By Marlena Hartz
When their baby reached 16 months of age, Diane and Aaron Mains began to worry. He hardly ate and slept in fitful intervals. His attempts at speech were minimal and difficult to decipher.
The couple learned two months later the strange symptoms were the result of a regulatory disorder, a cluster of characteristics that include sensitivity to sensory stimulation, poor sleep cycles, fussiness, and dislike of change.
“We were actually kind of relieved,” said Mains, a father to three.
“We were initially told Lane might be autistic,” he said. “Regulatory disorder is a relatively new term, and the disorder is treatable. Typically, children diagnosed early do quite well.”
Lane, who turned 3 this spring, has done well. He is overcoming his extreme sensitivity to certain foods, has increased his vocabulary almost twofold, and is learning how to adjust to new places and faces, according to his father.
But he didn’t do so alone.
He and his parents enrolled in the early childhood intervention program offered through ENMRSH, a nonprofit organization funded by the state Department of Health. An occupational therapist, along with other specialists, have worked one-on-one with their son, in their home, for about two years.
About 250 children, ranging from infancy to age 3, are enrolled in the program. Of them, about 60 have been diagnosed with a regulatory disorder.
A wide range of children are eligible for the program, including those with syndromes, chronic ear infections, or those born prematurely, said Erin Wood, director of the ENMRSH Early Childhood Development Program. The program serves five counties: Curry, Quay, De Baca, Roosevelt and Guadalupe.
Commonly, children are referred to the program through a school staff member or a doctor. But ENMRSH also offers free screening to determine whether or not a child qualifies for their free services, Wood said.
The experts who staff the Clovis facility caution that if overlooked simple developmental problems — traced sometimes to a regulatory disorder and sometimes to other problems — can lead to a constellation of problems later in life.
But many times, developmental problems can be trumped by early treatment.
Lane, for instance, had a deep aversion to mushy foods, his ENMRSH occupational therapist Angel Laumbach-Kirk said. To rid him of the prejudice, she feeds him applesauce, soup and other soft foods. The more he eats such foods, the less dramatic his reactions to them become, she said. He no longer squirms or erupts into tears when meals consist of applesauce and the likes, Laumbach-Kirk said.
“It takes a lot of patience and understanding when there is a regulatory problem,” Laumbach-Kirk said. “There is just a different wiring there … Lane is highly sensitive to everything.”
Some children with regulatory disorders suffer an oppostie fate — they are not sensitive enough to their environment.
By introducing Lane to bright lights, certain sounds, and an array of textures — over and over again — they become less and less offensive to him and other children with regulatory disorders, Laumbach-Kirk said.
Too often, however, developmental problems are shrugged away, or labeled stages, said ENMRSH experts. Then, “suddenly, they are the kid who pushes everyone in the school line, or can’t sit still at their desk,” Laumbach-Kirk said.
When children exhibit signs of developmental delay, “parents tend to wait too long thinking things are going to get better,” Wood said.
The oversight can be costly. The early intervention program cannot serve children far beyond their third birthday, Wood said.
“You don’t want a developmental delay to grow into a habit. Every skill is a building block upon another,” Wood said.
“It has nothing to do with intelligence. It can,” Wood said, “but most of the time these are bright kids who just need to be taught how to catch up in their skills.”