It was early spring in 2007 when Jill Campbell began to watch helplessly as her son seemed to slip through her fingers.
She and her husband Craig made the trek to Disney with their three children. Family photos show two glowing parents, one grinning teenager, a tiny tike of a baby girl and a two-year old boy who was somehow completely unaware of the camera.
“I couldn’t even get him to take a photo,” Jill remembered. “I had to shout his name to get his attention, so I thought maybe something was wrong with his hearing.”
Jill said from birth, all of her son’s functions had been normal and he’d met all the developmental milestones of a typical infant. So, the Campbells scheduled an appointment with a neurologist to help diagnose their son’s condition, but their efforts were to little avail.
“We basically had to force a diagnosis out of the doctor,” Craig, Sr. explains. “They told us, ‘Well, everything else is ok, so he’s probably autistic’.”
The unimaginable journey that followed is one of courage, determination, faith and unstoppable love for their son.
Jill returned to the couple’s home in Key Largo and researched autism on the Internet for roughly eight hours a day.
“He didn’t speak or make eye contact with me for four months,” Jill explained. “I was so desperate for a glimmer of hope.”
What her research revealed was a whole network of doctors and parents of autistic children. The online resources, Craig said, gave the couple hope their “mainstream” doctors could not provide.
The couple first found Early Steps, a government funded program that provides screening and services for developmentally disabled children from birth to three years old. Though the program offered some sort of treatment option for the family, Jill and Craig agreed that 30 minutes of occupational therapy each week was not going to be enough to bring their son up to speed.
Additional Internet research turned up an online network of mothers that had posted a gluten and casein free diet for toddlers. Within two days the new restricted diet, her son uttered his first word she’d heard from him in months.
“I was walking out the door, and said ‘Oh, I’ve got to go back in and get something’ and he looked at me and said ‘back’,” Jill remembered.
Though the diet proved a step in the right direction, the couple said their son was also “angry as hell” and described his withdrawal from wheat and dairy products as akin to morphine withdrawal.
“These chemicals trigger the same part of the brain as opiates,” Craig explained.
The couple quickly launched into an in-depth discussion regarding what has become a challenge for the whole family to overcome. He is the owner of Tropical Island Vending and she is a Food and Beverage Supervisor at the Hilton, but their explanations are so medically technical in detail.
“People think autism is like Downs Syndrome, which has been proven to be a genetic disease,” Craig said. “Autism is a direct result of environmental factors.”
Several biomedical factors, like increased levels of yeast in the stomach, heavy metals in the bloodstream and inflammation, the Campbells believe, have contributed to their son’s condition. Jill recalled that her oldest son, Anthony, 17, only had 10 vaccinations between birth and age 5. Craigee, as they call him at home, received a whopping 27 vaccines before the age of 2.
“Doctors do not have a safe schedule for vaccines,” Jill said.
Five days a week, Jill or Craig picks up their son from Key Largo School and drives him to Miami for two hours of one-on-one therapy at the University of Miami-Nova Southeastern Center for Autism and Related Disabilities. They’ve also located a DAN! (Defeat Autism Now) doctor on the mainland to help with Craigee’s treatment.
In addition, the couple shelled out $20,000 for a hyperbaric oxygen chamber that helps stimulated the blood capillaries in their son’s brain. Their health insurance, for which they pay $2,400 a quarter with a $3,800 deductible, does not cover any of their son’s treatment. She’s a licensed real estate agent, and the couple is currently facing foreclosure on two homes.
“We’re broke,” Jill said plainly. “But the good news is that he’s healthy.”
Nothing could have prepared the couple for the life-altering challenges of raising an autistic child. Craig said he is currently aware of at least 50 families in the Upper Keys alone that have autistic children.
The online parenting networks, Jill said, not only served as great resources of information but also of emotional support.
“There is an 80 percent divorce rate among parents of autistic children,” she said. “When we made the choice two years ago to spend every dime we had to help our child, we had to do it together.”
Each month, they have to decide between paying for therapy or paying their mortgage and credit cards.
Their battle has been uphill the entire way, so two months ago, they decided to form a non-profit called Autism Society of the Keys (A.S.K.) whose goal is to help families affected by autism. Through A.S.K., Jill and Craig will hold regular meetings to discuss topics like environmental toxins, vaccines, biomedical treatments, therapies and current events; provide a readily available network of support; and provide an outlet through which local families can apply for grants to help offset the cost of expensive autism treatment.
“At this point, we know we’re going through all this so we can share our experiences with other families.”
April is Autism Awareness Month. A.S.K. will meet Monday, April 20, at 6 pm at Key Largo Baptist (MM 106, across from Circle K).