Local schools, families struggle to keep up
By Monique Balas / The Bulletin
Published: May 20. 2007 5:00AM PST
Colin O'Connor's mischievous blue eyes twinkle when he laughs, which is often, and he moves with a frantic energy. The 6-year-old enjoys playing games with his stuffed dolls, using them to mimic social situations, and he is friendly to strangers.
Colin is also autistic.
Autism, a developmental disorder that has no known cause, comes in as many shapes and sizes as children do. The fact that there are so many more children with the disorder now than there were only six years ago presents unexpected challenges for school districts and families of children with autism.
Colin's mother, Terri O'Connor, estimates her family spends about $2,000 each month to supplement her autistic son's education with tutors, a slew of therapists - speech, occupational, physical - and a developmental physician to work with Colin.
"The district has provided as best they can," she said. "What my experience is, their caseload is astronomical. There is just no way that they can think about my child ... 10 minutes before they have to meet with me."
The O'Connors, the school district and the High Desert Education Service District have all been feeling the effects of a creeping increase in the number of students diagnosed with some form of autism.
In Bend-La Pine Schools, there currently are 124 students receiving specialized education for autism, said Patti Craveiro, director of special programs for Bend-La Pine Schools. In December 2001, there were 67, an 85 percent increase in six years.
By comparison, the district saw a roughly 13 percent increase in student enrollment in that same time period, according to numbers from Fiscal Services Director Brad Henry.
"For a town that I still consider to be small compared to Portland, San Francisco or L.A., I think there is a very large number of children that receive a diagnosis on a continual basis with ASD (autism spectrum disorder)," said Tracy Kennedy, the lead teacher of Stepping Stones School. Kennedy's school is a preschool program offered by the High Desert ESD for children ages 3 to 5 with autism spectrum disorder.
"They're coming here, and we're doing our best to serve them," Craveiro said.
But some parents say the district simply cannot provide the type of one-on-one attention their children need to succeed.
"They don't have enough time. They don't have enough resources to give a kid resources to get him talking," said Jill Sauter, who home-schools her autistic son, Derek.
She decided to take Derek, 14, out of school because she said he needs attention he simply cannot get in the classroom. Derek had trouble speaking and reading. But thanks to the time he and his mom spent doing mouth drills, with Sauter rewarding him with positive reinforcement, she said his skills have greatly improved. He is now an eighth-grader and only goes to High Desert Middle School for physical education class.
If the school district were to integrate Derek into a regular education classroom, his mother said, he would fall too far behind.
"They're doing book reports, he's trying to read," Sauter said. "He's learning how to put letters together to make a word."
But if he were grouped with other students with disabilities, he risks falling even further behind, Sauter said.
"If he was in a room with 10 other kids that had autism, he's not going to succeed in that situation," she said. "He needs to be with peers that can talk and ask questions."What is autism?
Because of its many forms, autism usually is referred to as a continuum, which is why it is referred to as a spectrum disorder.
Autism spectrum disorders are developmental disabilities that cause major impairments in social interaction and communication, sometimes resulting in unusual behaviors and interests. People with ASDs often learn, think and react differently than other people, according to the Centers for Disease Control and Pre-vention Web site.
For example, during a recent session at home with his private reading tutor, Heather Wingate, Colin worked on phonetics.
Wingate encouraged Colin to make an "ah" sound.
"Ahhhh," Colin responded, tapping his mouth repeatedly with his hand. Wingate then began a grammar lesson.
"Leo and Quincy was a very good boy," Wingate read aloud from a book. "Should we keep the 'was?'"
"I have brown hair!" Colin responded.
Autism rates are going up nationally. The CDC reported in February that about one in every 150, or 6.7 out of 1,000, children has some form of ASD. The agency said it is unclear whether the increase is due to changes in how autism is identified or if there is an actual increase, according to its Web site.
No one knows what causes autism, although some theories blame vaccines, genetics or environmental factors. They tend to occur in people with other medical conditions or in children whose mothers took thalidomide during their pregnancy, according to the CDC.
Under the federal Individuals with Disabilities Education Act, school districts are required to look at a student's needs and provide an education that addresses those needs, Craveiro said.
Teachers, specialists and parents work together to determine a plan for the child's educational goals and how to reach them, known as an individualized education plan.
Colin's is 25 pages long.
For instance, his plan involves having an educational aide who works in his classroom and a speech therapist, provided by the school district, who works with him three times each week.
The goal is to get special needs students into regular education classes as much as possible, Craveiro said.
How Bend-La Pine schools are coping
On behalf of the school districts, the ESD provides autism specialists who work in schools throughout Central Oregon to determine whether students are eligible for special education due to autism, said Paul Andrews, the director of special programs for the High Desert ESD.
Carol Cooley-Reid, an autism specialist and consultant who serves the Bend-La Pine and Redmond school districts for the ESD, said she is so busy traveling between schools that making autism diagnoses is her primary function. Six full-time and two part-time specialists divide seven counties among them.
In the ESD's service area, there were 163 autistic students in 2001. In 2006, there were 227 children with ASD, Andrews said. That's a 39 percent increase in five years.
"We are attempting to get more staff, because of course there's an increase in students," Cooley-Reid said. "All the schools want us there all the time."
Kennedy of Stepping Stones School has a staff of six, including herself, and together they are currently teaching 15 children at her school. Ideally, there would be one teacher per student. Since the program began in 1999, "I have never not ended up full," she said.
While Stepping Stones was designed to serve children one on one, the ESD is required by law to service all children whose parents apply. That means Kennedy must adjust the weekly schedule so that some students come only two days a week and some come only three days a week.
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“I believe that I could service more children if I had additional staff,” Kennedy said. “Right now, my hands are tied to take any more children ... There are basically no resources to hire another staff person should a student arrive on my doorstep who has the diagnosis and would benefit from the strategies that we use.”
Kennedy puts on a fundraiser each year to pay for new equipment to use in her classroom, but in the past two years, the money raised has gone toward hiring an additional staff person, she said. At High Lakes Elementary School, Colin’s teacher, Gaile Pascua, said she has “most definitely” noticed more autistic children over the years. She has worked with his mother to make sure his needs are met every day.
Because Colin cannot specifically articulate what happens at school, Pascua fills out a form that tells his mother how his day went. One day several weeks ago, for example, O’Connor found out that Colin changed his pants because he spilled something on the pair he was wearing.
“Some of my kids were not able to read, so we had to use all pictures, some were not able to talk,” she said. “So I have to find ways to make it work for them. Once I establish a way to teach them, then they got used to that, then it was easier to work with.”
The school district has been getting some increased funds from the state and federal government, but it is not enough to keep pace with the costs of hiring additional staff as well as providing for increases in salaries, health benefits and retirement benefits, Craveiro said.
Bend-La Pine has gotten about $1.9 million more in state funding and $1.3 million more in federal funding to serve special education students since 2001, according to information supplied by Henry, the fiscal services director.
What that means for the school district is that it is unable to add new programs or additional resources to deal with more autistic students, Craveiro said.
“We have to absorb those costs from the general fund,” she said. “That means I’m working harder, we’re all working harder at training our staff on autism, making sure that people understand that disability.”
How families are coping
Colin has the benefit of an educational aide all day long in his classroom, which his mother said happened only after a lot of back and forth with the school district.
Any time she asks for something, she said she must provide substantial proof that it will benefit her son. The O’Connors, Colin’s teachers and the school staff work together to determine how an addition to his education plan will help. Every decision they make is backed by loads of paperwork. O’Connor has file cabinets full of documentation from the school district.
“I never thought I needed an MBA to get my child educated, but you do,” she said with a wry smile.
Craveiro said one-on-one aides are only provided if a child truly needs them.
“I would never want to feel that we were unnecessarily or unwisely distributing resources based on the child’s needs,” she said. “It may not be the Cadillac version, but it is appropriate.”
Still, O’Connor insists that it is only through her frequent and forceful intervention that they have found a structure that works.
“For parents that are not really tenacious, their kids don’t get the services they need,” she said.
In addition to his aide, the school also provides Colin with a speech therapist three times a week to help him with basic socializing. O’Connor purchased the $75 textbook that Colin and his therapist use. And the therapist is unfamiliar with autistic children, she said.
Lynda Albers also has taken her child’s education into her own hands.
Her son, Robert, 15, has Asperger syndrome, a high-functioning form of autism. The disorder is often characterized by difficulty with social interaction, such as reading nonverbal cues, and occasionally an exceptional talent or skill, according to OASIS, or Online Asperger Syndrome Information & Support.
One day at school, a teacher raised her voice at Robert to take off his hat.
He does not respond well to yelling and reacted by screaming a list of obscenities, Lynda Albers said.
“An Asperger kid can function in the real world,” she said. “It’s really (an) embarrassment that’s going to set these kids off.”
Robert’s repeated troubles in school, which his mom blames on a lack of understanding, led to him withdrawing from school earlier this year.
“I worry about parents trusting the school system and not knowing what the laws are and their kids getting in a lot of trouble versus getting the correct services,” Lynda Albers said. “If they’re misidentified, they become problem children. They’re really not problem children, they’re just mis-identified.”
Craveiro, Bend-La Pine’s special programs director, could not discuss the case because she said the school district is bound by confidentiality laws.
Craveiro acknowledged that the district’s budget is tight, but she said they do a good job with what they have.
“It’s hard to add on additional staff and program developments,” she said. “What that means is we need to readjust our priorities, refocus our energies so we’re keeping up with the needs. And we are good at doing that.”
Parents still wish there were more resources accessible to them.
“I think there needs to be more in this community that’s specifically geared toward helping the parents,” O’Connor said. “It’s such a 24/7, 365 disability that impacts the family. If you empower the family to help teach the child, that’s less that the school has to do.”
“There’s not a whole lot of support here for parents,” she said.