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Never Say Uncle

Mother Determined To Do Best For Autistic Child As He Hits Teen Years

Part 1 of 2

Part 2: 'Mother of Autistic Child...'

Article Reprinted from The Morning News Local News for Northwest Arkansas

This article was published on Saturday, October 7, 2006 9:59 PM CDT in News

By Bettina Lehovec

Editor's Note -- Morning News reporter Bettina Lehovec spent eight months getting to know Amy Burris and her son, Steven. She met with them in their home, attended therapy sessions, watched at school and talked with people who know Steven.

The result is the story of one mother's struggle to come to terms with the future as her autistic child grows.

The story concludes Monday in The Morning News.


FAYETTEVILLE -- Amy Burris sits across the desk from the executive director of the King's Daughters' School Center for Autism in Columbia, Tenn., trying to make sense of the words.

"We don't do fund-raisers here," the woman says with distaste, as if Amy had suggested nude bowling or a wet T-shirt contest. "We accept two sources of income at most."

"Oh, I'll take care of the fund-raising," Amy protests, but the gray-haired matron cuts her off.

"Miss Burris, let me try to explain this to you." The carefully modulated tones of culture shape her voice. Her manicured hands sport an array of gemstones. She wears tailored slacks, a long-sleeved Oxford blouse and a royal purple sweater tied at her breast.

Amy wears a knee-length flowered skirt, a sleeveless blue shirt and sparkly sandals from Old Navy. Her long brown hair is twisted into a bun. She had looked at herself approvingly in the motel room mirror that morning.

"Don't I look motherly?" she had thought with pride.

Now the administrator is stripping that pride away.

"The parents here at the King's Daughters' School Center for Autism, well, they're very committed parents who prepared financially to have children, Miss Burris. They're architects, whose wives are physicians." She tightens the purple sweater with each phrase. "They're certainly not students."

Amy is a graduate student at the University of Arkansas. She's spent her rent money to get to Columbia, with the fevered hope of enrolling her autistic son for even a few months.

"A child with autism has ongoing needs," the executive director explains later. "Some of our children are here for years. A few months' work does not necessarily make a difference."

Charlotte Battles is being truthful, but the words cut Amy's heart like a knife. She tries to align them with the reality of her life -- married at 19, pregnant at 20, a stay-at-home mom thrown into the world of autism advocacy at 24.

The questions come. How do you prepare for an autistic child? How do you deal with the fear that clutches your heart like a fist when you begin to realize something is wrong? How do you accept the chilling diagnosis, the realization that your child has just become a statistic, one of 1.5 million children in the United States with the disorder? How do you plan to parent a child with a complex developmental disability that impacts every area of his life, particularly communication and social interaction?

How do you cope?

Now 34 -- her beloved Steven now 13 -- Amy is reaching out to the private school for help. She's done everything she can on her own. She's worked with Steven for 10 years, ferreting out the latest training techniques. She's pursued each new lead ferociously, confident that this time she'll set Steven free. She's sent him to a series of public schools, fighting to get his needs met in each one.

But adolescence has hit and Steven is still severely autistic. He masturbates three times a day, with none of the social restraints other boys his age understand. Amy's 11-year-old daughter has witnessed the inappropriate behavior. She resents her big brother for the havoc he wreaks in their lives. Amy worries that she's had to grow up too fast. Amy's marriage ended because of stress over Steven, and a subsequent romance ended the same way.

Amy's always sworn she'll never put Steven in an institution, but she's begun to wonder if she can care for him herself. At 5-foot-8 and 140 pounds, Steven is a big boy. He's strong as a linebacker and fast as a hare. His disposition is sweet, his energy level high. He's pacing or moving or into something every waking hour.

Doctors say he has the cognitive level of a 2 1/2-year-old. Like a toddler, he needs 24-hour supervision. Unlike a toddler, chances are he always will.

Hope For the Future

Amy's interview at the prestigious King's Daughters' School in June had started well enough. The trip from Fayetteville had been rife with signs -- portents of an auspicious beginning.

There was the rainbow that lit the sky near her parents' home in Greenwood, south of Fort Smith, where she'd left the children for a few days. There was the 18-wheeler she and friend Andrea Hanson got stuck behind in traffic -- "Stevens Transport" emblazoned on its back. There were the $2 lottery tickets she and Andrea, a speech pathologist in Bentonville, kept winning as they drove through Tennessee. They racked up $38 in winnings by the end of the day, enough for dinner and a drink at an Applebee's in Columbia. There was the name of the motel they stayed in -- the Jamison, Amy's maiden name.

The women ended their day at a roadside carnival, riding a Tilt-A-Whirl in the rain. Soaked to the skin, hair plastered against their faces, they screamed with laughter. Their exuberance touched the sky. They seemed near the end of a difficult journey -- a journey that had begun months before as Amy came to the heart-wrenching decision to seek outside help for her son.

The special education programs in public schools had seemed adequate during Steven's primary years. Once he entered middle school, that changed. Amy felt that the public education system had given up on her son, relegating him to day care rather than trying to teach him new skills.

Debra Wilson, director of special services for the Fayetteville School District, disagrees. Wilson can't comment on any particular child, but she shared general observations.

All children are expected to make academic headway under the No Child Left Behind Act of 2001, Wilson said. The educational goals for an autistic child might include increasing communication, behavior intervention and social skills-building. Functional activities such as doing laundry -- the type of activity Amy sees as rote -- teach needed living skills while increasing communication and compliance with an authority figure.

Steven attended Fayetteville schools from 2003 to 2005. A move placed the family in the Springdale School District last fall.

The specialists who had originally diagnosed Steven's autism had foretold eventual institutionalization. The boy is so severely affected, he'll never be able to function in society, they had said. Yet Amy sees the situation differently. She sees the human being in her son.

She's not ready to give up on the hopes and dreams that have sustained her for 13 long years. With the right training, Steven will blossom, she believes. He'll learn the skills he needs to navigate the world around him. He might never be completely self-sufficient, but he'll have a life -- something beyond being locked in a padded room in an institution. That's the grim scenario Amy carries in her mind about life in one of Arkansas' public institutions, although she's never visited one.

A creative writing teacher years ago had warned Amy of such institutions, in which he had worked, and begged her never to let Steven enter one.

But her alternatives are dwindling.

"Puberty's hitting hard. I don't know what to do all the time anymore," she'd confessed to a friend last spring. "I don't want Steven not to live with me. It breaks my heart to think about it. (But) public schools can't serve him. He needs (specialized) education, training. I know it will make a difference. I don't know to what degree. That's what I want to find out. I just have to know if Steven has a chance."

A private school will give him the concentrated attention he needs to improve, she believes.

'My Dream, Dream School'

Amy had visited the Heart Springs School in Wichita, Kan., last winter, encouraged by the school's expertise in autistic education. Yet the price tag -- $21,000 a month for a child with Steven's extreme needs -- had stopped her in her tracks.

A legal procedure called a due process hearing can force a public school district to pick up some of that cost. If the district isn't providing the special education mandated under the Individuals with Disabilities Education Improvement Act of 2004, it can be held responsible for providing those services at a private school.

Yet proving that a school district isn't meeting a student's needs is an arduous process. Wayne Foster, a special education supervisor for the Springdale School District, put it this way: "We are required to provide a free, appropriate public education for a student with disabilities. We are not required to provide a Cadillac version of (those services)."

An Individualized Educational Program plan -- IEP for short -- spells out the goals for each student. Every IEP is different, tailored to meet individual strengths and weaknesses.

The plan is revised annually by a team that includes the parent or guardian, special ed teacher, regular classroom teacher (if that applies), special service providers such as speech or occupational therapists, a building administrator and a special ed supervisor such as Foster.

Foster is proud of the services his school district offers. Ongoing training for teachers strives to keep them up-to-date. A public school district spends more than $15,000 on a child with severe disabilities, he said. About 10 percent of students in the school district receive special education services of some kind.

Private schools for autism don't exist in Arkansas.

Amy believes it's unethical to play the due process hearing card. She doesn't want to ask the school district to spend many thousands of extra dollars on just one child. So she's hatched the idea of raising Steven's tuition herself, cobbling together the $9,000 monthly fee at the King's Daughters' School from fund-raisers, donations and her own modest income.

She can't contribute much. A graduate student in the University of Arkansas speech language pathology program, she relies on student loans, child support and Steven's disability payments to finance her family's needs. In the evenings, she teaches piano and clarinet lessons in her home to supplement her income. The Medicaid waiver program pays for child care and some therapy equipment.

The waiver program is a state program that disburses federal funds to help disabled individuals receive special services in the community. It costs far less to support a person through the waiver program than to pay for institutionalization. Keith Vire, executive director of the Arkansas Support Network, says a low estimate for institutional care is $85,000 a year. Waiver payments vary, since each is based on an individual contract, but the maximum amount allotted is $58,400 a year.

Steven is one of 3,000 Arkansans who receive the waiver. There are more than 1,000 on a waiting list. The waiver cannot be used to finance private education such as the King's Daughters' School.

Amy arrives at the school with $30,000 in the bank. The money is a gift from a relative who has asked to remain anonymous. Amy hopes to use the money for a down payment or to cover tuition for several months.

"Silly me, I thought that was a significant amount of money," she says later. She has very little in reserve. But she has faith. Her ex-husband's wife has pledged her Avon sales profit to help with tuition. A friend at the Fort Smith Art Center, where Amy used to volunteer, is planning a fund-raising concert in the fall.

The rest will come, Amy is sure. Her belief in Steven is so strong, her hope for him so huge, that she's certain the rest of the world will respond.

"I fell in love with him the first time I felt him kick," she says. "When I held him in my arms and looked into his eyes, I knew I would do anything for him."

The director of development at the King's Daughters' School Center for Autism had greeted Amy and Andrea cordially. She had shown them around the school, fanning the flames of Amy's hope for Steven with every step.

"It was everything I wanted for him," Amy says later. "It was my dream, dream school." Her eyes are bright as she hears about the small number of students, the high teacher-to-student ratio and the streamlined learning plans. She already sees Steven using the visual schedules posted on the walls and bouncing on the bright-colored therapy balls.

"Steven would really like this," she says to Andrea, who is equally impressed.

But the fire dies in the executive director's office. Battles breaks the bad news bluntly. The school won't consider Steven without a year's tuition paid in full.

Amy cries, begging Battles to change her mind. Battles holds firm. She'd be doing Amy a disfavor by encouraging her unrealistic dreams, she says later.

"It's an expensive proposition to have a child at a boarding school, particularly a child with severe behaviors and needs," she will say. "It's almost impossible for working-class families unless they have some help from a school district or other entity."

Amy and Andrea leave the school, driving a short distance before Amy pulls over and bursts into tears. Andrea takes the wheel. Amy sobs all the way to Memphis, where the women stay overnight with a friend.

"I put on a brave face for everybody, but I have been really petrified about what's coming up for Steven," she confides. It looks to her as if her fears will come true.

Coming Monday -- Amy revisits the early years of Steven's struggle with autism and finds a sense of acceptance about his future.

What is autism?

Autism is a brain disorder that often interferes with a person's ability to communicate with and relate to others. The disorder, which is more common in boys, covers a wide range of behaviors and abilities. No two people with autism will have the same symptoms. Some need round-the-clock care, while others are able to function at a high level and can attend school in a regular classroom.

Autism is more common than childhood cancer, cerebral palsy, hearing loss and vision impairment.

The rate of autism has increased in recent years, and while there are many theories why, no one knows for sure. It could be that diagnostic methods, diagnostic categorization, and improved identification of individuals with autism account for the increase.

Common problems and behaviors:

Social skills: People with autism might not interact with others the way most people do, or they might not be interested in other people at all. People with autism might not make eye contact and might just want to be alone. They might have trouble understanding other people's feelings or talking about their own feelings. Children with autism might not like to be held or cuddled, or might cuddle only when they want to. Some people with autism might not seem to notice when other people try to talk to them. Others might be very interested in people, but not know how to talk, play, or relate to them.

Speech, language, and communication: About 40 percent of children with autism do not talk at all. Others have echolalia, which is when they repeat back something that was said to them. People with autism might not understand gestures such as waving goodbye. People with autism might stand too close to the people they are talking to, or might stick with one topic of conversation for too long. Some people with autism can speak well and know a lot of words, but have a hard time listening to what other people say.

Repeated behaviors and routines: People with autism might repeat actions over and over again. They might have trouble if family routines change.

By the numbers

5.7

Number of people in 1,000 with autism in the United States.

24,000

Approximate number of children born each year in the United States who will eventually be diagnosed with autism.

500,000

Estimated number of people 21 years old and younger who have autism.

141,022

Approximate number of children served under the autism classification for special education programs.

Source: Centers for Disease Control and Prevention

Web Watch

Autism Society of America

http://www.autism-society.org/site/PageServer

Center for the Study of Autism

http://www.autism.org/

Centers for Disease Control and Prevention

http://www.cdc.gov/

http://www.nwaonline.net

Part 2: 'Mother of Autistic Child...