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| Saturday, Mar 17 2007 8:50 PM
Last Updated: Saturday, Mar 17 2007 10:28 PM
Bonny Hulsy gently wraps her daughter's platinum blonde hair around a curling iron each morning.
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Bonny Hulsy brushes her 19-year-old daughter Caroline Hulsy's hair. Caroline is autistic and attends Valley Achievement Center.
Callie Mitchell, left, a student from St. Johns Lutheran School, helps Caroline Hulsy with a puzzle as Tracy Holdcraft a program manager at Valley Achievement center watches.
Henry A. Barrios / The Californian Instructional assistant Rebecca Villarea, right, helps Caroline Hulsy concentrate in a specific task at Valley Achievement Center in Bakersfield.
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Caroline Hulsy, 19, is not responsive. Her blue eyes stop on various spots in the room and she repeats phrases from different times and places. She's in her own world.
The young woman, like one out of about every 150 children, has an autism spectrum disorder. The number of younger children diagnosed with the disorder is growing at a startling pace. About 76 percent of autistic clients at the Kern Regional Center, a state center serving local developmentally disabled people, are now younger than 18.
Within the next 10 to 15 years, many of these children will depend on local high schools, community organizations and tax dollars to serve them.
Hulsy and others like her area preview of the tidal wave to come.
Hulsy is a sweet, affectionate woman who adores her father, music and cottage cheese. But she can't function on her own.
Her parents make her meals, dress, bathe and entertain her. Each morning when Bonny picks an outfit for Caroline, she imagines what Caroline would say if she was a typical 19-year-old woman.
"If she could talk to me and tell me how she feels," Bonny Hulsy says, "I know she'd want to look the best she possibly could."
Education
Caroline Hulsy spends most of her day alone in a room with an instructional aide at the Valley Achievement Center, a nonpublic school her mother co-founded.
The center has about 75 students among all its programs, said center founder and director Jolene Billinger. Nine aides and a teacher attend to eight older students, including Hulsy.
Teacher Diana Sevillanos said Hulsy has made a lot of progress since she met her last winter.
"Before, I would say, 'Hi, Caroline,' and she would just stare at me or start stimming," Sevillanos said. Stimming is when autistic people repeat certain behaviors, sometimes to calm themselves. For Hulsy, stimming consists of rocking back and forth and shouting. "Now she says, 'Hi, Diana.'
"Things we take for granted in everyday life become instructional for them," Sevillanos said.
The center tracks Hulsy's progress by meticulously recording her every move. Instructional aide Rebecca Villarreal makes a tally mark every time Hulsy asks for the bathroom or for help.
Hulsy, like most autistic students, follows a schedule, which consists of a board with photographs. Each picture represents a part of her day -- a toilet for bathroom breaks, a desk to signify work time and a TV to represent break time. Many autistic children understand pictures better than words.
When Hulsy completes a task she says "finished" and moves the picture from one side of the board to the other.
One of the first things on Hulsy's schedule is work.
Villarreal sits next to Hulsy andputs a piece of paper with rows of dots in front of her.
"Do this," Villarreal says as she draws a straight line connecting the dots in one row. She hands Caroline the blue marker.
Hulsy mimics her, drawing a straight, blue line through the dots.
"Good job!" Villarreal says. They do the exercise several more times. It's called discrete trial training done under the philosophy of Applied Behavior Analysis, an approach to educating students with autism, among others.
The idea is to help Hulsy improve her fine motor skills.
"Eventually, we're going to move into writing," Sevillanos says.
Other lessons include identifying a penny, recognizing her own name in writing, stocking grocery store shelves, preparing lunch and asking for things.
The lessons never stop, even during lunch when Hulsy tries to eat a quesadilla.
Sevillanos takes Hulsy's fork from beside her plate and holds it. Hulsy can't eat without her fork.
"I want quesadilla," Hulsy says.
"You already have quesadilla," Villarreal says. Hulsy takes a few seconds to think about how to get at her lunch.
"Fork please," she finally says.
Villarreal hands her the fork. They took the fork from her to force her to practice asking.
"She knew she wanted a fork," Sevillanos says. "She just couldn't come up with the communication to tell you that."
Lifelong care
In some ways Hulsy is lucky. Her parents will likely take care of her for the rest of their lives.
"I have to stay healthy and live a long time because of Caroline," Bonny Hulsy says as she picks at a salad. "No one is going to watch over Caroline like me and my husband."
Not all autistic adults who need constant care are as fortunate. Some live with foster families. Others live in group homes or state institutions such as the Porterville Developmental Center.
In some cases, autistic people are eligible for Supplemental Security Income money from the government, said Jeffrey Popkin, associate director of Kern Regional Center. The rules about who gets what are complex, but qualifying autistic adults who live independently might receive about $856 a month, said Kern Regional Center revenue coordinator Kim Varley. Qualifying adults who live in a state-licensed residential facility might receive about $1,055 a month, Varley said.
Group homes can cost anywhere from $1,600 to $5,000 a month, depending on how much care a person needs, Popkin said.
When the money doesn't cover the cost, the Kern Regional Center makes up the difference with state and federal money, Popkin said.
It's one of the reasons so many experts advocate for quality education. Education can help autistic people live independently.
The future
The Hulsys are now trying to figure out where to send Caroline when her time in the school system runs out in three years.
"We have to reinvent the wheel all over again, and it's a really agonizing, tough thing to go through," Bonny Hulsy said.
The Valley Achievement Center already offers Supported Living Services and a Supported Employment Program to help developmentally disabled adults find jobs and live as independently as possible. Billinger said the center is looking intodeveloping more programs for autistic adults.
Other groups also offer options for autistic adults. A few examples include Taft College, which offers a Transition to Independent Living Program for some developmentally disabled students; the Kern Regional Center, which coordinates services for autistic people of all ages; and the Kern High School District, which helps autistic adults until the age of 22.
The Kern High district often moves autistic students to a young adult transition program once they turn 18. The transition program focuses on vocational training and community participation.KHSD special education coordinator Patricia Young said the district is thinking about adding another young adult transition class next school year.
"We're really just looking at giving them the best quality of life possible," Young said.
'For always'
Hulsy's parents want to protect her, but they also want her to have fun and experience the world.
As a family, they go to Disneyland and out to eat. They try to live as normal a life as possible.
"She's taught me so much," her mother said. "I think we're very blessed and more fortunate than people who have typical children.
"She's going to be with us for always."
If you think your child might have an autism spectrum disorder, these local groups and organizations can help you find services and support:
Kern Regional Center 327-8531
Kern Autism Network kernautism.org or 588-4235
H.E.A.R.T.S. Connection 328-9055
Kern County Superintendent of Schools Search and Serve 636-4817
Autism spectrum disorders include five different diagnoses that all have certain characteristics in common, such as problems with socialization and communication.
Cases range from mild to severe. Children and adults with milder cases can excel in school, hold jobs and get married. Those with more severe cases can’t talk or function independently.
The five autism spectrum disorders are:
• Autistic disorder
• Rett’s disorder
• Childhood disintegrative disorder
• Asperger’s syndrome
• Pervasive developmental disorder not otherwise specified
Source: Diagnostic and Statistical Manual of Mental Disorders-IV-TR