Medium 9781574412697

Saving Ben

Views: 2506
Ratings: (0)

Each year thousands of children are diagnosed with autism, a devastating neurological disorder that profoundly affects a person's language and social development. Saving Ben is the story of one family coping with autism, told from the viewpoint of a father struggling to understand his son’s strange behavior and rescue him from a downward spiral. "Take him home, love him, and save your money for his institutionalization when he turns twenty-one." That was the best advice his doctor could offer in 1990 when three-year-old Ben was diagnosed with autism. Saving Ben tells the story of Ben's regression as an infant into the world of autism and his journey toward recovery as a young adult. His father, Dan Burns, puts the reader in the passenger's seat as he struggles with medical service providers, the school system, extended family, and his own limitations in his efforts to pull Ben out of his darkening world. Ben, now 21 years old, is a work in progress. The full force and fury of the autism storm have passed. Using new biomedical treatments, repair work is underway. Saving Ben is a story of Ben's journey toward recovery, and a family's story of loss, grief, and healing. "Keep the faith, never give up." These are the lessons of the author's miraculous journey, saving Ben.

List price: $22.95

Your Price: $18.36

You Save: 20%

Remix
Remove
 

17 Slices

Format Buy Remix

Wished upon a Star

PDF

Wished upon a Star

July 1990. Carrollton, Texas

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 thought, playing hooky from work.

I should be in an office building downtown, handing speech drafts to a secretary, or on an American Airlines flight to New York to interview the CEO of IBM, or giving a presentation in the Dell boardroom.

The librarian, black-frocked Miss Colfin, hair done up in a Pentecostal bun, pretended to ignore me but I felt she was watching out of the corner of her eye. Would she think I was going to stash books in my briefcase and sneak out? Would she think it was full of drugs?

Trying to look professional, I found the card catalogue and pulled out the musty “AU” drawer.

“No, Blunderbuss,” a voice in my head said, addressing me.

 

Quirky Ben

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.

 

Diagnosis

PDF

24 

saving ben: a father's story of autism

“We tried that but he cried.”

And he kept the other kids awake, I thought.

Sue was having no more of this discussion. She hurried us toward the door.

“I’ll bring some Gas-X tomorrow. Dan, let’s go.”

The next day, Ben was in a corner by himself, rocking in his rowboat, staring in the mirror.

“He fusses when we try to make him sit with the other children,” the teacher said, glancing at Ben. “When he’s crabby like that he crawls to the corner and we just leave him alone.”

I didn’t blame her. Do Not Disturb a Quiet Baby.

“Did he take a nap?” I asked.

“I’ve been meaning to talk to you about that, Mr. Burns. No, he did not. Do you have a number where you or your wife can be reached during the day?”

On Friday, at naptime, the teacher phoned me. Ben was screeching like an ambulance siren and the other kids were going off like car alarms.

“He’s a lovely little boy,” the teacher said. “I’m afraid we can’t keep Ben.”

I shouldn’t have been surprised. I couldn’t keep him either.

 

Sunrise

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.

 

Sunset

PDF

Sunset

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.

July 23, 1991. Sue and I met with Russ Dunckley, Ph.D., a family

therapist, to discuss some issues in our relationship. Sue and I had struggled repeatedly with my sexual orientation, beginning before we were married. She knew I was gay—my affair with Joel was no secret— but marriage was supposed to keep me on the straight and narrow.

An unlikely expectation, from a twenty-first century perspective, but one that we held on to in spite of all evidence to the contrary.

By late summer of 1991, I was losing control. Beneath the fortress of our marriage, tectonic plates were shifting. I dreamed about a small city in Iowa, like Iowa City, where Sue and I had lived during our first three years together. In my dream, a building collapsed, burying hundreds. Then the top half of a glass-and-steel tower imploded.

 

Photos

PDF

 

Sit, Quiet Hands, Look at Me

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

 

The Benjamin Project

PDF

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 outof-the-way, sunny third-floor location where Ben’s tantrums would be shielded, I hoped, from the prying eyes of neighbors and Child

Protective Services.

Catherine Maurice described the staffing procedure, and it sounded straightforward enough. I was going to need six therapists working in shifts for a total of forty hours a week. Recruit college psychology students. Pay double minimum wage. Train them myself.

I set myself a goal. By noon, I would write six letters to the psychology departments of local universities, asking them to post a help-wanted notice on their bulletin boards.

I wrote out a task list:

1. Look up the universities.

2. Make the mailing list.

3. Address the envelopes.

4. Call the departments.

I froze. This can’t possibly work, I thought. The secretary who’d answer the phone would not understand what I was talking about.

Your son is what? Autistic? And you want to recover him? Ah-ha-haha-ha-ha-ha. Autistic children don’t recover. No, you may not speak

 

Expect a Miracle

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.

 

Progress and Challenges

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.

 

Sue, Me, and Ben

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

 

Doctors to the Rescue

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.

 

Ben At School

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.

 

Cold War

PDF

Cold War

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 to seed and drug dealers, were being gutted and renovated, like me.

Southern-mansion style, low-rise, verandas, hanging gardens, oversized rooms, lavish space; real plaster on the foot-thick walls, steel and brick superstructure built to last a century. Bay windows looking out on the oak-shaded lawn. Playground and a swimming pool just around the corner. Foliage at the bottom of the stairs where Sue could plant a garden.

We rented a three-bedroom apartment on the second floor: master for Sue, study/bedroom for me, cubby for Ben. My Mom and

Dad bought us a new washer and dryer set, blessing our reunion.

The dining room table doubled as Ben’s therapy desk, where trainers could sit. Searching the Salvation Army for treasures, I selected a Queen Anne sofa and matching chair recovered in green fleur-delis. I paid from my savings and offered it as a gift to Sue, an open hope chest. She branded the living room with a red fleur-de-lis mismatched chair. Her mark.

 

Aftershocks

PDF

Aftershocks

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 hurtful that I can’t repeat it.”

“Oh, that wasn’t really Sue,” I explained, “That was the White

Bitch.”

“I’m not going back there.”

Sue didn’t see her apartment as a rattrap; she saw it as a treasure box. She’d dubbed herself the Salvage Queen of Dallas. When an old

Highland Park mansion was scheduled for demolition, she’d sneak into the site looking for collectibles, pull up in her red Ford Escort, branded with yellow-and-green sunflowers the size of basketballs painted on the car. Camouflage, she thought, but it stood out like a circus clown car. She packratted chandeliers, fancy light switches, window boxes, exotic plants, carpets, drapes, and once even ten pounds of wild rice, found in the upper reaches of an abandoned pantry. She made art, kinetic sculptures, wind chimes, hanging mobiles, vases, and planters out of these recovered treasures, and she populated her living quarters with them.

 

Over the Rainbow

PDF

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 in my mailbox addressed to “Dan and Ben.”

I poured myself into my work and taught an overload: as many as seventeen sections of communications courses, mostly online. In the evenings, Ben watched TV or read Dr. Seuss books while I e-mailed my students and graded papers, listening to WRR, the Dallas classical station. Tchaikovsky piano concertos, Mozart, or Bach played in the background. About nine thirty, I’d wind up the evening.

“Ben, do you want to go to Lucky’s?”

He’d nod yes, and we were off for bedtime snacks, steamed broccoli, or red beans and rice, at the corner café, floor-to-ceiling windows looking out over pedestrian traffic and the upscale urban landscape.

 

Going Home

PDF

Going Home

In September, Ben and I marched in the 2008 Alan Ross Texas

Freedom Gay Pride Parade with our church, Cathedral of Hope.

Marchers wore red, blue, green, or yellow shirts, rainbow colors, and the church’s theme, A Rainbow People, reminded me of The

Wizard of Oz.

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 of raising a disabled child. Sue, our Tin Man, rusty with grief. Ben, our Scarecrow with a head full of straw. The Yellow Brick Road is an image of the changes taking place in our lives, our journey, the gifts we have received.

Ben is a work in progress. The full force and fury of the autism storm have passed. Like New Orleans after Hurricane Katrina, damage is extensive and repair work is underway.

Standing there in the shade, sipping my melting blue snow cone,

 

Details

Print Book
E-Books
Slices

Format name
PDF
Encrypted
No
Sku
B000000023616
Isbn
9781574412697
File size
1.3 MB
Printing
Allowed
Copying
Allowed
Read aloud
Allowed
Format name
PDF
Encrypted
No
Printing
Allowed
Copying
Allowed
Read aloud
Allowed
Sku
In metadata
Isbn
In metadata
File size
In metadata