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Experiences with Autism

Mother of Autistic Child Decides His Happiness Might Be Enough

Part 2 of 2

Part 1: 'Never Say Uncle'

Article Reprinted from The Morning News
Local News for Northwest Arkansas

This article was published on Sunday, October 8, 2006 9:47 PM CDT in News By Bettina Lehovec

Editor's Note: The Morning News' Bettina Lehovec spent eight months getting to know Amy Burris and her son. 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.

Sunday's first installment in the two-part series looked at Burris' efforts to place Steven in a private school.

FAYETTEVILLE -- Steven Burris paces across the classroom, nearly bumping the cinderblock wall before he turns and strides the other way.

He talks to himself in a high-pitched voice, the words unintelligible and excited.

"Hi-i-hi-i-hi-i-hi-i-i," he intones. His hands are clenched by his mouth, sides pressed together and fingers wriggling. He giggles suddenly, a brief burst of humor that subsides as quickly as it began. Twin bruises on the backs of his arms show where he bites himself, another form of tension release.

The eighth-grade student at Southwest Junior High School in Springdale is autistic. He is one of 54 children in the school district classified with autism as their primary disability. The brain disorder interferes with a person's ability to communicate with and relate to others. The Centers for Disease Control in Atlanta says the rate of people with autism in the United States could be as high as 1 in 166.

Steven's mother, Amy Jamison Burris, has spent much of the past year trying to find a specialized boarding school for her son. Adolescence has brought changes she's not sure how to deal with. The single mother has a younger daughter, Lacey, who needs her attention, too. A graduate student in the University of Arkansas speech language pathology program, Amy often feels stretched thin.

And she's gripped by increasing fear about the future. Steven needs 24-hour-a-day care. Who will provide that after Amy is gone? She's tried every way she knows to reach him, to break him out of his autistic world. Maybe a specialized school can accomplish what she has not.

But the private schools she's visited are beyond her financial means. There's no guarantee they could help Steven anyway. It's begun to sink in that there may not be a perfect ending. Maybe life with autism is all there is.

Searching For A Diagnosis

Steven developed normally for his first 16 months. The curly haired baby laughed often, engaged in imaginary play and said simple words like "papa" and "nama."

Then he had his first measles, mumps and rubella vaccination, or MMR. He vomited for the next 24 hours, emptying whatever was put in his stomach with the intensity of a rifle shot. His fever spiked to 105 degrees, a high it would return to repeatedly throughout the next week. He ceased eye contact and began having violent tantrums, behavior that intensified during the next several months. He lost the language he had begun acquiring, stopped all imaginary play and developed chronic bowel problems.

"He was just a different baby," Amy recalled. "He couldn't communicate any want." High-pitched screaming filled the house almost around the clock. Later, he would butt his head against the wall and rub his feet together so hard the bones were exposed.

Amy believes the MMR shot triggered Steven's autism. A number of parents and medical professionals think there's a causal relationship between the vaccinations and the disorder. Although the prestigious Institute of Medicine concluded in 2004 there's no evidence of a link, the controversy continues. Drug makers wary of liability have phased thimerosal -- the mercury-based preservative blamed for the onset of autism -- out of most vaccinations. The cause of autism remains unknown.

The worried mother sought help from several pediatricians over the next 18 months. The doctors minimized her fears. Steven was just hyperactive, one doctor told her. He needed to be disciplined. Then he diagnosed deafness. Like many children with autism, Steven made little eye contact and didn't follow directions.

Amy laughs now at the mental image of her dutiful attempts to communicate via sign language. Then she opened a bag of candy and saw the toddler turn at the sound.

A friend mentioned Steven's symptoms paralleled those of her niece, who had been diagnosed with autism. Amy went to the Fort Smith library (the family lived in the Fort Smith area until 2003) and checked out the only two books on the topic they had. Seeing Steven's symptoms mirrored within was a relief to the young mother. She was 21 when Steven was born. Now she had a direction to explore. She began the task of educating herself about an illness with myriad complications, multiple and conflicting treatment theories and no known cure.

The pediatricians she consulted continued to downplay her fears. Steven lacked two of the symptoms often associated with the disorder -- repetitious speech patterns and lack of affection. The toddler was very affectionate, crawling into his mother's lap for hugs and kisses.

Yet he had 12 of the 14 symptoms Amy had seen listed for autism. She asked for a referral to a neurologist, but it was denied. The mother decided to take calculated action. She took Steven to a walk-in clinic she hadn't visited before, with Lacey in a baby seat beside her. Again she requested a referral. When it was denied, the 5-foot-3-inch woman plunked herself down on the exam table, wrapped her legs around Steven and refused to leave.

"You'll have to drag me out," she announced. "I'm going to sit here for as long as it takes." Her insurance company required a physician's referral for full coverage.

She got her referral. The neurologist identified Steven as autistic, but sent him to Arkansas Children's Hospital for diagnostic tests. On March 21, 1996, Steven was diagnosed with severe to profound autism. That's the far end of a spectrum that ranges from mild to profound.

The boy had turned 3 a few days before. Nearly two years had passed since his behavior first changed.

Advocating For Steven's Best

The struggle to get Steven diagnosed was just the beginning of the challenges life with autism would bring. Amy couldn't let the child out of her sight, because he'd eat whatever he got his hands on.

One of the rare date nights she shared with her husband, Matt, ended in disaster when Steven swallowed a pointed screw. Steven has ingested ink pens, crayons, cigarettes, toilet bowl cleaner, contact lenses and much, much more. The emergency room crew in Fort Smith got to know him by sight.

Lacey spent much of her early years in the child seat, because Amy simply couldn't chase two children. A series of agencies recommended techniques to try and reach Steven in his closed-in world. Their advice often seemed impractical.

"What do I do when I'm in the check-out line at Wal-Mart and he's throwing a fit?" Amy asked. Whip out a color-coded place mat and set him on it for time out, she was told. She also was given a big plastic picture board and told to have Steven point to what he wanted. The preschooler couldn't point.

A physician prescribed drugs for the boy, but Amy soon discontinued them. She wanted a cure, not a Band-Aid approach. The doctors who had diagnosed Steven's autism had told her he would probably end up in an institution. It was news Amy refused to accept.

Through the mothers of other autistic children, Amy began to learn about treatment options. There is the Picture Exchange Communication System, or PECS, which uses a board with Velcro pictures to help children communicate their needs. Applied Behavioral Analysis, or ABA, strives to modify a child's behavior through structured intervention. Sensory Integration Therapy uses therapy balls, swings and other play equipment to meet kinesthetic needs. Speech, occupational and physical therapy address other needs.

There is no cure for autism, but it can be minimized. Early intervention is key. Higher-functioning autistics can live fairly normal lives. They might always struggle with tendencies such as an aversion to touch or difficulty forming thoughts into words.

Steven, with his severe symptoms, made some headway, but progress was often heart-breakingly slow.

A nine-month parent advocacy training through the Governor's Developmental Disabilities Council in Little Rock taught Amy she had the right to ask for what she believed was best. She's taken that philosophy into her dealings with doctors, the Medicaid system and public schools. She fought to have ABA and PECS included in Steven's curriculum before they were widely accepted in Arkansas. The techniques are now commonly used.

Advocating for Steven changed Amy. The lively young girl who thought she had the world by the tail became a passionate woman with hard-earned strengths. Her mother, Brenda Jamison, recalled the years of struggle.

"Time and time again, she'd call and say she just couldn't do any more. But she always came back stronger."

The constant turmoil took its toll on the relationship between Amy and Matt. The teenage sweethearts divorced in 2001, when Steven was 8 and Lacey was 6. Matt Burris has since remarried. He lives in Fort Smith with his wife, Nikki. The children stay with them every other weekend.

Amy chooses her words carefully when talking about the children's father.

"He couldn't fix it and I think that drove him crazy ... It wasn't even human to live like we were living. Talk about the stress it causes between husband and wife." She later learned that 80 percent of marriages between parents of autistic children end in divorce.

Steven suffered a major setback that fall. He had a grand mal seizure in his sleep. Until that point, he'd made some progress with educational goals, learning some simple math. He could speak about 150 words. After the seizure, he lost everything, even his toilet training skills.

"We started from scratch at age 8," Amy recalled. Steven regained control of his bladder and bowels at 10, but remains severely limited in many areas.

He can speak a handful of words, among them "I want" and "yes." He can spell his name with letter tiles, do simple puzzles and communicate some desires via a pocket computer. How much he understands is anyone's guess.

The youth has the cognitive ability of a 2 1/2-year-old. His attention span is five minutes. He understands contextual language, such as "put your clothes on" or "shut the door." He makes his bed, empties the dishwasher and takes out the trash, all with a taskmaster guiding the way. In-home aides help Amy with child care. They are paid through the Medicaid waiver program, a state program that disburses federal funds to help disabled individuals receive special services in the community.

Steven loves music, riding in the car, swinging and spinning objects on a stick. He's learned to limit masturbation to his own room at bedtime. His budding physical needs had presented a problem a few months before.

He seems sensitive to other people's feelings, responding tenderly when Amy or her mother is in tears. Brenda Jamison calls him her baby. He sleeps between her and Chuck Jamison when he visits.

At 5-foot-8 and 140 pounds, Steven is a handsome young man. He doesn't understand his own strength or why people might not want to be caught in a bear hug around the neck. He grabs hair sometimes when frustrated. His parents, teachers and aides agree: Steven would never intentionally hurt anyone.

Still, his strength gives Amy pause.

"I wonder sometimes if he'll break my neck."

Focus On Happiness

Steven finishes his cupcake and grabs for another.

"No," says Dotti Newberry, special education teacher at Southwest. "If you want another cupcake, tell me. 'More ... '" She rounds her lips to model the sound.

"Ohr," Steven exhales. Newberry works with him until he manages "mohr." She gives him the cupcake. He eats it and looks at the teacher expectantly.

"I ... want," he states laboriously. Newberry gives him face-to-face attention. Autistic children often respond better if they can match their language to visual cues.

"I ... " Steven says again.

"I ... " Newberry echoes.

"Want ... "

"Want ... "

"Cupcake!"

The other children and classroom aides break into applause. They know what a momentous thing they've witnessed. The boy with very limited ability to translate his thoughts into words has done it -- asked for something clearly.

It's moments like these that keep Amy going. She exults over Newberry's e-mail message detailing the scene.

"That's awesome!" Amy writes in her e-mail response.

The school year has gotten off to a good start. Amy is happier with the situation than she has been in years. Newberry seems to really care about her son. Steven is eager to go to school in the mornings. That hasn't always been the case.

Newberry and a teacher's aide work with Steven to lengthen his attention span, teach him classroom rules and learn simple skills. He's settled down since the school year began, thriving on the structured environment Newberry provides. Aide Anita Crosby takes him on frequent walks, trying to meet his need for movement before it becomes disruptive.

"The goal for Steven right now is that he would communicate what's inside him," Newberry says. His pocket computer is programmed with pictures of the foods and activities he enjoys. He presses the pictures to convey his needs.

Amy has adjusted her expectations since the disastrous interview at King's Daughters' School Center for Autism in June. She was told then she couldn't afford a boarding school for her son. The blunt words hurt her, but she says now they might have been a blessing.

"I think it's time to be realistic. Life skills are more important (than academic success). He's learning to convey his needs in a public setting ... I'm going to focus on happiness versus a developmental checklist."

But the woman whose e-mail address is neversayuncle hasn't stopped trying new things. She's flying to Massachusetts in December for a parent training in the Son-Rise Program. The program takes a unique approach to autism by asking parents and caregivers to enter the child's world.

Burris had pooh-poohed the approach in Steven's early years. Now she's willing to try. Son-Rise founder Barry Kaufman, in his provocatively titled book, "Autism Can Be Cured," poses this question: "If you could be happy or you could be cured from autism, which would you choose?"

Amy cried all night after reading those words. By morning, she had found her answer.

"I'm not going up there to cure autism," she says. "I want, at the least, for Steven to be safe and Lacey to be an effective human being, not traumatized by life with her brother.

"That might have to be the happy ending I settle for."

http://www.nwaonline.net

Part 1: 'Never Say Uncle'