ROANOKE TIMES
Copyright (c) 1997, Roanoke Times
DATE: Tuesday, January 28, 1997 TAG: 9701280102
SECTION: EXTRA PAGE: 1 EDITION: METRO
SOURCE: SANDRA BROWN KELLY STAFF WRITER
MEMO: ***CORRECTION***
Published correction ran on January 29, 1997
The amount of school instructions that Caleb Lambert receives from
Roanoke County was incorrectly reported in Tuesday's Extra section.
Caleb is receiving 4 1/2 hours of instruction per day for five days a
week.
"Pull back lips. Stick out tongue," Demaree Peck tells her 5-year-old son, Caleb.
He follows her directions and is rewarded with a hug, a whirl in her arms and a, "Wheeee! Great, Caleb!"
Peck has an undergraduate degree from Princeton University, and a doctorate in English from the University of Virginia. But she's no longer in the classroom lecturing on authors like Willa Cather, the subject of her dissertation.
Peck is spending nearly every waking moment trying to save Caleb from the dark world of autism, using a technique called Applied Behavior Analysis that requires at least 40 hours of drills each week.
Caleb, the oldest child of Peck and her husband, Ken Lambert, was diagnosed as autistic at age 2 after Peck's mother noticed her grandson wasn't developing language or playing with toys as expected for a child of his age.
Autism, which is more common in boys, is generally characterized by a lack of responsiveness and severe language impairment. The disorder is associated with extreme inattention and self-stimulating behavior such as hand-waving and rocking. Depending upon the criteria used for diagnosis, autism occurs in 5 to 15 per 10,000 births.
Its causes are not well known although it has been found in children whose mothers had rubella during pregnancy and in children who had severe infections in early infancy. Neither explains Caleb's condition.
In the past, a diagnosis of autism was like a life sentence for a family and the child and often came with the recommendation that the child be institutionalized.
At first, it was that way with Caleb.
When the doctor told Peck and Lambert the diagnosis, he didn't suggest any options for treatment, Peck said.
Instead, he handed her a box of Kleenex.
"It filled me with such a sense of despair," she recalled recently as she took a break from Caleb's drills to sit on the floor in the basement classroom of their home and nurse her youngest daughter, Savannah.
Nearby, daughter Catherine, 3, played with Caleb.
"I feel like I'm casting nets to keep this brood together," Peck said. But she says it with a smile even though she admits it has been difficult to manage all three children while devoting so much energy to one.
It takes her as much as two hours each night to update the notebooks that document Caleb's progress, or lack of it.
Saving Caleb has drawn upon all of Peck's skills as a mother and teacher. It has strained the family budget so that it hovers just above bankruptcy.
The couple have charged $40,000 on credit cards to pay for the program participation, materials and instructors needed to fill out the hours of exercises not supplied by the schools. Baby sitters also are needed to free her to run the household and care for the other children.
Since Christmas, the family has sought help from Consumer Credit Counseling to set up a budget for their $45,000 annual income. Lambert is a teacher and textbook writer. Food expenses have been cut to $400 a month, $100 less than the family had been spending, Peck said.
The new budget has less room, too, for the materials and toys she uses to stimulate Caleb's learning. For example, a pirate ship with a catapult that shoots barrels and has sailors that can be placed in the crow's nest or on the sails teaches Caleb motor skills. Pirates and ships have no meaning for him yet.
When she can, Peck uses available materials and real circumstances to teach Caleb. Popping plastic bubble packaging gives his small hands a workout. The word "sandwich" takes on more meaning if they make one and he peels the banana for it.
Peck also makes many of the drill cards by cutting and pasting pictures and stenciling words. Recently, she created a paper computer keyboard to begin teaching Caleb letters and prepare him to use a computer.
Because Caleb doesn't speak - which because of his age likely means he never will, Peck said - the family hopes that a computer will give him a way to communicate.
Tests have established that Caleb learns by seeing, Peck said. Typically, the autistic children who have fully recovered have become auditory learners and can talk.
Still, Caleb's progress has been tremendous, she said.
He's learned how to select a reward by choosing a picture: A picture of a peanut gets him a real one to nibble.
Show him the card containing the word "door" and pronounce it for him, and he goes to the door.
He especially likes to go up and down stairs and grins when that word is offered as part of a drill.
"Trampoline" is another favorite. He gets to jump on a trampoline once he has acknowledged the word.
Peck wishes she understood why certain words attract her son immediately while others don't.
She and the other teachers who work with Caleb spent six months getting him to identify the colors red and blue.
"Then he got orange and purple in one day," Peck said.
In mid-September, Caleb could match 184 words. He now knows more than 200.
Applied Behavior Analysis, formerly known as the Lovaas Method, was developed in the early 1970s by Dr. O. Ivor Lovaas of the University of California at Los Angeles. It is thought to be effective in the child's early years, before age 6.
During the first year of the program, a child is discouraged from self-destructive and violent behavior like when Caleb would stay up at night and wreck his room.
In the second year, the focus is on the child learning to talk and play with other children. Next, comes teaching of appropriate emotions and reading, writing and arithmetic.
The Lovaas program as originally designed was a 16-hour-a-day regimen that constantly reinforced good behavior and discouraged inappropriate behavior. Rewards could be food or a moment with a special toy or a parent's hug. The hug was greatly encouraged because autistic children often have difficulty relating to their parents.
The program required 40 hours of instruction per week.
Working with an autistic child is a lot like pushing a boulder up an incline; there can be no letup because the loss is too great.
From Thanksgiving through the New Year, when drills were less frequent, Caleb lost 35 words, including Big Bird, building, climbing, muffin, jelly beans and lollipops.
He again recognizes most of them, but not muffin, Peck said.
* * *
Peck and Lambert met and married while both were professors at Washington and Lee University in Lexington where he still teaches computer science. Soon after Caleb was diagnosed, Peck took a leave from teaching and enrolled Caleb in the behavior program for autistic children run by The Bancroft School in Haddonfield, N.J.
Peck took Caleb and Catherine and moved to her parents' home in Rochester, N.Y., where the grandparents took care of Catherine and freed her to work with Caleb.
From February to June that year, Caleb made more than a year's progress in development, she said.
To reunite the family and still get Caleb special help, Peck and Lambert then decided to move from Lexington to Roanoke banking on the city's school system being better able to meet their son's educational needs.
Schools are mandated to give disabled students a minimum of six hours of instruction daily. Currently, the school system pays for a teacher to spend four 12-hour days with Caleb.
Caleb is eligible for inclusion in the regional school Roanoke County operates for children like him, but the Lovaas program stresses that autistic children need to be with normal children and not with other autistic children because they tend to imitate behavior.
Roanoke city currently provides services to 22 autistic children, said Bob Sieff, director of special services for Roanoke City Schools. He classified Caleb Lambert as "a one of a kind situation" because of the family's request that one-on-one instruction be provided.
Sieff said the city will spend about $15,000 in the 1996-1997 school year paying for tutors for Caleb. Selff also pointed out that the bulk of the costs for educating disabled children comes, not from the federal government, but from local systems.
Roanoke's $960,000 federal grant is not more than 25 percent of the cost, he said.
Reacting to Sieff's comments, Peck pointed out that without intervention, 90 percent of autistic children are institutionalized.
"Money invested now will save taxpayers hundreds of thousands of dollars later in institutional costs," she said.
When the school system did not meet her expectations for Caleb, Peck hired her own instructors to assure Caleb got the time the behavior program requires.
She regularly posts "Help Wanted" listings at Hollins and Roanoke colleges.
"It takes a lot of youthful vitality to work with him," she said.
Sometimes, students work with Caleb for college credit only, which saves the family money.
Because of his teaching and writing commitments, Lambert doesn't spend much time working in the therapy efforts, but he is teaching his son to have fun, Peck said. They play basketball and go swimming together.
To further broaden Caleb's experiences, the family is paying to send Caleb to preschool twice a week so he can be around normal children, Peck said.
The family also has gained support for the therapy program from their church.
This fall, Mary Lea Hartman, director of education at the church, Raleigh Court Presbyterian, organized a team to work with Caleb one-on-one each Sunday during church service. Kyle Oost, a student at Patrick Henry High School, has volunteered to play with Caleb each Wednesday night at the church while Peck attends choir rehearsal. Church member Jean Smith volunteered to come to the Lambert house each Monday afternoon to play with the girls so that Peck can work with Caleb.
"It is indeed true that it takes a village to raise a child," Peck said. "I am grateful."
However, Peck does not have the same feelings for Roanoke City Schools. She said she senses resentment toward her because she wants to be involved in Caleb's education.
"I know best what he needs and how he needs to be taught," she said. "I've found it difficult to get into the process."
Peck and Lambert have started the process to sue the city asking that Caleb be given a therapist for 40 hours a week and that they be reimbursed for the money they have spent on his education.
In the meantime, Peck organized a parents' advocacy group, RACE, Recovering Autistic Children Early for Tomorrow. Currently, members include two other Western Virginia families who are using the Lovaas program with their children.
In a recent letter to the newly funded Autism Training and Family Support Program, based in Richmond, Peck outlined the parents' hopes that area colleges would establish a regional joint-training program for therapists who could serve the children. Virginia Tech and Radford University recently got a Virginia Department of Education Grant to fund the Training and Technical Assistance Center for children and young adults with disabilities. This might be a logical site for training therapists and for a model classroom for autistic children, Peck wrote.
Despite her commitment to her son, Peck managed to complete a book based on her dissertation, "The Imaginative Claims of the Artist in Willa Cather's Fiction." It recently was published, and she has been invited to give the keynote address at the 1998 Willa Cather Conference.
She also sings in the choir at Raleigh Court Presbyterian Church.
And, in a new twist to her circumstances, she has been hired by the special education department for Craig County to help teachers work with an autistic child.
Peck has begun to think about writing a book about Caleb. "My Life Raising an Exceptional Child," she said. "A lot of people have a stereotype of an autistic child. I want to represent him not as a label but as my son."
She carries a tape recorder in the car to put down her thoughts and to use as a sounding board. It's cathartic, she said.
"Every small step he makes is a great achievement. He's already learned more than I anticipated him learning. But you keep setting expectations higher. I'm heartened by his progress but anxious about his future," Peck said.
"I have to be realistic. Here's a child who doesn't have language. We all attach so much to language it almost becomes characteristic of being human what separates us from animals," she said. "Is my son human without language?"
LENGTH: Long : 239 lines ILLUSTRATION: PHOTO: ALAN SPEARMAN STAFF. 1. Caleb (left) enjoys the freedomby CNBof an outdoor outing with his family. 2. Cory Batts of Salem, one of
three therapists, works with Caleb on identifying objects. 3. Caleb
often plays by himself in his room. Here he satisfies his need for
tactile stimulation by flipping through a book. 4. The Applied
Behavior Analysis treatment calls for 40 hours of therapy a week.
Cathrine Jolly, one of Caleb's therapists, helps him practice
coordination (left) by shooting baskets. His mother, Demaree, helps
with a stimulation exercise (above) by letting him stomp on the
lawn. 5. Dinner at the Lambert's is a busy time. While dad, Ken,
cuts Catherine's food, mom, Damaree, works with Caleb by using a
poster board to help him recognize different types of food. 6. ERIC
BRADY STAFF. Sally Gravely, a volunteer at Raleigh Court
Presbyterian Church, gets Caleb to pat himself on the head as she
sings "If You're Happy and You Know It." color." KEYWORDS: PROFILE