Rhode Island mother fights school system for accommodations for son with Asperger's

From The Providence Journal:

It’s a weekday morning and Alex Azar (pictured), 12, is at home, hunkered over a laptop at the dining room table, engaged in a war game.

When he tires of the computer game, he may skim a book on world empires and scour the Web to learn more. Or he may practice the violin, play chess with his mother, or use his computer to catch a rerun of Stephen Colbert’s cable television show.

“I hear him laughing so hard, I come into the room … it’s Mr. Colbert,” Pamela Azar (pictured), his mother, says.

Reading, playing educational computer games, following politics have filled Alex’s days since the fall of 2007. It’s mostly how he spent fifth grade, sixth grade and, it’s how he is now spending seventh grade.

Pamela Azar wants her son back in school, but says the Lincoln School Department has failed to provide him with an appropriate learning environment.

The School Department also wants Alex in school and says Pamela Azar is violating the law by not sending him.

This is far more than a routine disagreement between a parent and officialdom over the quality of education a child is getting. This is a battle of wills over what’s best for a child with autism.

Alex has Asperger’s syndrome, a kind of autism that manifests itself in a variety of ways. For Alex, it means an awkward gait, and trouble using scissors. It means being thrown off by the unexpected, a noise, a disruptive classmate or an unfamiliar face. It means having an intense interest. It means having above-average intelligence but taking words and actions literally, often misunderstanding the message.

One expert says Alex also suffers from severe school phobia, a notion his mother vehemently denies.

Pamela Azar and school officials have taken the dispute to Superior Court, Family Court and federal court; to at least three state-appointed hearing officers and, most recently, to the state education commissioner. Two autism experts have been brought in to help broker a solution.

All to no avail.

To make a point that Alex is a passive child, his mother tells this story.

A single mom, she named her only child after the world’s youngest conqueror, Alexander the Great.

Knowing that, Alex once flipped through the pages of Dictators that Shook the World, one of his many books, to learn what he could about the Macedonian conqueror his mother told him had done much to spread Greek culture.

“Alex will say, ‘Yeah, but mom, look what he did to people.’ ”

The first hint of a problem with the son she thinks will be a modern-day conqueror came halfway through kindergarten. She was summoned to the special-education office. “I was scared to death,” she recalls.

Alex, she learned, was doing fine academically but he seemed to have coordination problems. He was having trouble walking up and down inclines. Nothing much came of that session, but Pamela Azar knew her son had been “red flagged” as possibly having a developmental disability.

Then came the kindergarten concert.

Alex told his mom he didn’t want to sing the nursery rhyme, Jack and Jill.

Alex tried to explain that the poem made light of children falling down. “And I still didn’t get it. I said, ‘Alex, will you just do it?’ ”

On the stage, Alex started blinking uncontrollably. Afterward, Pamela Azar took him to the family doctor.

“The minute we walked in, he said ‘This child is having an anxiety attack.’ ”

The doctor referred Alex to a pediatric neurologist Maria Younes who, a couple of years later, reached a diagnosis that she and others had come to suspect: Alex had Asperger’s syndrome, the least severe form of autism.

Pamela Azar thought to herself: “Wow, this is a gift from God.”

She was aware that some of history’s brightest minds, Thomas Jefferson, Albert Einstein and Madame Marie Curie, were suspected of having Asperger’s, long before the syndrome had a name.

“The moment I found out was a reaffirmation of my feelings that my son could reach the stars and that he could do whatever he wanted. And that I had a feeling, when he was born, that he was going to make a difference in this world, a positive difference.”

It was in third grade at Central Elementary School that Alex began to lose “his coping mechanisms and started to drift away,” Pamela Azar says. His small, crowded classroom played havoc with his allergies and seemed to awaken his Asperger’s symptoms. Alex got through the year after his mother convinced the school to switch Alex to a more serene classroom.

But the war had begun.

Fourth grade didn’t go smoothly. He would go to school, but began to resist entering his classroom so the staff took him to the library or let him sit on a bench near the main office. By February, the school was calling to ask that Alex’s grandfather pick him up halfway through the day. He stayed home enough to prompt the School Department to pull his mother into truancy court. The case was eventually dismissed.

Alex attended eight days of fifth grade. Pamela Azar says her son was in an inappropriate classroom.

In December of that school year, the two sides agreed to let a third party, Susan Constable, director of the state’s autism support center at Rhode Island College, settle the dispute. Constable’s task was to recommend which classroom setting would be the best fit for Alex so he could resume fifth grade.

On Jan. 2, 2008, Constable, at a meeting with Lincoln special-education staff, suggested two classrooms, calling a third option the least appropriate for a child with Alex’s diagnosis. Pamela Azar declined to pick. She says now that she wanted the classroom Constable had taken off the table. That teacher, she says, “had experience with kids like Alex.”

Alex continued to stay home.

As a “temporary” measure, the School Department was sending a tutor to the family home on Lincoln’s Great Road, the home where Pamela grew up and where she and Alex live with her father, Louis Azar, a retired lawyer who once served as Lincoln’s solicitor. The tutor spent five hours a week with Alex.

In March, the School Department asked the federal court to order Alex to school. “It cannot be argued that this amount of time out of school, especially for a child with [Alex’s] disabilities, is not causing harm, both educationally and emotionally,” the School Department told the judge.

The next day, Pamela Azar countered by going to a state court, asserting that the School Department “has failed and refused to perform its obligations” under special-education law.

Alex never returned to Central Elementary.

Still, the tutor gave him A’s and B’s that year, his mother says, and, at the start of the next school year, he scored “a few notches under distinguished” on the multi-state test that measures how well Rhode Island children are doing in school.

Again, an agreement to resolve the mushrooming dispute emerged in May: Both sides would give up their lawsuits and abide by the recommendations of another outside consultant, Terry Harrison-Goldman, a pediatric neuropsychologist in Providence.

The goal was to smooth the way for Alex, who had been out of school for a year, to enter sixth grade at the brand new Lincoln Middle School.

In August of 2008, just before the start of the school year, Harrison-Goldman recommended that Alex be put in an accelerated class, that an aide be assigned to Alex, and that a specific classmate who had been Alex’s buddy in the early grades be put in the class as well.

The School Department agreed to accept the recommendation, even though neither Alex nor his buddy qualified for the “advanced learner” program. But Pamela Azar, convinced that the transition plan came too late to allow staff to be trained to work with Alex, refused to sign off on it.

Nevertheless, Alex started school. Some School Department representatives thought the first day went well. “It was a train wreck,” his mother says. At school day’s end, Alex aggressively acted out and demanded that his mother take him home.

He was stressed by having an unfamiliar aide and became even more upset when he was taken to the wrong gym class, one with children with severe physical disabilities because “he had no previous experience with handicapped children and it scared him,” a hearing officer would later conclude.

Alex stayed home while school officials, the consultant and his mother tussled over his educational fate.

They tried having him spend time doing schoolwork in the library, accompanied by a friend or relative he trusted.

After making sporadic appearances at school during the fall, Alex never returned.

Harrison-Goldman, the consultant who stayed involved in the case, concluded that Alex had school phobia, an anxiety so great he was unable to enter a classroom. She would tell a hearing officer later that she thought his anxiety was so high it was overwhelming the autism diagnosis.

At yet another meeting of Lincoln staff and Pamela Azar, Harrison-Goldman said that Alex needed residential placement at Bradley Hospital, the state’s mental hospital for children, where his needs could be addressed on a 24-hour basis.

Pamela Azar was so distressed by the notion of hospitalization that Harrison-Goldman suggested Bradley’s day school. That, too, was unacceptable to Pamela Azar because, she says, the school serves many children with behavioral problems and being in class with them would not only stress Alex, it might harm him.

“If it’s the wrong environment, you can change a peaceful child into a violent child because they get so frustrated that nobody is listening to them or nobody understands them,” she explains.

In the spring, his mother sought another administrative hearing to block Lincoln from sending Alex to Bradley’s day school.

At the hearing, Alex’s neurologist, Dr. Younes, told the hearing officer, Maureen A. Hobson, that sending Alex to Bradley with behaviorally disordered children would be the antithesis of the learning environment he requires. He needs to get back to school soon, Younes said, but in a place with strong academics and where there is “100 percent adherence” to a predictable, controlled and safe environment.

Hobson ruled in April of this year that the Bradley school offers “the least restrictive environment in which the petitioner can make academic progress at this time.” The decision, Hobson wrote, is based on testimony that Bradley could provide therapeutic intervention so Alex could develop strategies to cope with stress and eventually overcome his phobia. Also, she wrote, the classes are small and academics are tailored to each student’s capabilities.

She noted that Bradley staff had testified that the school has achieved great success treating students with Asperger’s syndrome and getting them back to their public schools.

Pamela Azar told hearing officer Hobson that she not only objects to Bradley, she wants Alex to attend the Wolf School, a small private school in East Providence “dedicated to providing an educational environment where children with learning differences become successful, secure learners,” according to its Web site.

Both Harrison-Goldman, the outside expert, and Maryann Struble, Lincoln’s director of student services, testified that Wolf would not meet Alex’s therapeutic needs. In rejecting Wolf as an option, Hobson noted that Wolf is not a psychiatric facility.

(Spokeswomen for both Bradley and Wolf were reluctant to provide the cost of a year’s tuition. The Lincoln School Department paid Wolf $34,904 for a child in 2007-08; its most recent placements at Bradley cost from $58,000 to $74,000 a year, says schools business manager Lori Miller.)

Pamela Azar challenged Hobson’s decision in federal court, where the case is pending.

In August, Pamela Azar asked the state education commissioner to order that Lincoln resume home tutoring for Alex while waiting for the federal court hearing. Commissioner Deborah A. Gist rejected home tutoring as an appropriate option, saying it would both “exacerbate” Alex’s school phobia and undermine his return to a school setting. Gist said Pamela Azar didn’t have to accept Bradley but could not use her right to object under special-education law to undermine the state’s compulsory education law.

By keeping him home and refusing Bradley, the mother’s decisions “have not only deprived him of special-education services but any education whatsoever,” Gist said.

DRIVING BY the splashy new middle school on Jenckes Hill makes Pamela Azar cry.

That’s where she teaches social studies. The wisp of a woman who is waging war for her son is battling her own employer.

And, she says, the teachers she thought were friends have “broken my heart” by not coming to her support; some won’t even speak to her.

Stressed by her protracted fight and by the isolation she feels, Pamela Azar has been on medical leave since April.

While she has spent more than four years resisting the authorities, from principals and administrators to state hearing officers and autism experts, Pamela Azar will soon face the chief judge of the Family Court, Jeremiah S. Jeremiah Jr. The Lincoln School Department has charged her with educational neglect, a truancy allegation too serious to be handled at the local level.

“I’m scared,” she whispers to a reporter as she waits in the courtroom for Lincoln School Committee v. Azar to be called. A conviction carries a maximum penalty of $500 and/or up to six months’ imprisonment, though, in practice, fines are unusual and prison is virtually unheard of.

On this day, only a pretrial conference takes place.

EARLIER, as Pamela Azar sits at her dining room table, she is unbending.

“I’m going to do whatever I can to make sure he gets the proper education, whatever road he wishes to travel…. to take him the farthest he can go. And that’s my mission in life because I’m his mother and I brought him onto this earth.”

Yet, she recognizes that Alex can’t stay home forever.

“I want my son to be in school and he wants to be in school,” she insists. Then, shifting to the cutesy tone mothers often use with their toddlers, she adds, “before my little buddy gets so comfortable. Right, Alex?”

“Offff …. coourse,” Alex replies, stretching out the syllables, his gaze fixed on his computer screen.

These days Pamela Azar lives and relives each skirmish, mentioning the dates for the next encounter in federal court, in Family Court, in the hearing rooms of the Department of Education. Then, she darts ahead. Not to tomorrow, but to years from now.

Alex graduates from a prestigious university. He becomes a lawyer, or a judge. Maybe, a diplomat, or a Pentagon strategist.

But there is still the matter of middle school.