HALLOWELL — A rustle in the crisp, autumn leaves was followed by a sudden shriek. 

With a baby in his arms, Justin Cobb, the Hallowell father of four, tried to run across the backyard to 3-year-old, Luther. But Linus, 5, clung to his father’s leg, wanting to be held. 

Justin Cobb put down the baby, Lochlan, 1, in order to help Luther. Linus, meanwhile, pulled off his jacket. 

“Buddy, it is cold,” Justin Cobb told Linus. 

It was the kind of fall day that reminded the Kennebec River community that winter was close. Linus pulled off his T-shirt and ran from the dropped clothing.

It could have been a hectic afternoon for any parent of young children, but this what parenting was continuously like for Justin and his wife, Suzanne, who was inside that afternoon working, now that she is the single provider for the family.

Three of the four Cobb boys are autistic. Recently, the Cobb family made a nearly 3,000-mile car trip across the country in search of new treatment methods for the autistic children. They returned earlier this month more hopeful as they search for help and answers. 

“For certain, it is a story full of struggle and desperation,” Justin said. “It is also one of such intense love, hope, bravery and faith.”

On a recent fall day, Lorenzo, 13, came through the gate into the backyard.

“Dad,” he said, “I need help with the pedal on my bike.”

“Not now,” Justin replied. “I need help with your brothers. Keep an eye on Luther.”

Justin dipped to grab the two pieces of clothing Linus had dropped, then looked around for his son. As he scanned the yard, his eyes stopped on the baby.

“What do you have?” he asked Lochlan, who looked into his father’s eyes and grinned.

Picking up the baby with one hand, he shook out the shirt with the other. As he tried to redress Linus, Justin continuously scanned the yard, checking his four children.

“This is what it is like,” he said, “except usually there is less clothes.” 

Then he darted away to where Luther was out of sight behind a tree. 

Luther and Linus are low-functioning. Their eye contact is minimal and they are nonverbal.

“These guys have a little bit (of language), a few words, but they sort of just drifted off,” Justin said. “They are stuck.” 

A gifted painter in seventh grade at Hall-Dale Middle School in Farmingdale, Lorenzo is high-functioning, Justin said, but he struggles to remember things. 

“We think the baby is OK,” he said, describing the benchmarks Lochlan had attained, including making eye contact, which he thought was exceptional.

“The odds of having three kids with this is just not even normal,” Suzanne said. 

It leads Justin and Suzanne Cobb to ask why this has happened in their family.

The boys had complete genetic testing, Suzanne said, and the results were normal and negative. Without genetics causing the autism, she believes it is environmental. 

Suzanne has offered several theories for why her family has been touched so significantly by autism: Exposure to pesticides (Justin had worked for an athletic field supply company); lyme disease (Suzanne contracted the disease before her pregnancy with Linus); breast-feeding (she breast-fed the baby fully, her oldest child some and Linus and Luther very little); diet; and more.

None of this was conclusive. 

Suzanne said the family has seen many doctors “who toss their hands in the air about what to do.”

“They are treating this as a mental health problem,” Justin said, “not a medical problem.”

Specifically, they believe it is a gut health problem. 

“The brain gut theory has been around for some time now,” said Cathy E. Dionne, executive director of the Autism Society of Maine, referring to science showing the brain has a direct effect on the stomach and intestines, and vice versa. 

In researching how to help her sons, Suzanne came across the Nemechek Protocol. Dr. Patrick Nemechek specializes in the autonomic nervous system and repairs autonomic dysfunction. 

Autonomics control the entire body, so the disorders cause the brain to not properly control functions of the body, including digestion, sleep, the immune system, and blood pressure, according to Nemechek’s website, so “autonomic disorders are involved in childhood illnesses, such as ADD and Autism, and our emotionality, such as anxiety, depression and PTSD.” 

The logic made sense to Suzanne and Justin Cobb, and the testimonials showed families whose children’s symptoms were reversing. 

The family started following the protocol, which reportedly repairs the autonomic nervous system by reducing inflammation and preventing propionic acid that leaks from the colon into the small intestine, according to a Nemechek video, “Recovery of Autism Spectrum Disorder, Developmental Disorders with the Nemechek Protocol.”

The Cobbs started following the protocol this spring, based on a book regarding autism, and say they saw differences in their children.

Off the plan, Suzanne said, Lorenzo would present repetitive, obsessive, compulsive behaviors. On the protocol, he learned to ride a bicycle and he made other gains. Linus, meanwhile, would not try many foods before the protocol, but now eats many things, she said. And Luther’s communication skills and eye contact are developing.

“There certainly is much work being done within the field to look at digestion, mitochondrial disorders, etc. in children with autism,” said Michelle Hathaway, director of the Margaret Murphy Centers for Children, which has facilities in Lewiston and southern Maine and serves children with autism and other developmental disabilities.

“For some children with autism, there appears to be a host of co-occurring medical concerns, whether that includes gut health, digestion, etc.” 

Such alternative treatments, though, are not without controversy. The U.S. Food and Drug Administration has warned against products or treatments claiming to cure autism, saying on its website that such treatments can be “deceptive and misleading, because there is no cure for autism.”

“The same is true of many products claiming to ‘treat’ autism or autism-related symptoms,” the FDA wrote. “Some may carry significant health risks.”

Hathaway said she could not comment on the Nemechek Protocol sought out by the Cobb family, but said she has “seen many families taken advantage of as they seek therapies that often come with anecdotal support and testimonials.”

“Pseudoscience and false science and promises often attract families as they seek out the very best and most-positive treatment options for their children,” Hathaway said.

Suzanne and Justin Cobb believe California and other western states are ahead in treating autism, and Maine is lagging in this area.

The Cobbs’ decision to become patients of Nemechek meant a trip to Buckeye, Arizona, which is more than 2,800 miles from central Maine.

This created thousands of dollars in expenses — for travel and treatments — for a family whose budget was reduced when Justin left his job to care for the children.

This decision also tested the entire family’s patience and “sanity,” especially when the six of them — and their luggage — were crammed into an SUV as they headed west.

It would have been a year before the Cobb family would have gotten an appointment, but a cancellation created an opening shortly after Thanksgiving. 

The trip proved arduous: In Buffalo, New York, the Cobbs encountered a blizzard. In Missouri, Lorenzo passed out and was taken by ambulance to an emergency room, where he was treated for dehydration. He and the baby also had the flu.

Throughout the journey, the couple took many toys to the back of their heads — most of them tossed by Luther.

“I am proud of us, but I think we are nuts,” Suzanne Cobb said after returning to Maine in mid-December.

While it was too soon for the family to know how the effort might have affected their children, Suzanne said the journey was not so much about autism as it was about “not giving up.”  

“It does not matter if my kids were in a cancer state or an autism state,” she said. “It is about looking for answers until you get to where you need to get.”

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