Two 9-year-old boys on the autism spectrum have brighter futures because they have proactive mothers who advocate for them.
Both Jennifer Martillo of Plainfield and Martha Hernandez of Joliet handpicked their sons’ schools, and sought therapy and extracurricular activities that best suited the boys’ needs.
Elliot showed signs of autism after his second birthday, but wasn’t diagnosed until he was 3 years, 5 months old, Jennifer said. The therapist who did Elliot’s preschool screening spotted it – the family lived out of state at the time – so Jennifer scheduled an appointment at a children’s hospital.
There, Elliot received his diagnosis and Jennifer received a list of developmental milestones Elliot would probably never achieve, including the abilities to speak, interact with people and perform the tasks of daily living.
And then they were sent on their way, Jennifer said.
As a parent, Jennifer felt she had two choices: accept it or find another way. This wasn’t about trying to “beat the diagnosis,” but to “help my child be the best he can be,” she said.
Jennifer chose option No. 2.
“I decided to make sure he had every opportunity possible,” Jennifer said. “And we struggled.”
They waited for services. Insurance didn’t cover services. The family moved several times seeking a school district that could meet Elliot’s needs.
“I have been in five school districts since my son was diagnosed,” Jennifer said.
Jennifer cites two reasons for Elliot’s progress: Troy School District 30-C and swimming, first through the Bolingbrook Pelicans (a recreational swim team) and then through the Greater Joliet YMCA Jets (a competitive swim team).
Elliot qualified for and competed at the YMCA state competition March 18 and March 19, Jennifer said. He came in 13th for his 50-yard butterfly, she added.
But it’s Troy that changed Elliot’s life, Jennifer said.
“Up until the time we started at Troy School District, we had a behavior plan,” Jennifer said. “Within a month, we met and they said, ‘This child does not need this.’”
Amanda DeBold, Elliot’s special education teacher at Troy Hofer Elementary School in Shorewood, said Elliot has made “huge progress” since she first started working with him last year in the third grade.
At the time, Elliot’s verbal and reading skills were minimal, DeBold said. Little problems – not being first in line or computers with different screen savers – were big problems for Elliot; he hated school, she added.
“He did not want to be here. He was scared,” DeBold said. “And now he takes on challenges. He’s not afraid to say, ‘This is hard, but I can keep trying.’”
In fact, Elliot is doing so well at Troy, he no longer needs outside services in occupational and speech therapy, Jennifer said.
“Elliot is a 9-year-old boy that can do everything a normal 9-year-old boy does,” Jennifer said. “He has lots of friends. He goes to birthday parties.”
She’s not implying all struggles are gone. Elliot still is, after all, on the autism spectrum. That won’t change.
“But I think we all struggle with things, don’t we?” Jennifer said.
On Sunday, the Joliet West High School National Honor Society hosted its annual Tiny Tigers Fun Fair. Proceeds this year went to the Phelan-McDermid Syndrome Foundation in Florida in honor on Anthony Hernandez, 9, of Joliet.
Anthony was diagnosed with the rare disease when he was 3 years old. He was also diagnosed with autism when he was 5, said Anthony’s mother, Martha Hernandez of Joliet.
“At 9, he’s still nonverbal,” Martha said. “He’s still in diapers. He still doesn’t make eye contact with others.”
According to the Phelan-McDermid Syndrome Foundation’s website, Phelan-McDermid syndrome – also known as 22q13 Deletion syndrome – is a genetic condition “caused by the deletion of the terminal end of chromosome 22 or mutation of the SHANK3 gene.”
In most cases, including Anthony’s, the condition is not inherited, but results from a spontaneous mutation. Martha and her husband, Jenaro Hernandez, also have three other children – Areli Hernandez, 18; Eric Hernandez, 14; and Eliana Hernandez, 6 months. None has the disease, Martha said.
Like Jennifer, Martha searched to find the right school and visited several.
“Developmentally, he is still a 1-year-old,” Martha said. “Everything still goes in the mouth. His hands go in the toilet. He doesn’t know danger.”
She finally decided on Elim Christian Services in Palos Heights due to its variety of services. Anthony has occupational therapy and speech therapy at Elim (the school also has a pool for water therapy, Martha said) and applied behavioral analysis outside school, which the family’s health insurance covers.
After school, Anthony has one-on-one interaction at the Joliet Park District’s Hartman Recreation Center. Anthony’s progress is not dramatic, but Martha is pleased her son’s experiences are widened and tailored to his needs.
“We used to do the [Picture Exchange Communication System] cards because he’s nonverbal,” Martha said, “but now he’s actually using a Go Talk 9+ device.”
This article has been updated to correct Elliot Martillo's last name. The Herald-News regrets the error.