Monday, Nov 24, 2014
Health

Mother of autistic son ready to help others facing struggle


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Raising a child with autism, while challenging, is somewhat easier today than a few years ago when little was known about the neurological disorder that affects one in 68 young people.

Parents, guardians, physicians and educators were left with few answers, and they had to fight for services that weren't abundant and tolerance that was dwarfed by the ignorance of a society left dumbfounded.

Those children now are adults, and their knowledge, combined with their support systems, can help guide the way for a new generation battling the challenges of autism spectrum disorder.

Margie Garlin, the parent partner for the Center for Autism and Related Disabilities at the University of Florida, understands the difficulties an autism diagnosis presents. While she works with parents to help ease their burdens in a endeavor requiring undaunted commitment, Margie's main core of experience came from living with autism. Her son, Bryan, now 22, was diagnosed with pervasive developmental disorder - a low-functioning form of autism - before he was 3.

"I knew something was wrong from about 3 months old," Margie said. Bryan was too fussy to nurse and Margie was forced to pump her breast milk. "I thought he had colic," she said. But that theory was doused by her pediatrician. Breast-fed infants rarely develop colic, she was told.

Other quirky behaviors, such as no eye contact and nonengagement during typical early childhood games like peek-a-boo, led to Bryan being screened for abnormalities.

"I worked in child development, so I was looking for these things," Margie said. "By the time he was 10 months old, I knew and my heart was sinking."

The process was lengthy and included a nurse practitioner, an early interventionist/psychologist, Early Steps and a speech pathologist. After a few months of analysis and testing, Margie learned her son had autism.

"I cried," she said. At that time, only one in about 10,000 children were diagnosed with the pervasive neurological disorder.

Bryan survived elementary school in Alachua County and, after moving to Hernando County, entered West Hernando Middle School and graduated from Central High School with a special diploma. "I was known as 'the mother from hell from Alachua,'?" Margie said with a laugh.

But she took her role as Bryan's advocate to the extreme. She pushed for services that no other child had received - including several qualified one-on-one aides - armed herself with knowledge about Bryan's rights and built an expectation for her son that not only was realized but also exceeded even her own logical hopes for his future.

Now a handsome 22, Bryan towers over his mother with a 6-foot-tall frame. He is communicative, self-reliant and embarking on a future that hopefully will include community college and a graphic design degree. "It will take him some time, but he will get it," Margie said.

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Jerry Boutot, also 22, works diligently twice a week in his father's office in Spring Hill. Highly intelligent and a master of creative cartooning, Jerry is animated, engaging and passionate about his talents. When Jerry speaks about his journey, his eyes light up and his face beams. His father watches with pride.

Like Bryan, Jerry wasn't talking and showed repetitive and self-stimulatory behaviors that alerted his parents something was wrong. Jerry was diagnosed with Asperger's syndrome, a high-functioning form of autism.

Jerry Boutot Sr. spoke of his commitment to his son's progress, recognizing Jerry's exceptional ability with a game controller that led to the discovery of his deep technological and artistic passions. He encouraged Jerry to mold his ability into a marketable skill.

The younger Jerry is the creator of his own cartoon series, Simon and Adrien, that he posts on YouTube and on his website, Simonandadrien.com. Many of the comical and creative episodes began with strip drawings in high school that he transformed into original computer art. His father is helping Jerry create a book that can be viewed online or bought in hard copy.

The elder Jerry told stories of his son's quirky behavior that blended into an amazing grasp of technology. He mastered any video game in just hours, signifying to his father the importance of identifying his particular passions and supporting those. The elder Jerry also highlighted the importance of modeling self-organization in his son, who works part-time at his father's business, AppDataWorks, and a couple days a week for ARC.

The elder Jerry echoed Margie's advice: Becoming the most important advocate in a child's life is the best way to survive a diagnosis of autism. He and his wife fought a school system that wouldn't have given as much support to their son had they not equipped themselves with knowledge about Jerry's rights.

Both young men are excelling with their gifts, supported by parents who never gave up and continue to fight for their sons' best interests.

Margie, who helps other parents build a support plan no matter where their child fits, is an advocate not just for awareness but also for acceptance of an increasingly prevalent disorder.

"A journey of a thousand miles begins with the first step," said the elder Jerry.

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