Original article no longer available
The Freeport Journal Standard
By Robert Lewis, The Journal-Standard
Jan 29, 2006
Darren Nesemeier plays trumpet during band class Tuesday afternoon at Carl Sandburg Middle School. Darren had a number of problems as a student in Lena-Winslow’s special education program and was all but out of school after the second grade in 2002. The Nesemeiers moved Darren to Freeport School District 145, where he is now in sixth grade at Carl Sandburg School and on the honor roll with all As and Bs on his report card. Photo by Joe Tamborello
Schools, parents need to cooperate to best help kids with special needs
FREEPORT – When Darren Nesemeier entered kindergarten in Lena-Winslow School District 202 in 1998, his disabilities began to surface. A bright kid, Darren knew what he wanted to say but was unable to phys
ically articulate the words.
The school started giving Darren speech therapy for 40 minutes a week, but there seemed to be no change in his condition, his mother, Debbie Nesemeier said.
“I think it was hard for Darren, and that’s when the frustration started,” she said. “He couldn’t communicate with the students and teachers.”
Darren’s story is not unique; in fact, it’s all too common in schools large and small throughout the region. At a time when the population of students with special needs is growing, resources to meet their unique and specialized needs remain in short supply.
Special education is a maze, said Cindy Rackow, a youth education advocate with RAMP, an agency that helps families of special-needs children navigate the system. With all of the regulations and mandates, and given the fact that every child with a disability is different, parents and educators can have a hard time understanding what kids are entitled to under the system, what they need and how to get it for them, she added.
There are rules preventing school officials from commenting on specific cases, and therefore officials who worked in Lena at that time would not confirm or deny specifics regarding Darren’s case. His mother, though, offered to share his story from the family’s perspective.
After kindergarten, Darren headed to “junior first,” a step below the normal first-grade level. He continued to receive speech therapy from the school, as well as from a therapist at The Monroe Clinic Hospital. Debbie and her husband, Scott, also worked at home with Darren, and over time his speech improved.
Darren entered first grade in 2000. It was a good year, under the circumstances, but his frustration led to some behavioral problems, Debbie said. Darren is a perfectionist and minor breaks in his routine set him off, she said. If he was working on an assignment and his pencil broke, Darren would act out, throwing things and tipping over desks.
That’s when medication entered the picture. He started taking clonidine, an antihypertensive drug, in January 2001 to help with his impulsive behavior and high frustration levels. A psychiatrist removed him from clonidine two months later and placed Darren on Concerta. Then, in April he started taking Luvox for obsessive compulsive disorder, or OCD, and depression.
In late September during second grade, Darren started taking Ritalin, the drug most commonly used to treat attention deficit disorder, or ADD. By then, psychiatrists, psychologists and others had diagnosed Darren with attention deficit hyperactivity disorder (ADHD), OCD, depression and bipolar disorder.
As is often the case with children suffering from mental health problems, a hard and fast diagnosis proved elusive. Different doctors would diagnose Darren with different disorders throughout the years and refute previous doctors (he turned out not to be bipolar), Debbie said. Every time the school would call with any type of problem, she would take him to the doctor where he would get another test, and oftentimes, a change in his medications.
Debbie didn’t like Darren being on so many medications. He turned into a “zombie,” she said, and started acting oddly – jumping off the garage and trying to light a fire in his baby sister’s room. She wasn’t the only one who didn’t like the drugs.
One night when tucking him in, Darren pleaded not to make him take the pills.
“He said, ‘Mom, please don’t make me take this medicine anymore. I don’t like how it makes me feel,’” Debbie recalled. “My heart just broke.”
While some children get dramatically better on such medications, there are others for whom they aren’t as effective, or who have adverse reactions to them, experts say. And sometimes, the medication needs more time to work.
Things always get worse before they get better, said Heather Perkins, a youth education advocate for RAMP. Perkins questioned the constant changes to Darren’s medication and said, in her opinion, efforts to help Darren weren’t given enough time to work.
Legal requirements for schools
By law, schools must come up with an individualized education program, or IEP, for every special-education student. Blatant disregard for the plan on a school’s part could lead a parent to file a complaint, Perkins said. But there is a gray area. Sometimes a school may not be violating the IEP but the student still might not be getting exactly what they need.
“The hard part about that is you don’t really know what all is going on at the school,” Perkins said.
If a parent feels a school is not meeting the requirements of their child’s IEP, they can file due process with the Illinois State Board of Education. In such a case, the state assigns an officer and schedules a hearing.
Such hearings can be expensive because parents may need a lawyer to mount a proper argument. Legal representation can cost a parent as much as $30,000, Perkins said. The only other alternative is to find a free legal service, but those lawyers are often overworked and unable to properly prepare.
Many situations end up in a due process hearing because of a simple lack of communication, Perkins said.
“Conflicts come up because parents feel they have been lied to, and schools and teachers feel they have been up-front about everything. Miscommunication is a big problem,” she said.
Sometimes schools and educators have a tendency to only contact parents when there is a problem, said Karen Sanders, District 145 director of pupil personnel services.
“If a parent hears only the problems and weaknesses, a parent can get very defensive,” Sanders said.
Teachers can also get defensive, Perkins said. When a RAMP advocate is sitting in on a meeting taking notes or asking questions about an IEP, educators sometimes feel threatened.
“When I started, there wasn’t a good working relationship (with the Freeport schools). RAMP was considered that other four-letter word,” she said.
District 145 has worked hard to open the channels of communication and now has a much better relationship with RAMP, which ultimately helps everyone, Perkins said. The same cannot be said for some of the smaller, outlying districts, she added.
Defensiveness on both sides can lead to bad relationships, Karen Sirgany said. Sirgany, now the superintendent of Warren School District 205, was the superintendent in Lena when Darren was a student there. Parents understandably want what is best for their children and schools have to meet the needs of all students, she said.
“Emotion does get in the way. Both sides need to find a way to clear the emotion out,” Sirgany added.
Parents just want to know what is going on, Linda Plenger said. Plenger is the mother of a special education student in District 145. She said most parents have no experience with special education, and yet if a parent does not take an active role, their child might not get what they need.
“My frustration is there (are) some parents who don’t even understand their IEPs or what their rights are,” Plenger said. “It’s hard enough to be a parent of a special child, and now (parents) need to know about education when it’s (the schools’) job.”
Sirgany acknowledged schools do need to work on keeping parents in the loop.
“I know sometimes you know what you’re doing and you just think osmosis is going to work and (parents will) understand it,” she added.
But communication is a two-way street, Sirgany said. Educators sometimes don’t realize the problems parents are seeing and parents don’t often come to the school until a number of incidents have occurred. By then the parents are at wit’s end, and the chance to talk rationally might have long since passed.
From bad to worse
At the same time as Darren was taking all these medications in second grade, things were getting out of control. His rampages were becoming more and more violent, Debbie said.
In November 2001, Debbie took Darren to see a doctor at the University of Wisconsin Children’s Hospital. They almost immediately began to wean Darren off Concerta, Depakote and Luvox.
In January, Debbie contacted RAMP and Perkins began to work with the family. That same month, the school put Darren on a program where he was only given an hour of education a day. He had to earn more time through good behavior.
Darren was not yet 9, a second-grader with a laundry list of issues, and he was all but out of school.
With Darren steadily missing more and more school, Debbie took him to Mayo Clinic in Rochester, Minn. The clinic admitted him to a special program, and in April Darren underwent four days of intense testing. In a conference call with Debbie and district officials, the clinic’s doctors diagnosed Darren with a learning disability in reading and written expression, and short-term memory retention. They also confirmed the ADHD and ADD, and added another one, oppositional defiant disorder, Debbie said.
It became increasingly obvious that Darren needed help beyond what the Lena district could offer.
Schools work to meet special ed challenges
The biggest single obstacle school districts face in dealing with special education students is money, Sirgany said. Lawmakers continue to expand the definition of special education, meaning more students qualify for services, and yet the federal and state governments are not providing extra money for schools to meet the additional burden.
The Warren schools currently get $8,000 a year from the state for a special education teacher and $2,800 for an aide, Sirgany said. A teacher costs a bare minimum of $25,000 and can cost the district as much as $50,000 depending on experience.
As for the federal government, it has not met its original pledge of support for special education as outlined in the Individuals with Disabilities Education Act of 1975, said Cecil Cahoon, a spokesman for the National Education Association.
“In the 30 years since it first promised to fund 40 percent of special education needs, Congress has never honored its commitment,” Cahoon said. “That means state and local municipalities need to come up with the rest.”
The federal government has committed to fund a mere 17.8 percent of special education costs in 2006-2007, he added.
The financial burden can put a strain on districts already struggling to stay in the black. The average operating expense per pupil was $8,085 in 2003-2004 for Carroll, Jo Daviess and Stephenson counties, according to state board of education information.
The cost to educate one special education student with severe needs can be between $20,000 and $30,000, Sirgany said. If that student needs to be transported to another district, that cost can climb as high as $50,000, she added.