For One Mother, Autism Workshop Gets Personal

The El Sereno Library hosted an autism awareness month workshop on Monday.

By Jacqueline Garcia, EGP Staff Writer

Three years ago when EGP first interviewed Josefina Nieves, she was overwhelmed with worry about what would become of her autistic son who was about to graduate from high school.

Today, Nestor, 21, is in his third year at Cal State University, Northridge and wants to become an occupational therapist, she says proudly.

Getting him to this point took a lot of work, said Nieves, who now helps other Latino parents find tools and resources to help their children with autism.

Lea este artículo en Español: Mujeres Comparten Experiencias de Sus Hijos con Autismo

As a parent coordinator with the Lincoln Heights based nonprofit Fiesta Educativa—a group that educates parents about autism, their rights and resources—Nieves conducts educational workshops for other parents who may be in a similar situation. She is especially interested in speaking to Latino parents who often have more difficulty because information available in Spanish is more limited.

“It is very important for Latinos to know about autism,” she told EGP Monday at the El Sereno Public Library where she was scheduled to lead a workshop for Spanish speaking parents.

The session was sponsored by the Los Angeles Public Library, which collaborated with nonprofit groups like Fiesta Educativa to provide autism education in April to coincide with Autism Awareness Month.

Autism is a neurological disorder that causes problems in social communication, lack of language and interest in common things and behavioral challenges such as not being able to control emotional outbreaks. The autism spectrum goes from low to severe and is four times more common among boys than girls.

In the U.S., one on fifty children have been diagnosed with autism, according to the U.S. Center for Disease Control and Prevention. Today, about one million people, from all ethnic and social economic backgrounds, are living with autism.

Fiesta Educativa has available Spanish information for Latino parents. (EGP photo by Jacqueline García)

Fiesta Educativa has available Spanish information for Latino parents. (EGP photo by Jacqueline García)

According to Nieves, not speaking English and cultural differences often make it harder for Latino parents to understand the disorder. For example, they may think an autistic child’s tantrum can be cured with a “spanking,” she explained.

Many Spanish-speakers do not know where to turn for help, she said. Those barriers can keep them from getting help even when it is available.

That point hit home Monday, when Veronica Jacobo was the only person to show up for the library’s free workshop.

According to Jocobo, her “mother’s instinct” told her something was wrong with her now 10-year old son.

“Around age three I noticed he was afraid of touching the sand in the park,” she said. “And one day at the beach, he didn’t even want to get out of the car” because he “was afraid of the sound of the waves,” she explained, during what turned out to be a one-on-one counseling session with Nieves.

Jacobo said she started looking for help at her son’s school and outside organizations as soon as he was diagnosed with autism. It’s been difficult, but little by little, she found help.

Her son, now in the fifth grade, has an aid who’s with him one-on-one at all times in school. But there are still many challenges, said the mother of two, explaining why she wanted to attend the library’s workshop.

Presentations at Stevenson’s Public Library in East Los Angeles and in Panorama City drew more parents, but one is better than none, Nieves said Monday, focusing her attention on Jacobo.

Struggling at times to hold back tears, Jacobo explained the problems she’s faced trying to help her son, who sat nearby playing with an IPad.

She’s attended other parenting workshops, she said, but felt all the materials they gave her to read wasn’t really helping. So “I quit after a while,” she said.

Nieves took Jacobo through the Spanish language Power Point presentation she brought with her to the workshop, explaining along the way the importance of knowing more than those assigned to help parents at places like schools and local regional centers.

“Sometimes you have to explain many times what you need and why,” Nieves told Jacobo in English, the language she felt more comfortable with.

She explained that knowing what your child is entitled to will help you get the services from the school district or one of California’s 21 Regional Centers, private, non-profit organizations under contract to the California Developmental Services (DDS) that coordinate services to people with developmental disabilities such as autism. The Eastern Los Angeles Regional Center (ELARC) provides services to families in the greater East Los Angeles area.

Nieves' sons Daniel, 19 (left) and Nestor, 21 during a family trip. (Courtesy of Josefina Nieves)

Nieves’ sons Daniel, 19 (left) and Nestor, 21 during a family trip. (Courtesy of Josefina Nieves)

The regional centers can help in many areas, including with basic like skills most people take for granted, she said.

“…They teach them to drive, to use money and do their chores” among other things, Nieves told Jacobo. “If the patient needs it, it is a program for life,” she added.

Funding for many of the free programs has been cut back so parents have to fight for them on behalf of their special needs child, Nieves said. Getting educated is vital, she emphasized.

Nieves recommends parents join organizations such as Fiesta Educativa, which offers a variety of programs. For example, at the group’s Community Parent Resource Center (CPRC) parents can get information about their child’s diagnosis and the school systems’ IEP, (Individual Education Program), as well as moral support.

They hold a Fiesta Familiar (Family Party” five times a month at the home of a volunteer family, where members can share food and a good time with other parents like them.

Regional Centers also offer a 16-hour Autism Parent Education Program (APEP) where parents can learn more about autism and what services are appropriate for their child. It has to be requested through a service coordinator.

There is no cure for autism and there is no medicine to prevent or stop it. Most experts agree that early detection and intervention can make a big difference in how the child does in school and throughout life.

The right diagnosis with the right resources are critical, emphasizes Nieves, who knows first hand that autism varies in severity from child to child, because her second child, Daniel, 19, also has autism. “His case is more severe,” she said.

Daniel will not be able to do many things on his own. For that reason, she continues searching for information and resources to help both sons as much as she can.

“I see my oldest son having a normal life, getting married and having kids,” but that’s not going to be the case for his younger brother, she said.

Jacobo says some things are getting better now that her son is older. She says she argues less with him, but daily routines such as taking a shower or putting away his stuff are a constant struggle: Sometimes I just have to ignore him.

“I try not to stress too much,” she said. “

He listens more and “I’m even thinking on enrolling him in a regular middle school,” she said, hoping to one day give him a “normal life.”

—-

Twitter @jackieguzman

jgarcia@egpnews.com

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April 30, 2015  Copyright © 2012 Eastern Group Publications, Inc.

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One Response to “For One Mother, Autism Workshop Gets Personal”

  1. Mujeres Comparten Experiencias de Sus Hijos con Autismo : Eastern Group Publications/EGPNews on April 30th, 2015 1:33 pm

    […] Read this article in English: For One Mother, Autism Workshop Gets Personal […]

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