Friday, March 30, 2012

Dancing with Diesel

A mother shares her experience of raising a son with autism in the Wood River Valley


By JENNIFER TUOHY
Express Staff Writer

Courtesy photo by Kristy Ambrogio From left, Sailor, William, Diesel, Jette and Kory Ward outside their home in Bellevue. The family has been pleased with the efforts of the Blaine Country School District to help with Dieselís autism diagnosis.

Despite the gray and dreary day outside, the classroom inside Woodside Elementary School is full of laughter and energy. At its center a woman with a mane of curly black hair waves her arms in time with an infectious beat and belts out "Dance! Dance! Dance! Dance with my whole body!"

Around her, children gyrate to slightly different beats, each doing so with a broad grin on his or her face. In the corner, a boy sits at a computer with an expression of intense concentration on his face as he masterminds the audio for this spontaneous performance.

Suddenly one boy drops to the floor, his bright green shirt flashing on the dull carpet as he break-dances. He leaps back to his feet and a cheer rises up from the room.

Music teacher Dorinda Rendahl continues singing, this time shouting "Dance!" followed by a name as she gets up close into each child's face. It is a strange sight, seemingly intrusive. But it works. It keeps them engaged, happy and active—because all the children in this room have autism.

According to a report release yesterday by the Centers for Disease Control and Prevention, 1 in 88 American children (1 in 54 for boys) has some form of autism spectrum disorder—a 78 percent increase compared to a decade ago. To tackle this exponential increase, the Blaine County School District has reimagined its K-5 Autism Spectrum Disorder program, and Rendahl's infectious energy is just one piece in the puzzle that is figuring out how best to help the autistic children of the Wood River Valley.

Among the heads bobbing along to Rendahl's music is a curly blond one belonging to 6-year-old Diesel Ward.

When Diesel was 18 months old, his mother, Kory Ward, started to worry about his development. While all mothers compare their children to others the same age, Ward had a clear means of comparison constantly in view—Diesel's twin sister, Jette.

"It was easy to compare them side-by-side," Ward said. "Diesel was not meeting the same markers as Jette. My gut was telling me that there was something different."

By 20 months, she had him in speech therapy services, and at 3, he was placed in the developmental pre-school at Woodside Elementary.

"At that stage he was just being treated for speech and language delay, but I knew there were more ... interesting quirks that hadn't fully come to the surface," Ward said.

After a visit to a local park, that gut feeling started kicking hard.

"Instead of choosing to play on the play structure with the other kids, he took his grandfather by the hand and walked him around the entire perimeter of the park, checking out different things, things most kids wouldn't normally look at," she said.

A behavioral specialist soon put the official stamp on Diesel's situation. He was on the autism spectrum.

"We got the diagnosis we were expecting," she said. "There was no surprise. But ultimately it helped me through the process of acceptance."

Ward is often asked if she ever wonders about how or why this happened to her son.

"People have asked me this a lot," she said. "People want to know if I feel like if I didn't vaccinate would this have happened."

But Ward said she doesn't think about why.

"It's just not important to where we are now," she said. "It's not going to change Diesel, it's not going to change our life at all. This is the hand I've been dealt and I'm going to make the best of it."

The ASD program is intended to tackle the daily challenges facing Ward and other parents in the valley with young autistic children. While there has been an autism program in place at Woodside Elementary for a while, this past school year has seen some significant changes. The program has gone from being on the periphery of the children's education—a room they are taken out of class to be sent to and "engaged with"—to being the center of their educational experience.

"Everything is needs based," explained Sara Polk, who leads the program along with Mike Stemp. "We don't have a program that kids fit into, we designed our program around each one of our kids.

"The big picture is that students with autism really need constant engagement, and not from a distance," Polk said. "They need someone to get into their world, and that doesn't happen in a large group. These kids don't learn through osmosis. Every moment they are not pressed to be thoughtfully engaged is a wasted moment."

While the program caters to all children in the school district who have autism, those most in need of "regulation" are placed in Polk and Stemp's classroom year-round.

The word "classroom" is a bit misleading—in fact, the program occupies more than six rooms, all designed to help regulate the children. They include a sensory room, a music room, a kitchen, a classroom, a lounge and the offices of occupational therapist Susan Cooper and speech language pathologist Maura Pfeiffer, who are an integral part of the ASD program's team.

"Regulation is all about being emotionally available for learning," explained Polk. "There's this band. Up here on the band is over-stimulated, and then down here is where a child like Diesel spends a lot of his day. So we have to up-regulate him, but most of the kids we have to down-regulate."

Regulation is a constant dance, but when the team can get the child into the center of that band, that's when they can connect with them.

Diesel is one of the eight children who currently spends all of his time in this "core group," as Polk calls it.

"Our core kids are those that don't spend too much time in that band—in that emotionally regulated state—without a lot of facilitation from these four people all day long," she said.

While Diesel doesn't have the type of ASD behaviors that might have a teacher in a regular class-setting pulling his or her hair out, if he were in such a setting he would just sit quietly, absorbed in his own world, with nobody realizing that nothing was going in.

"A lot of parents want their kids to be normal," Ward said. "But normal is such a strange term. Typical is a better word. They want their child to do typical classroom things, but to me if they're not getting anything from those so-called typical moments, then it's not going to make them typical. Putting a child into a classroom and thinking they are being typical is not necessarily the best solution."

So far, the solution the creators of the ASD program have come up with seems to be working.

"This year we've really been able to dig in and do some solid work [with these children]," said Woodside Principal Brad Hensen. "Previously, it was more of a patchwork solution."

Ward is also excited by and pleased with the program.

"Now Diesel doesn't just have a teacher, he has a team," she said. "When he comes home you can tell he's tired, that he's been pressed all day, to be in it—to have those social skills fully engaged all day."

The activity and energy in the ASD program is infectious, and while there are obvious signs of the challenges and difficulties faced by those with autism, it's possible to get a glimpse into Ward's positive perspective on what many view as a very dark diagnosis.

"There's nothing wrong with the way Diesel is," she said. "His diagnoses or his differences—we don't like to call them disabilities—allow us to stop and slow down and take a look at life through a different lens. Sometimes it's so eye-opening for us, because he just has a different way of viewing things, hearing and seeing things. His sharing those ideas with us makes life pretty special."

jtuohy@mtexpress.com

Local resources for children with autism

- Sun Valley Adaptive Sports—svasp.org

- Blaine County School District's Parent Information Center—578-5436, blaineschools.org/Sites/SpecialEdPIC

- Sagebrush Equine Training Center for the Handicapped—sagebrushequine.org

- Children First (support group for parents of special needs children)—720-0955

- Autism Speaks—autismspeaks.org

Promote Awareness of Autism

April is Autism Awareness Month, and on April 2, Autism Speaks will launch its Light It Up Blue campaign (www.lightitupblue.org). In its third year, this global initiative sees iconic landmarks around the world—including the Empire State Building, the Paris Stock Exchange, Christ the Redeemer in Brazil and the Sydney Opera House—lit up in blue to increase awareness about autism.




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