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Families Raise Their Voice and Cash in the Fight Against Autism PDF Print E-mail
Written by Alex Garcia   
Thursday, 24 April 2014 07:44

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Lesny and Jimmy Duarte with their two sons Anthony, 8, and Matthew, 5.

Beginning in April, Lesny and Jimmy Duarte bought some 20 blue lightbulbs to illuminate the porch of their house and to also give away to their neighbors along O’Melveny Avenue in the city of San Fernando.

It’s a way to “light it up blue,” as the campaign is called, to raise awareness about autism, a disorder that affects more than 2 million individuals in the United States. According to the Center for Disease Control (CDC), one in 68 children receive that diagnosis, a 30 percent jump from a couple of years ago.

It’s a figure that Lesny knows well. Her two children, Anthony, 8, and Matthew, 5, were both diagnosed as autistic at age 4; since then, it’s been a daily struggle to deal with a disorder that is both hard to understand and full of challenges.

“It’s scary when they tell you your kid has autism and you don’t know what it is,” Lesny said. “And when I get the diagnosis [again] for Matthew, it was heartbreaking again.”

Lesny has fought hard to get the therapy and help she needs for her sons: both struggle with speech and still wear diapers, have sensory and physical challenges, and at one point used to hurt themselves.

She’s also become an advocate for local families who have children with autism and has taken part every year in the “Walk Now for Autism Speaks,” an annual event that will be held at the Rose Bowl this Saturday April, 26, as families gather to raise funds for autism research and raise their voices in the fight against the disorder.

Up to 50,000 people are expected to take part, beginning at 8 a.m. The event features a 5K walk, a resource fair and entertainment.

“I have a team of about 30 people. We have raised about $1,000 so far,” said Lesny, adding that they have raised the cash through events at local restaurants, bake sales and donations from family and friends who join her on the walk. The therapists who work with her kids are also part of her team, called “A & M Duarte” in honor of her sons.

A Double Challenge

Autism encompasses a complex group of disorders in varying degrees that can lead to difficulties in social interaction, verbal communication and repetitive behaviors. Autism appears to have its roots in very early brain development; its signs can often be spotted between 2 and 3 years of age.

It was the lack of communication that led Duarte to her first diagnosis with Anthony, who is in the moderate to severe range of autism. He has since improved, but there are still challenges, said Duarte.

“Noises bug him, and social wise, Anthony still struggles,” she confessed.

Matthew is high functioning, more sociable and hyper, but “they still wear pull ups and can’t go to the potty by themselves.”

The boys must be watched constantly, as they “tend to run away if you’re not on top of them,” Lesny said. “I stay home and take care of them.”

They each have one individual therapist who comes to their house three hours a day, Monday through Friday.

But getting the therapists and help for their children was not easy. “It took me almost a year with Anthony to get therapy,” she recalled. Anthony now attends The Help Group, a specialized school in Sherman Oaks where he receives speech therapy and dog therapy to help with his socialization skills.

She had to do the same with Matthew.

“It’s hard to fight with the LAUSD (Los Angeles Unified School District)”, Lesny said. She had to go to mediation with the district in order to move Matthew to Tulsa Elementary School in Granada Hills, where they have better resources for him and where he also has a “shadow,” a special school aide.

Both Anthony and Matthew still struggle with speech. “Matthew was considered non verbal,” Lesny said. “We use a lot of sign language,” she added, noting that she had to go through a program to learn sign language. Her husband Jimmy already knew sign language.

The Autism Walk

The boys also used to hide and hurt themselves, and had difficulty being outside with other people.

But therapy and their parents’ efforts have overcome that.

“Now we can go pretty much anywhere,” Lesny said, noting that, at first, it’s often common for parents to be afraid to go out in public with autistic children because of people’s reactions to tantrums and other behaviors that could be considered “weird” or “abnormal.”

That’s one of the reasons why she loves taking part in the Autism Walk.

“It’s sad to us because you have tons of kids who are similar to Anthony and Matthew, but it’s also great because you learn from other parents and we’re all like family,” Lesny said of the walk. “We help each other out and we know people are not going to be staring at them (Anthony and Matthew). We don’t have to worry about meltdowns."

There are also plenty of resources and agencies represented at the walk for parents facing challenges with their children.

In all, Lesny said, there’s a sense of camaraderie in all the participants who know that they are not alone; that perhaps, in a small individual way, they are all contributing to raise awareness and research funds for an ever increasing disorder.

The funds raised are used to support research at UCLA, USC, Children’s Hospital, and other Los Angeles based research organizations.

The Walk Now for Autism Speaks takes place this Saturday April 26 at the Rose Bowl, 1001 Rose Bowl Drive, in Pasadena. The event runs from 8 a.m. to 12:30 p.m., and some 50,000 participants are expected this year. For more information, visit www.walknowforautismspeaks. org.

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Last Updated on Thursday, 24 April 2014 07:52