Just after his second birthday, Michael Venable’s son, Kylan, stopped saying, “night, night.” In fact, he stopped saying anything at all.
“He was talking from about 9-months,” Venable said, “and then one day it just changed.”
It was one of the first signs to Venable and his wife, Amber, that something might be different about their child.
Later that year, Kylan was diagnosed with autism.
The couple, both Martinsville natives who were high school sweethearts, have spent the last five years raising an autistic child. Inspired by their own experiences and the help they found in the community, the Venables have organized an event, “Light it up Blue on 4/2,” in honor of World Autism Awareness Day.
The goal of the event, Venable said, is simple—bring awareness to autism and help parents recognize the signs.
“It’s such a range of different symptoms,” he said. “We’ll be educating parents” not only about what to look for but about resources that are available in Martinsville and Henry County to help.
According to the National Institute of Mental Health (NIMH), autism spectrum disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Those with ASD often have difficulty with communication and interaction with other people, restricted interests and repetitive behaviors, and symptoms that affect their ability to function in school, work, and other areas of life.
Generally, as with Kylan, symptoms appear within the first two years of life.
In addition to regressing verbally, Venable said Kylan’s behaviors changed. He developed a sudden interest in spoons, beating them on his own chest. His grandmother bought a drum set for her grandson, who played with the new toy, but “it wouldn’t be the normal tapping” you might expect from a 2-year-old.
“We paid attention to (the changes), but we didn’t know” those changes could be signs of a larger issue, he recalled.
The Venables called their pediatrician, Nurse Practitioner Lea Lineberry of Compassionate Care Pediatrics, who referred Kylan to the Children’s Clinic of Roanoke. Venable said that doctors observed him for several hours before diagnosing him with autism.
That diagnosis “was really hard for our family,” said Venable, who said it took him nearly a year to accept it.
“It’s just a tough, tough pill to swallow. It’s like the air is knocked out of you,” he said.
Kylan is now 7-years-old. His family, including older sister Kailyn, 11, and younger brother Kade, 3, adjust their activities to accommodate his feelings and sensitivities.
“We have to plan around Kylan,” Venable said. “If we go to a high school basketball game, at every time out and at the end of every quarter, there’s a horn that goes off. He doesn’t like extreme noises, especially if he’s caught off-guard … we have to make sure that the places we go are centered around him,” which involves a great deal more pre-planning than many families do for outings and activities.
Venable hopes that parents of other autistic children will take advantage of the opportunity to share their own stories—the struggles and the joys—at Saturday’s event, which will be held at Jack Dalton Park.
The event was initially planned for 2020 but was put on hold due to the pandemic. Venable, who works for the Virginia Department of Housing and Community Development’s rent relief program, said he and his wife, a phlebotomist at the Moses Cone Hospital in Greensboro, did the majority of the work and planning with help from several volunteers.
In addition to the opportunity to share stories, Venable said three food trucks and about 60 vendors will be on site. A DJ will provide music for the festivities, and there will be games, bounce houses, and door prizes.
“It’s going to be a humongous day, definitely bigger than we thought it would be,” he said, adding that he also hopes the event will help connect parents to resources in the community.
“We want to bring that awareness and let people know there are available resources in the Martinsville-Henry County area,” he said.
Lineberry, Kylan’s pediatrician, will be at the event, as will Dr. Mary Beth Noonan of Children First Pediatrics, representatives from ACME Therapies, and the new PHS Autism Center. The Center for Pediatrics is sending literature to be distributed.
Venable encouraged anyone who learns they have an autistic child to immediately seek out resources.
“Research shows early intervention for autism increases major long-term positive effects on symptoms and later skills,” he said. “So, the sooner you go, the better it will likely be for your child.”
He recommends the Center for Pediatrics. “They are really good, caring people” who help with occupations therapy and speech therapy.
Kylan goes every Tuesday, and the visits have helped the young boy with communication and comprehension.
“Kylan can 100 percent comprehend,” Venable said. “If we tell him to sit down, he can sit down, if we tell him to pick up his shoes, he can do that.”
Kylan still is largely nonverbal. “He may blurt out a word every now and then, but other than that, there hasn’t been a significant change in his verbal skills,” Venable said.
However, there is still a chance Venable will one day be able to speak with his son again, will one day hear him say goodnight.
“We’ve read stories where someone diagnosed at 2-years-old didn’t start speaking until they were 9, 10, or 11. There’s definitely still a chance. We trust in God for that,” he said.