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Educating kids with Asperger syndrome, autism and others on the spectrum

TAMPA — They were at a bowling alley. Their son was with kids from his T-ball team. He was about 5 years old. • The other boys bowled and sipped soft drinks. Cody Underwood was out of control, running around and flapping his arms. "I looked like a bird, I bet," he says. • Sandy Pulliam had wondered if her child just had a lot of energy, or if something more serious was going on. • Now, comparing him with other boys his age, she knew. • Tens of thousands of children are leading their parents to similar awakenings, leading to medical diagnoses barely conceived of in previous generations. Known generically as "the spectrum," autism, Asperger's syndrome and pervasive development disorder are to this era what attention deficit-hyperactivity disorder was to the 1990s, with a potpourri of pharmaceuticals to match.

These conditions create vexing problems for parents, especially when it's time to put the child in school. Where do you send a child who can read and write, but goes into a rage over graffiti on the wall?

That description fits Cody Underwood. He has Asperger's syndrome, a condition in which people with normal intelligence have deficient social and communication skills. Like most parents of disabled kids, Cody's parents believe it is society's responsibility to ensure an appropriate education and social setting regardless of a child's needs.

It's like this, says Crisha Scolaro, one of the founders of a group of charter schools for learning-disabled children: "If a child doesn't want to be in school, there is something wrong with the school, not the child."

Cody has been through six schools and twice as many medications in his 14 years. Nearly every step of the way has been fraught with conflict and humiliation. For his parents, getting Cody an appropriate education has been an education in itself.

Analytical mind

Cody is a pale, skinny kid with straight black hair and a sprinkling of freckles. He lives in a four-bedroom house in Westchase with his mom, stepfather Andrew Pulliam, and stepbrothers Andrew, 14, and Austin, 13.

On this Monday afternoon, he and his mom are in the living room, talking about pets.

"Two categories," Cody announces. "Family pets and Cody's pets."

Sandy is an animal rescue volunteer, so dogs and cats abound. But at the moment Cody is thinking about the minnows he caught in a nearby pond.

"Thirteen minnows," he says, leaping to his feet. "Yes, 13 minnows, 13 minnows. . . . I don't think it's exactly 13, I'll go count them."

Sandy talks him out of it. He settles into an armchair under a crimson blanket and continues the conversation.

Cody feels most comfortable discussing science, animals, anything factual and predictable. No fiction, and no religion either. He can't get his mind around an unseen God.

Sandy has heard the term "little professor" used to describe children with Asperger's, who can master a dazzling number of facts about subjects they find interesting. Cody, for example, reads medical journals for fun.

"I wouldn't have him any other way," Sandy says.

Still, he comes with complications. For reasons scientists do not fully understand, children with Asperger's have trouble reading social cues. They see situations in black and white and are often indiscreet. They will tell a failing schoolmate he should have done his homework, for example.

That kind of unrefreshing candor, along with their sometimes geeky fascination with everyday things, makes kids like Cody prime targets for abuse at school.

Early memories

The Pulliams' quest for a suitable school for Cody began at Chapel in the Pines, a church-based center where he attended preschool.

"That's where I first started getting bullied," Cody says.

He begins to spin a story.

He remembers a big boy who was mean to everyone except a fellow bully. "He chased Andrew around a lot and one time he grabbed Andrew's shirt. . . . I saw the teacher coming and I yelled to the teacher and the kid got in trouble. . . . I think he got expelled because I never saw him again."

The theme is the same as he discusses most any school. "Bullies, bullies, bullies, bullies, bullies.''

Other than one episode at a petting zoo, Sandy does not remember many problems at preschool.

For kindergarten and first grade, she placed him in Westchase Elementary, rated A by the state's grading system for schools.

There, he struggled to read and was loud in class. A doctor diagnosed Cody with ADHD. In first grade, Sandy consented to giving her child medication: first Adderall, later Concerta. He caught up with his reading, but behavior remained a challenge.

She put him back in Chapel in the Pines to see if that was a better environment. But he was disruptive, had meltdowns. He remembers getting in trouble a lot.

"Breakin' stuff, going places I shouldn't be, going into the chicken coop. . . . I remember a black snake . . .''

"Story time," his stepfather interjects, a shorthand he uses when Cody exaggerates his memories, or wanders off track.

Frustrated with their lack of progress, they sought out a private school known for success with kids with ADHD: Tampa Day School, in Citrus Park.

There, Cody was diagnosed with pervasive development disorder, a condition on the same spectrum as autism and Asperger's, in addition to his ADHD.

"Everybody was mean," Cody says. "I hated it there. It was like every day I would be greeted with a cuss word or something."

Tampa Day School head of school Lois Delaney says now that her school wasn't right for Cody because of the unique issues faced by children with Asperger's.

Midway through the fourth grade, the Pulliams returned to Westchase.

Joyce Wieland, now a school district supervisor for special education, had just taken over as principal. She assured the family, "We're going to take care of him."

They crafted an individualized education plan, the blueprint for any student with special needs. Instead of taking a music class, which he could not tolerate because the noise upset him, he spent time helping a group of younger children who had learning disabilities. He was happy.

"Mr. Campbell was awesome," he says of one teacher.

Still, nothing was easy; one specialist thought Cody was bipolar because he grew angry when people did not understand him. At one point he was on six medications.

But fourth grade was good. Fifth grade was better. Along the way, the family finally got what appears to be an accurate diagnosis of Asperger's.

Then it was time for middle school.

The roller coaster

Cody started sixth grade at Davidsen Middle School in Tampa. From the start, the Pulliams say, they got calls about his behavior and run-ins with other children.

After just a few days, "they had 10 people of the faculty with us about Cody," Andrew Pulliam said. "I said, wait a minute!"

Cody could not handle the noise, the lockers, the cafeteria, the gym. About all he liked was the guidance counselor. He couldn't make it in mainstream classes but he was too advanced for special ed.

"They have nothing for kids who are in-between," Sandy said. "They honestly don't know how to deal with him. That's what the assistant principal told me. Which floored me, because I'm thinking, how can you not know what to do? They have to go to school, right? It's the law."

Cody was at Davidsen for less than a month. He left after a dispute with another child, which he didn't want to talk about for this story.

In interviews, administrators at Davidsen talked about the difficulty of meeting children's needs at such a volatile age, in a school of 1,200 students, and especially with a condition as unusual as Asperger's.

"You learn it when you are confronted with it," said Principal Brent McBrien, who came to the school after Cody was gone.

Educators are not on their own, said district autism specialist Glenda Koshy. The district has specialists who can help in such cases. The education curriculum includes spectrum disorders, and there is in-service training for those who began teaching before those courses were available. Educators go to great lengths to keep children in their neighborhood schools, to give them a mainstream experience, and to lessen the stress of moving.

"The problem is, it takes time to know if that's working," McBrien said. "And that time-consuming process can frustrate all parties, the parents, the teacher, the student, the administration, you name it."

After Davidsen, the Pulliams tried Tampa Charter School, population 150. But in that smaller setting, Cody felt even more exposed. He hated school. He cried every day.

Sandy tried homeschooling to get Cody through the remainder of sixth grade. She bought a computer program. But she did not feel she could offer him what he needed, she said.

"He was so bored."

The Academies

Crisha Scolaro's son Anthony is 10 years older than Cody. She and her husband Edward struggled to find a school that could help him with his learning disability when he was in elementary school. With help from doctors, specialists and a lawyer, they got him into special classes.

But there was nothing suitable for middle school, so the Scolaros and another family joined forces to form a charter school.

The result was the Academies, a campus in East Tampa that serves children with learning disabilities from elementary age to post-high school.

In the decade since they began organizing their schools, the number of children diagnosed with autism nationwide has increased about fivefold, estimated at more than 250,000. The population is overwhelmingly male, leading educators to wonder if girls, who typically are better behaved at school, are underdiagnosed.

Studies say it can cost three or four times as much to educate a student on the spectrum, although careful budgeting has allowed the Academies to function for considerably less, in part, because they do not have students who are severely autistic.

Scolaro rejects the notion that mainstreaming, or "inclusion," as it is now called, is best for a child with social disabilities. Too often such children simply shut down and drop out of school, she says.

To counter the argument that kids are missing out on the full school experience, the Academies offer sports, student government, talent shows and dances.

"These kids would never get these opportunities in a regular school," Scolaro said. "They'd be in the corner in the back of the room, scared to do anything."

Sandy was frustrated to the point of tears when, during a conversation with a Hillsborough County School District official, she learned about Quest Middle School, part of the Academies group. The Pulliams took Cody for an evaluation in June 2007.

They were mortified when he sat on the floor and talked about frogs. But the resulting report "described Cody unbelievably to a T," Sandy says.

Cody corrects her: "But there's no 't' in describe."

Slowly, counselors and teachers coached him in how to handle conflicts. As he became more comfortable, he made friends.

During a recent history lesson at Quest, he delivered a speech about J.R.R. Tolkien, the Lord of the Rings author who fought in World War I. He spoke calmly and clearly. Every classmate paid attention. There was no eye-rolling among the other students, no surreptitious texting, no "That's what she said."

It was like bizarro middle school.

Administrators say the children are so cordial because so many were victimized in their previous settings. The curriculum includes memory skills and anger management.

"At all the other schools, I've never gotten an award, you know, like honor roll or anything," Cody says. "I've never gotten all A's. Actually this year for the first time, ever, ever, ever, ever, I've gotten straight A's. But the best thing I want to tell you about is how many friends I have there. I'm still bullied, but nowhere near as much as I was."

Sandy has already enrolled Cody in Pepin, the affiliated high school.

He wants to attend college in Colorado, "because it's a big environmental place."

Sandy wants to encourage him, but she wonders: How will he survive in a dormitory?

Marlene Sokol can be reached at (813) 269-5307 or sokol@sptimes.com.

A day in the life

For Cody Underwood, having Asperger's means that any social situation can be fraught with emotion and complication. Here are some recent scenes from his life.

Cody is shelving books at the library, a volunteer job that suits him since, on top of everything, he experiences some aspects of obsessive-compulsive disorder.

He is fascinated with a book about minerals and rocks. He goes to check it out. A librarian says he owes a few dollars in late fees. Cody is mortified. He does not calm down until the fine is paid. Then he returns to work.

Cody is with friends at a picnic in Palm Harbor. His stepbrother Austin sees him sharing fruit salad with a close friend.

"There's Cody, being nice for the first time," Austin says. He gets no response. He repeats it. Still no response. He repeats it again. "For the first time!"

Cody erupts. "Mom, Austin won't stop calling me names!"

• • •

During the same picnic, the boys are throwing a football at John Chesnut Park. Cody reaches for something on the ground. He stands, cradling his hand, face beet red, howling in pain.

"Something bit me," he says. "A spider! It hurts!" Knowing how acutely Cody feels pain, his mother tries to quiet him, looking in vain for signs of a bite. One of the children calls him a baby. No one has ice. Sandy is sure that, one way or another, she will have to leave the park and take Cody for a 20-minute car ride.

Which she does. And it works. She smiles. "This is my life."

For more information

Go to www.theacademies.us for more information about Quest and the Academies. The schools are closed for spring break. They will host an open house at 6 p.m. Tuesday at 3916 E Hillsborough Ave., Tampa. For information about education for exceptional students in the Hillsborough public schools, call (813) 273-7025. In Pinellas, call (727) 588-6032.

Educating kids with Asperger syndrome, autism and others on the spectrum 04/03/09 [Last modified: Friday, April 3, 2009 6:28pm]

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