A Father's Story of Autism
Publication Year: 2009
Published by: University of North Texas Press
Title Page, Copyright Page
This is not the book I had hoped to write. Soon after Ben was diagnosed in 1990, I began keeping a diary. By 1995 I had accumulated more than five hundred pages of observations, fears, and hopes, all shaped by the vision that someday he would emerge from autism and re-enter the world practically indistinguishable from someone who had never been afflicted. Indeed, hundreds if not thousands...
I am indebted to the many professionals and family members who walked beside me on this healing journey: To Dr. Bernard Rimland, who established Defeat Autism Now! and pioneered the behavioral and the biomedical treatments that are helping so many children. His personal response to my queries nudged me in the right direction. To Dr. Constantine Kotsanis, who helped pioneer the new...
Part 1: The Storm
Wished upon a Star
The Carrollton Public Library didn’t smell like an office; it smelled of cedar pencil shavings and Windex, an elementary school classroom. The tables were populated by schoolchildren writing their book reports. I was dressed for success: suit, tie, and briefcase. I didn’t belong here. Likely a pedophile, the librarian no doubt...
“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...
Sue and I tried Freewill Baptist Academy. The Baptists surrendered by the end of the week. White flag. But Sue and I had no such option. We’d have put Ben in a basket and floated him down the Nile if we thought we could get away with it...
Part 2: The Journey
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...
But even as Ben rallied, the stress on the family was taking a toll. July of 1991, Sue and I entered family counseling, trying to save our twenty-four-year marriage. As summer blended into fall, our relationship continued to unravel...
Part 3: Oz
Sit, Quiet Hands, Look at Me
July 1993. I pulled into the parking lot of Walnut Hill Elementary School, the Total Communication Unit where five-year-eleven-month-old Ben was housed. His new teacher, Ms. Seevers, had called me. She was waiting for me in the office. I was not looking forward to meeting...
The Benjamin Project
If no one would help me, I would have to recover Ben myself. I rented a suite in the back wing of Rainbow Apartments, an out-of-the-way, sunny third-floor location where Ben’s tantrums would be shielded, I hoped, from the prying eyes of neighbors and Child Protective...
Expect a Miracle
With Easter Sunday just days ahead, I struggled with my faith and with my role in Ben’s recovery. Mom argued that Ben needed to be placed in an institution. “You’ve worked with Ben for a year now,” Mom said, “poured everything you had to give into him. When others stumbled and fell, you kept going.” I agreed with most of her points: that Ben had not recovered; that he needed...
Progress and Challenges
I’d done my part: set up and run the pilot program, hired six therapists, and facilitated the first difficult year of therapy. I handed the reins of the recovery program to Jon Beckman, a Lovaas-trained consultant. On June 3, 1995, Beckman ran a sixteen-hour workshop for my therapists, then stayed on as project...
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 backseat 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...
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 At School
On the home front, Ben was making good progress in his discrete trial program. He’d mastered catch and throw ball, flush toilet, hang up coat, stack dominoes, chain paper clips, blow up balloon, fold wash cloth, pour water, nod yes and no, spin quarter, empty trash, hang up picture, kick ball, and zip...
Joining forces for Ben, Sue and I looked for a place to settle in together. During the spring of 1997, I drew circles and lines on the map—school, Bachman Recreation Center, routes to work. All pointers intersected at a block of older apartments just a short hike from Gooch Elementary, Ben’s school. The once-proud apartments, gone...
Within a few months, Sue’s apartment deteriorated, the second one she’d trashed. Roaches erupted and multiplied as if by spontaneous generation, hatched from festering food. The apartment smelled like a cat box. Judy refused to do therapy at Sue’s. She brought Ben over to my apartment. “Sue said something about my mother that was so repulsive and...
Part 4: Never Give Up
Over the Rainbow
In August of 2001, the summer that Ben turned fourteen, I bought a condominium in Oak Lawn, a leafy, gentrified Dallas enclave near the city center. Sue would pick Ben up from school, feed him her home-cooked gluten-free dinners, and bring him to me for the night. We alternated weekends for a while, but Ben slept better at my place. He stayed. Ben and I became a family unit. Letters arrived...
As Ben and I waited for the parade to start, standing in the shade of a huge old cottonwood tree and sharing a blue snow cone, I thought about how far we had come, and not come. Two decades earlier we began our journey. Me, the Cowardly Lion, kicking holes in the wall and fearful that I was not up to the task...