by Annette Wood
And walk she did. This active, into-everything child disregarded personal harm. She crawled on top of whatever she could reach, ran into the street, and disappeared when no one was watching her. Then the tantrums started—screaming and throwing herself on the floor when crossed or sometimes for no reason. By the age of eighteen months, she said nothing with meaning. Her conniption fits and contrary ways began to dominate our family life.
One Sunday in church, I watched Mama as she tried to get Jan to cooperate and then watched our neighbor as she dealt with her fifteen-month-old twin boys in the next pew. “Jan’s more trouble than Joan Wilson’s twins,” I whispered.
Jan’s behavior only worsened with time. She ignored the world around her, not answering requests and ignoring orders. She mixed sugar and cigarette ashes on the kitchen table and then danced a jig on top of it, just to make sure it spread everywhere. Sometimes she threw things on the floor, seeming to delight in the sounds they made. It was almost impossible to know what would make her laugh or dance with glee. She disregarded horrified reactions.
We took her to family gatherings, but she showed no interest in being part of the group. Mama or Daddy had to stay with her constantly. Even then, temper tantrums were frequent and unpredictable. Daddy stayed with her while the rest of us attended church.
Much later in the teacher’s lounge when I was teaching, I described some of Jan’s behavior. A self-righteous teacher said, “I wouldn’t have allowed it.”
Sure, I thought, knowing she had one well-behaved daughter. My mother’s first two children behaved well. Mama, shocked by Jan’s antics, didn’t have the knowledge or training to stop them. She had Jan all day, every day, with nobody except Daddy to relieve her. No schooling was available for severe autistics in the 1950s.
There were many things I didn’t understand about my little sister. I recall Jan running into the kitchen, grabbing a spoon, and racing out again to the back steps. Then she tossed it up on the roof of the back porch, dancing and giggling. She did this over and over again, with spoons and spatulas. When too many utensils collected on the roof, Mama sent Bruce, my younger brother, through the tiny bathroom window to retrieve them.
Jan refused to sit with us at meals. For a long time she ate peas, but eventually she would only eat peanut butter and honey sandwiches. My mother mixed vitamins and medication into the peanut butter, then left a peanut butter sandwich and a cup of milk on the corner of the kitchen table. Jan drank a great deal of milk, frequently dumping what she didn’t want on the floor.
She rocked in her shabby rocking chair incessantly. Her recurring tantrums were ear-splitting and lengthy. She flung herself on the floor and kicked her heels for no reason that we could comprehend. Sometimes she knocked her head on the floor or the back of her rocking chair as she rocked. Life with Jan was a blur of activity and unpredictability, overwhelming for us all.
Often Mama called Bruce to calm her. He put his arms around her tightly until she could control herself. “No one was closer to Jan than Bruce,” said Mama.
We were fortunate that the Institute of Logopedics in Wichita, Kansas, a national and international leader in the treatment of speech disorders, was only sixty-five miles from us. The unfortunate part was that Mama had to drive with Jan twice a week to the institute for speech therapy. Each time Mama asked somebody (usually a great-aunt) to accompany them. Mama was terrified of the traffic in the city.
One day when nobody was with them, they got a flat tire. Mama knew she had to change it. It would be minutes, even hours, before someone would come along to help. She got out of the car, telling Jan to stay in the car, and changed the tire. When she returned to the car to get back in, Jan had locked all the doors and was laughing inside. Fortunately, since she had just used the key to unlock the trunk, she had it in her hand. Otherwise, she did not know how she would have solved this dilemma on a lonely road.
Only two weeks later, Dad was driving our family down the road, Jan at his side, rocking contentedly. Suddenly, she reached over, grabbed the key, and tossed it out the open window.
“She threw the key out!” he yelled. He pulled the car over to the side of the road. Mama stayed with Jan. The rest of us searched in the weeds along the roadside. No key. Because of the way the car was made, it could run without a key after it was started. He drove back to the house where a spare key waited. For the rest of his driving days, Daddy carried a spare key in his billfold.
Keeping clothes on Jan required constant vigilance. We lived in the country and visitors arrived infrequently, so most of the time we didn’t bother. When Jan was very young, she bolted out of the house naked and danced on top of the car. Daddy protested. He thought she would make dents in the top of the car. Little did he know what a problem it would become.
As Jan grew older, she kept up her nude dancing on top of our vehicle. Both my parents had many other responsibilities and no help with Jan. Though watching Jan was a high priority, it was impossible to keep track of her every second.
Daddy was on the school board in our small school district. Getting good teachers was a problem. He interviewed potential candidates in the front yard. One time when he was interviewing a prospective teacher, a naked Jan, then about six, burst out of the house without clothes on, climbed on top of our car, and frolicked. We found out what had happened when Daddy roared into the house holding Jan’s hand. I seldom saw him that angry. “Great balls of fire!” he hollered, red-faced with anger. The teacher did not take the job.
I have no idea why Jan danced on top of the car. I do have some thoughts about why she took her clothes off. According to Temple Grandin in Autistic Brain, taking clothes off is a sign of tactile sensitivity. Even today, Temple says: “Clothing drives me crazy if it’s not the right texture.” She cannot stand some cotton T-shirts because they’re too scratchy, even if they’ve been washed.
Some people with autism are famous for breaking glass. Jan broke her share. She stepped through a window pane under which my mother was growing small plants. Blood streamed from her foot. We rushed her to the emergency room where she received over a hundred stitches.
Her milk cup was plastic. We learned not to leave glasses where she could reach them, but at that time milk came in glass gallon jugs. Jan managed to break many of them. She stuck her foot through window panes. Daddy patched them with cardboard until he could get a replacement.
Glass shatters and scatters incredible distances. Tiny pieces could be found across the room. Mama learned that a wet paper towel picks up most of the shards. At the age of sixty, I still shudder at the sound of breaking glass.
When Jan was seven, our baby brother, Lee Robert, was born. I enjoyed him immensely, and felt even diapering was not a chore. When Lee was six months, Jan grabbed a large, sharp-edged shovel in the yard and threw it at him. Fortunately, she missed, but my parents were concerned about the consequences of Lee and Jan living in the same house. They decided Jan had to be institutionalized.
Jan was evaluated at Kansas Neurological Institute. I remember waiting in the lobby with Bruce and Lee for a long time. A tall, skinny man in a brown suit with a notepad watched us intently for a while. Then he disappeared. After waiting for what seemed like an eternity, Mama and Daddy and Jan reappeared. Mama told me later the man who observed us was a psychologist. “He told me anyone who’d been living with Jan should have therapy,” she said.
Mama and Daddy had to break the news to Jan that she was going to be institutionalized. They told her she was going to school.
Inevitably, the day came when she had to leave. “Goin’ to ‘cool, goin’ to ‘cool,” she sang over and over, until she realized it was too far for her to come home at night. Then she reared back her head, hitting Mama in the face. Mama had a black eye for weeks.
A month later, we made the four-hour drive to visit her. When Jan climbed into her accustomed spot between our parents, I hardly recognized her. She was pale, thin, and neatly groomed. Her blonde braids had been chopped off and her
hair clung to her head. We took her to a park where she could swing, but mostly we drove around. She rocked back and forth in the front seat.
When we returned to the cottage, I again held Lee while Mama and Daddy took Jan inside. They were gone a long time. When they came back, Mama opened the car door, climbed in and burst into tears. “They said she’s hardly eaten since she’s been here,” Mama said. “She just sits in her chair and rocks.” Daddy started the car and we began the journey home.
My sister Carol was born on December 11, 1964. Mama took Carol to a photographer for her six-month picture. “Look how much Carol resembles Jan,” she said.
That summer Jan came home from the institution for her regular visit. She behaved abominably, even more than usual. Possibly, she resented this new intruder. On some level, Jan knew she’d been cheated. We continued to visit her at the institution, but she never came home again.
As Jan approached adolescence, she, like one-third of all persons with autism, developed seizures. Hers were violent and frequent. For a while her social worker called regularly to report how many seizures she’d had that week and informed my parents about medication changes. At least once during this period when they took a group to the zoo, Jan went in a wheelchair. I found it hard to picture my formerly fleet little sister confined to a wheelchair.
Jan died in a van accident on a field trip with members of her cottage. She was forty. Her death was as unexpected as her life.
* * *
According to Temple, “The landscape I was born into sixty-five years ago was a very different place from where we are now. We’ve gone from institutionalizing children with severe autism to trying to provide them the most fulfilling lives possible.”4
Born in 1994, Neil Carney is the youngest of five. His siblings, Zach, Kathleen, Martin, and Tim, are all neurotypical. Neil was diagnosed with severe autism at the age of three. His family have been through a great deal. His parents, Aldona and Pat, support each other. Pat was one of eleven children, one of whom was disabled.
Aldona and Pat are proactive in getting services for their child. They speak up because they know that there are many families who can relate to what they are going through. They also know there are vulnerable, nonverbal people who have no one to advocate for them, which they will always do for Neil.
Neil requires round-the-clock, one-on-one care. He is part of a subset of people with autism who are violent. His family desperately needs help. People have no idea what the Carneys go through just to take a family outing.
Aldona and Pat wrote this in a letter to the editor in the Wichita Eagle:
1. Have you ever had a doctor tell you that your child has a lifelong disability with no known cure?
2. Have you ever cleaned up feces that were smeared all over the room or changed a thirteen-year-old’s Pull-Up?
3. Have you ever had to fight off attacks from an adult child while he was in a rage? Or watch, horrified, as he pulls out his own adult tooth?
4. Have you ever had to stop your child from attacking other people while in public? Or had to take turns going to church?
5. Have you ever had to stay up most of the night for many nights in a row because your child doesn’t have a normal sleep cycle, but still be expected to perform at your job?
6. Have you ever had to have poison control on speed dial because your child eats or drinks inedible things?
7. Have you ever had your heart ripped out because you had to leave your child at a state institution so he could be safely detoxed off an antipsychotic drug that was no longer effective?
Neil is a flight risk and he is fascinated with water. Once, the school system lost him for an hour. There was an all-out search, including a helicopter overhead. They found him in a ditch by some water. He was moved to Levy, a school for the severely, multiple handicapped, where the security was much tighter.
Besides severe autism, Neil has been diagnosed with MR (mental retardation), ADHD (attention deficit hyperactivity disorder), OCD (obsessive compulsive disorder), and pica (eats inedible things). He has consumed three baby mattresses. He can’t be exposed to light bulbs because he has attempted to eat them. He has swallowed insulation and charcoal.
He will eat too much of a food he likes. Neil doesn’t have a shut-off valve that stops him from eating. He will eat until he throws up. Now, Neil lives in an extended family teaching home (EFT) where there are locks on all the cabinets.
From the time he was a baby, Neil was different from his siblings. He only slept in a baby swing. He loved the motion. He stopped nursing at four months. All the other kids had nursed for a year.
When he was two, Rainbows (a school for preschool developmentally disabled children) diagnosed him as developmentally delayed. The Carneys took Neil to Valarie Kerschen, MD, a developmental specialist in Wichita, who diagnosed him at three and a half with severe autism and profound retardation.
“I thought it would get easier as he got older,” said Aldona, “but it got progressively harder.” At eight years old, Neil still wasn’t sleeping through the night, so Dr. Kerschen started him on a low dose of Seroquel to help him sleep. It worked for a while, but eventually lost its effectiveness, so Dr. Kerschen upped the dosage. This continued for a number of years.
Besides not sleeping, Neil was very difficult to potty train. He had a habit of smearing feces all over his room. When he was finally potty trained at thirteen, the family had a celebration, but that wasn’t his only issue.
When puberty kicked in, Neil became much more aggressive. Gradually, the Seroquel lost its effectiveness. He ripped apart clothing. He bit his older brother deeply enough to send him to the emergency room.
At seventeen, Neil experienced intense violent rages. He attacked Aldona and other caregivers. Once in a fit of rage, he sank his teeth into the carpet and pulled out his own adult tooth, root and all. His brother, Martin, who stands six-foot-five inches, was able to manhandle Neil.
“I can’t give Neil any more medication. It’s not working anyway. He needs to be removed from the home and detoxed,” said Dr. Kerschen.
Both Aldona and Dr. Kerschen called multiple places to find a psychiatric facility that would take Neil. They heard many no’s. He needed one-on-one round-the-clock supervision. “We just don’t have the manpower to take him,” they heard repeatedly.
Finally, Parsons State Hospital admitted him. He took his glider rocking chair with him to Parsons. He was there for a year. Aldona and Pat visited him often. Neil also rode a bus that brought him to Wichita, where someone in the family picked him up. When he came home, he was totally off the drug, although it probably took two to three years to clear his system.
Neil received a Money Follows Person (MFP) federal grant that helps people transition out of institutional living. To receive the grant, the person has to have lived in an institution or psychiatric residential care facility for at least ninety days. The money can be used for the transition items needed to move and the safety and medical needs of the person moving into the community.
Pat and Aldona bought a HUD home with the help of two of Pat’s brothers and totally remodeled it. They fixed it up specifically for Neil’s needs. A humidifier on the furnace because of his eczema. No exposed light bulbs because of his pica. Shut-off valves on the hot water heater because of his attraction to water. They completed the fence in his backyard because he is a flight risk. This is the EFT house.
Neil has a teacher, Bethany, who lives with him. Neil loves Bethany. She works with him on things like washing his hands and waving good-bye, both of which have taken him years to learn.
Someone is always with Neil. The house has a bedroom for Neil, a bedroom for Bethany, a living area, and a sensory room. There are cameras in the house, monitored constantly by Community Living Opportunities (CLO) in Lawrence, Kansas. If Neil tries to leave the house, someone from CLO calls, alerting Bethany.
Because he is nineteen, he’s still in school at Levy, where he will remain until he turns twenty-one,
when he ages out of the school system.
Neil calls the EFT his “house.” On weekends he goes to his “home,” where he grew up.
“I have the same goal for all my kids,” said Aldona. “I want them to be happy, healthy, and as independent as possible.”
Aldona has given many speeches to the legislature advocating for those with autism. “She’s always giving a speech somewhere,” said her son Tim.
Because Neil’s behavior deteriorates when he has tooth problems, Aldona advocated for dental care for persons with developmental disabilities. ”Now there are some dentists in Wichita who will take persons with special needs,” she said.
Aldona was a physical education teacher for many years. “I always did a unit on autism during April, autism awareness month. Many parents called and said thank you for informing us.
“Autism is a huge spectrum. Some kids are very noisy with lots of body-rocking and hand-flapping. Education is the key. It’s tolerated so much better now.”
“Would I change Neil?” asked Aldona. “Yes, I would change the autism. The stress is huge and constant. There’s always something. You have to have a sense of humor.
“Some people say, ‘God won’t give you any more than you can handle.’ I’m with Mother Teresa, who said, ‘I just wish he didn’t trust me so much.’”
PART III
ANIMALS FOR FOOD
CHAPTER 14
CREEKSTONE FARMS: THE MODEL SLAUGHTERHOUSE
I was going to visit Creekstone Farms Premium Beef Packing Plant in Arkansas City, Kansas, primarily because Temple Grandin had designed the facility. I had an interview with Jim Rogers, director of marketing.
“You’re going to get to see Creekstone,” Temple said. “It’s a beautiful facility.”
I enjoyed the drive—tall sunflowers with large golden heads crowded many of the ditches. I passed a pecan grove, small towns I knew by name only, and stands hawking homegrown produce. I saw some green crops, but also many fields full of weeds or brown corn stalks, dried up from lack of rain.