17 Slices
Medium 9781574412697

Sit, Quiet Hands, Look at Me

Dan E. Burns University of North Texas Press PDF

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-elevenmonth-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 her.

“Come with me,” said Ms. Seevers. “I want you to see something.”

What trail of destruction had Ben left behind him now? As we walked to the portable building, the cellblock, I apologized for

Ben’s behavior. “He’s off his medication. It’s making him worse.

We’ve tried everything to control him.”

Ms. Seevers swung open the door and there was Ben, standing on the seat of his little desk chair, waving a drumstick, and screeching like a power saw.

“Sit, ” the teacher commanded. Ben sat down. She took the drumstick away from him and gave him a piece of goldfish cracker. He waved his hands in front of his face and hummed like a band saw.

“Quiet hands,” she said. He rested his hands in his lap and stopped humming. “Look at me,” said Ms. Seevers. To my astonishment, he did

See All Chapters
Medium 9781574412697

Progress and Challenges

Dan E. Burns University of North Texas Press PDF

Progress and

Challenges

I’d done my part: set up and run the pilot program, hired six thera-

pists, 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 coordinator.

By October 1995, eight-year-old Ben was making stellar scores

(80 percent–100 percent) in attention, facial imitation, receptive color, receptive names, building blocks, beads, sorting and picture communication. We planned to follow up with two years of discrete trial therapy, twenty to forty hours per week, then mainstream Ben into the public school system.

At work, I was proud to be associated with a real research university and working on a Defense Department project. The God’s

Guarantee Committee at our church had been praying that I would be “fully restored” from all my losses. I thought that might be asking a bit too much, but I started saving for a house and I bought medical insurance for Ben and me, thankful for my new position.

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

Ben At School

Dan E. Burns University of North Texas Press PDF

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 pants.

He’d also learned to imitate the vowel sounds in saw, see, and up, and the consonant sounds M, S, F, Wh, B, and P. My student therapists were rehabilitating him like a polio victim, restoring his atrophied neurological system.

Best of all, he had learned to imitate. I could show Ben what I wanted him to do—make a fist, stick out his tongue, cover his head with a blanket—and he would do it. He no longer needed food as a reward: “Good job, Ben!” was reinforcement enough for him. I was confident that he could learn anything we had the patience to teach him. At age eight, he was ready, I thought, for school.

But I was apprehensive about the Dallas Independent School

District. They’d fired the only teacher who’d made a breakthrough with Ben. When I picked him up or dropped him off, I often stayed for a few minutes to observe and to chat with the pupils. Jason, a bright, attractive boy, about a year older than Ben, was bouncing on a foot trampoline.

See All Chapters
Medium 9781574412697

Expect a Miracle

Dan E. Burns University of North Texas Press PDF

Expect a Miracle

In April of 1995, as Easter approached, I revived my diary. Many of my recollections from this period are based on diary entries.

April 2, 1995. Seven-year-old Ben in tow, I went to a Holy Week healing service with the Reverend Shelley Hamilton, a minister at my church. “Agnes Sanford says, ‘Expect a miracle,’” I reminded her.

“Where is the miracle?”

“The miracle must happen in you,” said Shelley, “and in Ben, and in everyone in your family.” She prayed for me, “God, we challenge you. How long will this man have to stand here at this altar in pain?”

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 a consistent environment; that I could not meet all his needs by myself. Sue couldn’t do it either.

See All Chapters

See All Slices