Kern Autism Network shares support, understanding for parents, kids

Jul. 13—Denial. Anger. Sadness. Self-blame.

Karla Martinez recalls being overwhelmed and overcome with grief when her second child was diagnosed with autism.

"I will say, we go through a whole roller coaster of emotions," Martinez said. "Eventually, we get to acceptance."

And even though she went to parent meetings, earned certifications and became a special education teacher who had been working with children with autism since her son's diagnosis, it was just as difficult when her fourth child was diagnosed at 16 months old.

The second time around, she pushed for doctors to recognize that her daughter's sudden lack of speech and verbal regression wasn't normal. Martinez knew she wasn't just being "paranoid," which was what some doctors tried to tell her, because she was now working in the field and had been through the testing process with one of her boys.

And when she found out she was right about her daughter, she knew it was only the start of another journey.

"I will tell you, even though I've lived with this for so many years, we still go back to the anger, at times, and the sadness, because they'll hit milestones," she said, referring to puberty as an example. "And I don't like to say they 'regress.' We say, 'they take a few steps to the side,'" Martinez continued. "And we have a little bit more, you know, bumps along the way.

"The progress is slower, but that's one of the things Ramona gives us. Hope. Definitely hope. I will tell you in this journey as a parent, learn about having hope, having patience and unconditional love. Those are the three things I think my children taught me."

Ramona Puget and her network have been an irreplaceable guidepost along the way.

For the last 19 years, Puget has led the Kern Autism Network, a local organization that supports parents, and she knows that while every child with autism is different, depending on one of three "levels" on the spectrum and the myriad comorbidities that can exist — ranging from attention deficit disorder to cerebral palsy — Martinez's story and experiences are more common than most realize.

In fact, autism spectrum disorder is the fastest growing developmental disability in the nation, according to the National Library of Medicine. And due to progress made in screening, it's become much more prevalent, even in the last 10 years. Autism spectrum disorder affected approximately 1 in 68 children in the United States, according to a 2015 Library of Medicine study. By 2018, the Centers for Disease Control and Prevention reported that figure was about 1 in 44 among 8-year-olds.

Through word of mouth, school meetings and events like the sensory-friendly swim session Sunday at McMurtrey Aquatic Center, Puget has established the Kern Autism Network as a place where children, and their parents, can benefit from a supportive, judgment-free environment where everyone is dealing with autism, always with understanding that they're not alone.

"So basically, if a family is concerned that there's a possibility that their child has autism, they'll reach out to us we can put them on the path of how to obtain a diagnosis, how to get support groups, how to join any of the activities and events that we offer, helping them with, you know, if they need help in the school site with an (individualized education plan) ...," Puget said. "I mean, there's so much that is involved, that parents become overwhelmed and literally feel like they're at a loss because they don't know where to go."

Melissa Leyva went to the swim event Sunday with her husband and their three boys after reading about it on Facebook, but she was already familiar with the network. She described her talks with Puget as parent-to-parent conversations.

"In general, when we try to go out with the kids, they have their sensory issues and, you know, we get a lot of stares and stuff," Leyva said at the aquatic center Sunday. "So right here, it feels comfortable because you know that all families know what kind of like what we're going through and you don't get any judgment from anybody."

At the swim event over the weekend, for example, the center set aside time just for the network, and the lifeguards, who seemed to be ubiquitous, didn't use whistles, which can upset some children with autism.

The parents there also supported each other, she said, with everything from making sure everyone's always keeping an eye out for all the kids to suggestions for resources and places to go.

"It is very helpful," Leyva added. "It makes us feel like we're not alone. "Because most of the time when it comes to resources, that's what it really feels like — that we're alone."

Before her two older boys were diagnosed, she didn't know anything about autism, she said, and she had never really heard anyone talk about it.

"Since then, I've kind of noticed that it's been kind of hard to get people to understand what it is and the struggles that we go through," Leyva said. "So having someone like (Puget) to go out of their way to put something like this together. It's an amazing feeling for us as parents."

Puget said being the parent of two children with autism helps create a bond right away with parents.

"'This is all normal, what you're going through, you're gonna go through a grieving process, but just realize you're not alone,'" Puget said, sharing how she often starts the dialogue with new parents.

More people are being diagnosed as the understanding of autism spectrum disorder has advanced. When her now 30-year-old son was diagnosed, about 1 in 100 children were found to found to have autism spectrum disorder.

"A lot of times, the public doesn't realize that, they think it's just a small controlled amount of folks with autism," Puget said. "No, no, no, no. There's over 2,000-plus cases here in Kern County, and that number continues to grow."

For more information about the Kern Autism Network, email kernautism@gmail.com, call 661-489-3335 or visit kernautism.org.

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