FORT CARSON, Colo. -- For Hugo's six years, his mother, Angie Petit, has been his advocate. Hugo Petit was born with a rare medical condition, juvenile xanthogranulomas disease. When he was 4 years old, he was also diagnosed with autism.
"He's never talked. He's completely nonverbal and has been since birth," she said. "I saw this great quote the other day. 'I thought I was going to have to teach my child about the world. Instead I'm teaching the world about my child.' I think that's pretty amazing, because it's really true."
The Petits' journey began when they brought Hugo home from the hospital. Hugo's father, Sgt. Kelly Petit, Company B, 299th Brigade Engineer Battalion, 1st Stryker Brigade Combat Team, 4th Infantry Division, found a tumor while changing his diaper.
Juvenile xanthogranulomas, which Hugo was diagnosed with at 3 months old, is an extremely rare disease that can cause benign tumors throughout the body. The prognosis is good, with most tumors shrinking and vanishing in childhood, Angie Petit said.
Doctors aren't sure whether there is a connection between the disease and Hugo's autism.
"Our situation is very different from your typical autistic case. Typically, children are born and they develop completely naturally, and when they hit about 18 months of age, the parents start noticing (that) they aren't talking anymore, they're not making eye contact anymore … and they start regressing," Angie Petit said.
Because of the severity of Hugo's conditions, he began speech therapy when he was 11 months old, followed by occupational therapy, physical therapy, applied behavioral analysis (ABA) and other therapies.
"He's got therapy every day of the week," Angie Petit said. "We've seen so many benefits … not just with him, but with us working with the therapists. We get so many ideas on how to handle situations."
Children with autism are prone to temper tantrums and meltdowns, often because they're frustrated by their inability to communicate.
When Hugo has meltdowns, his mother has learned to not reward the negative behavior.
"One thing that we've learned is, if he's throwing himself on the floor because he wants this toy, then to give him the toy, we have to (gain) compliance, even if it's something simple like, 'Hugo, touch your nose.' Now he thinks he got the toy for touching his nose instead of throwing himself on the ground," she said.
As Hugo has continued with therapy, he is learning to express himself, but that can lead to conflict with others who don't understand the situation.
"Once Grandma bought Hugo an ice cream cone, and he was over-the-moon excited. He jumped out of his seat. He started squealing and making his singing noises and another person in the restaurant said, 'That child needs a spanking.' He thought we weren't parenting our child because he was so vocal, and we were in a public place, and he should have been quiet," Angie Petit said. "In my mind, I'm cheering ecstatically that my child is showing some emotion. You don't know how much it took to get to this point."
The desire to educate others on the challenges of autism is part of what led her to help organize Fort Carson's Light it Up Blue event April 2, 2015. Signs at the main gate and roundabout were lit blue as part of World Autism Awareness Day.
"Think before you talk. What people say really hurts other people," she said. "You judge my child, thinking that he's being rude when really, he just hit a milestone in his life … parents don't need to feel like they're bad parents. A lot of us go above and beyond and we try our hardest."
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