quirky Ben

August 1987. Carrollton, Texas

“Do you think the hospital would take him back?” I asked Sue in mock exasperation.

“We could leave him on the steps,” she kidded. We both laughed and welcomed the comic relief. After two days of Ben at home we were exhausted. He screamed. Before feeding, after feeding, while his diaper was changed, bedtime to witching hour, Ben screeched like a madman howling through a megaphone. Twenty minutes of sleep, more screeching, another short nap if we were lucky, then back to the megaphone. Our other two kids hadn’t been like this.

But Ben wasn’t like our other kids; no, not from hour zero. First, his head was gigantic, above the 98th percentile, off the charts, sticking out of his mom’s birth canal then out of the papoose wrapper like a preposterous Tootsie Roll Pop. I held my newborn son while the doctor sewed up Sue. Big head, I thought, good. With all that space for brains, he’ll be a genius. But as the medics wheeled him down the hall, he screeched woefully, painfully.

See All Chapters
Medium 9781574412697

Doctors to the Rescue

Dan E. Burns University of North Texas Press PDF

Doctors to the Rescue

“I practice three kinds of medicine,” said Dr. Constantine Kotsanis,

gesturing, “right, left, and center. On the right, drugs and surgery.

On the left, energy fields, prayer, and spiritual healing. The center is nutrition, tests, amino acids, pharmaceuticals when you need them.

What kind of treatment do you want for Ben?”

Dr. Kotsanis was an integrative physician and a founding member of Defeat Autism Now!, a society of doctors who pioneered the biomedical approach to treating autism. We had come to enroll Ben in a study that later would become part of the Defeat Autism Now! biomedical protocols, designed to help recover autistic kids.

“We live in a marvelous age,” said Dr. Kotsanis. “Libraries at our fingertips. Cell phones in our pockets. Airplanes to France, Athens,

Madrid. Call anybody, go anywhere.” He looked at me. “So who pays”? He turned around and pointed to Ben. “He pays.”

Dr. Kotsanis’s argument was that toxic waste in our air, food, and water had reached a critical threshold. Autistic kids were canaries in a coal mine. The difference between organized crime and organized medicine was one of degree. HMOs were driven by greed, doctors in the pocket of the drug companies. But no one was blameless.

See All Chapters
Medium 9781574412697

Sunrise

Dan E. Burns University of North Texas Press PDF

Sunrise

The collision with Dr. Hitzfelder whiplashed us into action. There

had to be a medical treatment for Ben. She had just not been keeping up. Sue and I were going to beat this thing.

“Dan, the doctor didn’t say he was autistic.”

She didn’t have to.

I supposed Dr. Hitzfelder was trying to spare us. For her, the word autism was a label that would lock Ben forever in a padded cell, no medical treatment, beyond help. For me, it was the key that would let him out.

The battle began.

Sue and I had a secret weapon. In the early days of the Internet, few doctors had network access. But I had a dial-up modem.

Screech! Bawk! I logged into Medline, gateway to five thousand biomedical journals, and typed in “autism.” A stream of green letters scrolled across the screen: “Clonidine, an Alpha-adrenoceptor

Agonist, Reduces Melatonin Levels in Mice.”

Hieroglyphics. Would Clonidine help Ben? The article didn’t say. How about the next article? Hundreds of titles. Which of these arcane texts contained clues to the cure? I was going to need a medical degree to decipher the mind-numbing jargon.

See All Chapters
Medium 9781574412697

Sue, Me, and Ben

Dan E. Burns University of North Texas Press PDF

Sue, Me, and Ben

I visited Tyler State Park to hike in the Piney Woods with Ben and

Sue. Though we were divorced, Sue and I still enjoyed occasional family outings together. Sue brought camping gear, a tent, a back-

seat full of sleeping bags, pillows, blankets, black trash bags erupting with Tupperware, tin foil, and bean cans. That evening, seated beside the campfire, I played the guitar while Ben foraged for food and drank my Coke. Sue read him some stories, played telephone with him. She was relating to him well, becoming more behavioral in her approach. We had a lovely time.

“Would you like to stay the night?” Sue asked.

No thanks. I had plans.

Driving back to Dallas, I couldn’t shake the image of holding

Ben’s hand while we walked down the park road, his head bent back to see the tops of the towering pines, face awestruck. I should have stayed. What plans, what task could be more important than healing my poor, broken little family?

I decided to spend more time with Sue.

The Christmas holiday of 1995, Sue, Ben, and I went to visit

See All Chapters

See All Slices