Published: December 08, 2007 11:33 pm         

Strategies sought to help parents, teachers

FAIRMONT — Rrrrrrrrrrr. Daniel Barney makes the noise as he plays on the couch with his Doodle Pro, a toy that allows him to draw and write, erase his work and start again.

The noise imitates the elevator Daniel, 6, rode earlier in the day when he went to a clinic to help evaluate his eating habits, which differ from other children’s because of the sensory problems he experiences due to his autism.

Elevators fascinate Daniel. And the Doodle Pro is his constant companion.

“It’s his best friend,” said his mother, Julia Barney. “It goes everywhere with him.”

When Daniel was 4, he was diagnosed with autism, a condition characterized by impaired social interaction, problems with communication and sometimes repetitive or limited activities and interests, according to the National Institute of Neurological Disorders and Strokes (www.ninds.nih.gov).

Since then, Daniel has been in a variety of therapies to treat his autism symptoms, which can include a limited ability to communicate back and forth with others. At the same time, Barney and her husband, Chris, have had to learn how to deal with the disorder and often wonder what’s going on inside Daniel’s head.

Gadgets such as the Doodle Pro can aid them with that. For instance, an autism specialist explained to the Barneys that the device “helps us see inside Daniel’s head.”

The specialist showed the family a video called “A Is for Autism” in which images morph into the next one quicker and quicker.

“She said to us, ‘I think that’s the way Daniel’s brain works.’ We will be talking to him and he is listening and comprehending, but at the same time, he draws and writes on his Doodle Pro. It’s like the stuff in his head needs to get out and in some respects, doodling, writing and drawing is a way for him to organize his brain.”

Now Daniel can talk, string words together and respond to his parents. But before his diagnosis of autism two years ago, Daniel exhibited symptoms that his parents had trouble deciphering.

If his parents made animal sounds with him, he would be OK with “meow” and “woof.”

But when they got to “The cow says ‘moo,’” “He would cover his ears and scream,” Julia said. “Tears would roll down his face.”

He also had a reaction when his grandmother fed him and made “num num” sounds, and would run screaming to his room if his parents used the vacuum cleaner or food processor.

“That was the first thing we noticed, a certain sensitivity to sound,” Barney said. “He would respond as if he were in pain.”

Crystal Bennington, an occupational therapist who works with autistic children in Marion County, uses sensory integration — improving the way people organize sensory information — to help students such as Daniel.

“Children with autism will have sensory issues,” Bennington said. “Whether it’s avoiding things or craving certain things, we can give the parent or teacher strategies to use to eliminate something or help increase something. So if they are not eating certain textures, we can help the parent or teacher to help get the student eat more textured food.”

In addition to Daniel’s problems with certain noises, he also will avoid a variety of foods “tied to texture,” noted his mother.

“He eats no vegetables,” Julia Barney said. “He has totally excluded vegetables from his diet. Sometimes colors of food also matter, but textures have a big play in what he’ll eat and not eat.”

For instance, his mother said, “He’ll gag at green beans, peas, corn, carrots — he gags if he puts it in his mouth. So his diet has been limited in terms of vegetables.”

As for meat, he prefers smooth, processed types such as pepperoni and baloney. “He’d rather die than eat a hamburger.”

Jack Tinnell, 8, of Morgantown, also experiences sensory issues, noted his mother, Shannon.

“For a year and a half, we couldn’t go to the mall, because the fluorescent lights were too bright and he would melt down,” Shannon Tinnell said.

Like many children in Monongalia County with autism, Jack attends North Elementary, which offers a specialist. In fact, Shannon and Bob Tinnell, both natives of North Central West Virginia, lived in Deep Creek, Md., but moved to Morgantown because Jack needed a more accommodating school system.

At North Elementary School, teacher Marilyn Newcome works with Jack and other students using a variety of tools, including a device called a Picture Exchange Communication System, which allows autistic children to communicate more easily with photos of items that they can move around with Velcro.

“They may read, but pictures are easier,” Newcome said. “If Jack wants an apple or something to drink, he will take the ‘I want’ card and put it on the sentence strip and put a picture of an apple there and bring it to somebody.”

Autistic children in Marion and Monongalia counties have many resources available to them. In addition to schools with specialists — North Elementary in Morgantown and East Park in Fairmont — they also have the Autism Training Center North in Marion County, an offshoot of the Autism Training Center at Marshall University in Huntington founded by Ruth Sullivan.

As of September, the Autism Training Center offers a support group for parents and caregivers of autistic children. The group meets the first Tuesday of every month and has just moved to the Barnes Alternative Learning Center to accommodate the increasing number of people who attend. Anyone who wants more information on the group can call Bennington at (304) 612-9509.

“Every time it seems to grow more,” Bennington said. “We’re trying to get speakers in and we talk about topics parents are concerned about. It’s been really well received.”

The Autism Training Center also sends representatives into other counties to work with autistic people — usually children — and their parents, educators and anyone else with a large role in the person’s life.

“Ultimately, the role is to start facilitating a small team for that person,” said Andrew Nelson, an education specialist for the Autism Training Center who works in the Eastern Panhandle. He recently visited the Fairmont center, which serves as his base where he can get materials, do paperwork and attend monthly meetings.

Nelson helps determine the autistic person’s goals, he said, “And then from that we build a small team made up of family members, community members and school personnel to support that person in their achievement of those goals and dreams.”

Marion County also is one of the few counties in the state that employs a coordinator for autistic services.

JoDonna Burdoff, liaison for autism services in Marion County, only knows of two other of West Virginia’s 55 counties that has someone at the county level coordinating services.

“Our goal is to meet every student’s needs in their home school,” she said. “I would say that most of our teachers that are servicing children with autism are certified in autism training, which hardly any county can say that.”

About 40 children enrolled in Marion County schools have autism, Burdoff said. Six of them attend classes at East Park Elementary school with communication specialists in the hopes that by the fourth grade, they can be mainstreamed into their home district schools.

“We try really hard to keep them in their home school,” Burdoff said. “Only if they are on the severe spectrum do they go the communication classroom. Most kids are at their home school.”

Burdoff has been in autism education for 20 years after being hired out of college to do one-on-one training with an autistic student. She had a social studies degree.

“I had no experience with autism,” Burdoff said.

Things have changed dramatically since then, both in the number of autistic students — “Our population has exploded,” Burdoff said — as well as the amount of training given to teachers with autistic students and the way the system mainstreams most of the students into the classroom.

“My main focus is to make sure that the autism population receives appropriate education,” Burdoff said.

That can be tricky with a disorder that has symptoms that can be unique to different individuals.

Burdoff recalled visiting an autistic boy in Webster County who greeted her when she pulled up in her car.

“He ran out and looked at my odometer and asked where I had driven from, and he named every route possible that I could have taken,” she said.

When she got ready to leave, she told the boy she also had to go to Spencer and McDowell County. Then, when she returned to the boy’s house a month later, “He ran out of the door and told me how many miles I had driven since I had been there.”

And while “That’s less than 5 percent of the autism population” that exhibit savant skills, Burdoff said testing autistic students properly is difficult.

Likewise, the variety of symptoms autistic children can exhibit requires tailor-made education.

“There is no formula,” she said. “It’s a pie. One kid may need a big slice of this and a big slice of that. That’s the trick — finding out the formula for your kid. There is a lot of stuff out there.”

E-mail Mary Wade Burnside at mwburnside@timeswv.com.

     

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