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The challenges of keeping autistic child on task

Hernando Today correspondent

Published:   |   Updated: April 13, 2014 at 03:29 PM

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EDITOR'S NOTE: This is the second in a series of four stories focusing on autism that will be featured in Hernando Today's Health & Fitness section during the month of April, which is Autism Awareness Month.

Jacob Kingsbury has an extremely high IQ for an 8-year old. Now in second grade, he is at the top of his class, making strides that seemed impossible a few years ago. And when most people meet him for the first time, they find it hard to believe Jacob was diagnosed with autism spectrum disorder (ASD).

His parents, Dave and Amanda, said their son was relatively nonverbal, displayed hand-flapping, aversions to certain food textures and tastes, and had some behavior issues that are common symptoms of autism. He initially was diagnosed with pervasive development disorder (PDD), and attention deficit hyperactivity disorder (ADHD) because of aggression and combative behavior.

Because he struggled with communication, Jacob often became frustrated. Autistic children often have difficulty processing information and Jacob didn't have strong coping skills. "When he got angry, he would hit or bite because he couldn't speak," Amanda said.

She recalled a few years ago when she read a summary of Jacob's documented outbursts in class, not knowing what she was reading was about her own son. "I remember thinking, 'This poor mother,' not realizing I was reading about Jacob."

Because of his superior intellectual ability when compared to other children his age, Jacob finally was diagnosed with Asperger's syndrome, a high-functioning form of autism. And once placed in an academic setting tailored to his unique brain chemistry - Entirety K-8 in Brooksville - Jacob began crawling out of his shell.

It hasn't been an easy ride, Amanda said. Jacob's behavior is tempered by medication, something neither parent wanted to begin. But they were convinced it was in his best interest to help calm his brain so Jacob could learn to stay on task.

"It's a double-edged sword," Amanda said. The medication causes side affects including loss of appetite, weight loss and constipation. But it gives Jacob a chance at a better life.

And these parents have a relationship with their son they might not have had otherwise.

Since opting for medicine therapy, along with a new school that caters to children with neurological disorders such as autism, dyslexia and ADHD, Jacob has improved dramatically, his parents say.

The Kingsburys are divorced but share custody and strive to stay parallel with schedules and routines. They both agree there often are bumps in the road. Raising an autistic child, even one with high functioning Aspergers, poses challenges for parents and educators.

Dave said his son basically is a typical 8-year-old . He and Jacob's paternal grandmother, Lee Cone, take Jacob everywhere they would any other.

"Now he talks so much, you sometimes can't stop him," said Dave.

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Jennifer Lambke, director and founder of C.A.U.S.E., a local support group for families living with autism, raised a daughter with Aspergers syndrome. Devin, 17, was diagnosed nine years ago when autism awareness was in its infancy.

Like Jacob, Devin struggled mostly with behavior because her intellectual capacity was well above her contemporaries. Her most difficult years began in elementary school and extended into middle school, before her mother was able to get Devin in a private education center, Hope Youth Ranch, in Pasco County. Devin began eighth grade at Hope and is a different child, her mother says.

"They basically saved her," Jennifer said. Devin was misunderstood in a public school setting, forced into time-out rooms and restrained when she had emotional breakdowns. No longer legal, partly due to Jennifer's involvement in getting laws changed, Devin had bounced back from her difficulties.

"I don't blame them," Devin said, reflecting on those years. "They made me stronger."

Devin credits her mother for changing how children with autism are treated.

Jennifer, who tells stories of turbulent times when Devin was growing up, is quick to sing the praises of her only child for the strides she has made. Now excelling at Hope Youth Ranch, Devin looks out for the underdog.

She has an understanding of the autistic brain and often is asked to step in and help sooth a younger student who might be having difficulty. "I understand them," Devin said.

Devin is a social butterfly, said Jennifer, although she doesn't do a lot of the "girlie" things. She is involved at her school, volunteers for a local cat rescue and participates in Top Soccer for children with special disabilities.

Devin hopes to attend special classes at the University of Florida and work with autistic children, while continuing to pour her passion into rescued animals. She can converse with anyone, is quick to offer help and comes up with thought-provoking thoughts about life from the perspective of someone who has struggled with but now thoroughly loves the person she is.

Both families say their journeys are dotted with obstacles at times. But the rewards of parenting Jacob and Devin are limitless.

"We just refused to give up on Jacob," Amanda said.

Jennifer added that it takes a tremendous amount of support to raise a child with special needs. Without her husband, Brian, and family, she said, she could not have made it through some of the rougher moments while Devin was growing up.

C.A.U.S.E. meets the first Friday of each month at Hope Youth Ranch and the third Wednesday of each month at Baycare Behavioral Services on Cortez Blvd.

"I didn't want anyone going through what we went through," Jennifer said.

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