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Autism is a 'lifestyle adjustment,' and a blessing, By Erica Opisso Staff Writer
The Ponte Vedra Recorder, Friday, June 15, 2007
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Todd, Payton and Lori Barfield enjoy a quiet moment in their Odom’s Mill home. Photos by Jesse Jones |
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Five-year-old Payton Barfield was diagnosed with PDD-NOS, or Pervasive Developmental Disorder, Not Otherwise Specified, in November 2006. Payton’s parents have enrolled him in numerous therapies. |
It's another trip to styrofoam city for the Barfields.
They could be enjoying a meal at a local eatery for a weekend treat, but the Ponte Vedra family of four hasn't been in a restaurant together in years-not since Payton, now five years old, began having meltdowns.
About five a day to be exact, when screaming, crying and flailing was a normal routine for the handsome blond boy with bright blue eyes.
So it's take-out tonight-or styrofoam city as the Barfields call it.
Going grocery shopping, to the mall or out to a movie are also out of the question and, for Payton's father Todd, "it's the little things like that" that make his son's autism a force to be reckoned with.
"It's a lifestyle adjustment," said Todd, president of HavenTrust Bank. "Once you come to grips with it, you modify your life and focus on things that you can do that don't present a social catastrophe."
So their Odom's Mill home has become Payton's playground. A bouncehouse sits on the porch because Payton loves to jump. Cabinets that are low to the ground are secured with baby locks so that DVDs won't be strewn all over the house.
"We've lived our life with Payton on eggshells," said his mother Lori. "But we know his trigger points."
For the one in 160 children who are diagnosed with autism or autistic tendencies, the early signs of the disease may begin with the same symptoms.
Around age two, Payton hadn't hit milestones like crawling, walking or the beginnings of speech.
Doctors said he would catch up, but the Barfields still felt that their second child was growing up differently than their first. Graham, now 13, will be a Landrum Middle School eighth-grader next year.
"We knew from the beginning that Payton was different, but we couldn't put our finger on it," Lori said. "He just acts miserable, like he's not comfortable in his own skin."
The Barfields immediately found their son occupational, physical and speech therapy, but they still couldn't find a physician who could determine what was causing their son's developmental delays.
In November 2006, the Barfields got a diagnosis from a local doctor that labeled Payton as a high functioning, yet mildly autistic, child with PDD-NOS, or Pervasive Developmental Disorder, Not Otherwise Specified.
The severity of autism varies with each child-many never speak, while some learn to express themselves with sign language or eventually words.
Other children fixate on repetitive mannerisms such as flapping their arms or spinning a top, while other exhibit those characteristics only some of the time.
The news is still fresh to the family, and Lori blinks away tears when she thinks of the years of doctor visits and sleepless nights.
"With me, it was denial," she said. "It took me this long to say what Payton has. After you get off your pity pot, and since we know what it is, we don't want to look at a label but rather deal with the symptoms."
Such is the outlook of physician Jerry Kartzinel of Pediatric Partners of Ponte Vedra, whose patient base ranges from Australia to Africa and includes some celebrities.
"I don't treat autism," he said, "I treat the problems that come to me, whether it be a child with a broken arm, chronic diarrhea or obsessive compulsive disorder."
It was Kartzinel who placed Payton on a gluten- and casein-free diet, which eliminated all dairy and wheat, barley and oat products from the child's diet.
As a result, Payton's five-a-day meltdown quota was reduced to one.
According to Kartzinel, most autistic children's bodies produce a morphine-like substance, possibly derived from foods high in gluten or casein. The undigested molecules can "cloud the brain" and leave children in a fog, making for a "distant kind of kid, kind of like they are stoned," he said.
Stomach pain from irregular digestion paired with a lack of melatonin-which Kartzinel said is common for autistic children-means many of his patients rarely sleep through the night.
And if parents tell the doctor that "he just doesn't understand" how hard it is, he replies that he does-his fourth child, Joshua, is autistic.
"My son teaches me the most. It sets me apart," Kartzinel said. "If it didn't happen to my son, I wouldn't be here for patients all around the country. Autism is treatable and you can turn things around and turn a tragedy into a blessing."
The Barfields know that Payton is a blessing, especially since his birth was high-risk. He was born six weeks premature.
"Every child is born not typical, God does not makes mistakes," Lori said. "With all of his issues, he is not a mistake."
Payton's speech has progressed from the use of baby sign language to short sentences, a bit unintelligible to strangers but clear to his family.
Feeding himself is not a problem, but fine motor skills such as those required for writing might take another year or so.
Next year, he will begin kindergarten at Ocean Palms Elementary School in a mainstream class.
He's been attending the school's program for students with autism spectrum disorders, but the Barfields say Payton's integration into the kindergarten class was a "huge answered prayer."
Since he was diagnosed as high functioning, Payton's time in the classroom will allow him to interact with his peers and still receive the personalized attention of an Individual Education Plan.
For now, the Barfields are enjoying their summer. Graham is busy playing baseball with the Ponte Vedra Athletic Association, something Payton might be able to do as well.
Barfield said the PVAA's Rising Stars Developmental League will give his son and other children with developmental delays a chance to participate in a healthy, fun pastime.
"He's been wanting to play baseball from watching his older brother," Barfield said of Payton. "Now that he's old enough to play T-ball this fall, he and I can have some more time together."
Upcoming golf tournament, gala to raise funds for autism
"All of a sudden, a tsunami wave came out of nowhere and crashed on the shore of the United States," said Leslie Weed of what she calls an "epidemic" of autism in young children.
Her own nine-year-old daughter, Lanier, was diagnosed as autistic seven years ago, after she lost motor ability, became highly agitated and "retreated into a fog," Weed said. "I saw her slip through our fingers,"she recalled.
From that day forward, Weed and her husband Bobby, of Weed Golf Course Design, focused on getting their daughter the therapy and care she needs.
But now it's time for them to help other local families.
This June 28 and 29, proceeds from a "Valley of Dreams" charity event will benefit HEAL (Healing Every Autistic Life), a non-profit foundation the Weeds began in 2004, in collaboration with physician Julie Buckley of Pediatric Partners of Ponte Vedra.
Actress and model Jenny McCarthy-whose four-year-old son has autism-is guest host of the event, hosted by TPC Sawgrass.
Activities include a dinner gala and auction on Thursday, June 28, in the TPC clubhouse and the First Annual Bobby Weed/Pete Dye Charity Classic golf tournament on the renovated Dye's Valley Course.
David Pillsbury, president of PGA Tour Golf Course Properties, said that, through the design process of the Valley Course by Pete Dye, Weed and player consultant Jerry Pate, he learned of Weed's daughter and the family's challenges with autism.
Pillsbury said the HEAL foundation was a perfect match for the PGA Tour's Adopt-A-Charity program, which pairs grass-roots fundraising with TPC clubs.
"The magic of this relationship," Pillsbury said, "is that all of us feel a tremendous sense of humility and pride for each other. We want the charity to maximize the use of our property."
And that's just what Weed plans to do.
"I know they handed me a piece of gold and I'm going to get so much shine out of this," she said. "We want to make Ponte Vedra and Jacksonville a prototype that many cities follow. We will be a destination people come to get their children help."
To find out more about HEAL, log on to www.healautismnow.org or contact Leslie Weed at 285-5651.
This story can be found here on PonteVedraRecorder.com.
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