Living with autism |

Living with autism

Post Independent/Kara K. Pearson

NEW CASTLE – If Robby Pihl has his wish, he’ll grow up to be Stephen Spielberg, George Lucas or Tim Burton.For now, the 13-year-old Riverside Middle School student – diagnosed with autism at age 7- is sticking to watching and memorizing lines from animated movies.”Disney is his favorite thing in the whole world,” said Robby’s mom, Holly, as he exercised at New Castle Family Fitness. “He loves movies and music, and he never forgets anything. He has a photographic memory, which I love.”Robby is one of 1.5 million people diagnosed with autism in the United States. The Autism Society of America estimates that autism prevalence could reach 4 million Americans in the next decade.”Autism is one of the most important health, social and economic crises in this country,” said Autism Society of America president Lee Grossman, in a press statement. “With over 60 new cases being diagnosed per day, autism is the fastest growing developmental disability in the U.S.”When Robby was first diagnosed in 2000 at Children’s Hospital in Denver, he was the first severe-needs student to attend Kathyrn Senor Elementary School, Holly said. The early years were difficult because there were no other children in Western Garfield County with autism.”Finding out that your child is not typical is a huge blow – it is like starting over with baby steps for everyone in your family. We were clueless – we didn’t know anyone else with autism,” Holly said. “It takes a couple of days of feeling the various forms of grief, denial anger. Then you get up and start learning.”Family has been the key to Robby’s success in becoming mainstreamed. His older sister, Tracy, now a freshman at Coal Ridge High School, has provided support for Robby – especially at school.

“Tracy is very protective of Robby,” Holly said. “She wrote a two-page essay about having a sibling with autism when she was 10 – powerful. We had talked about special schools for Robby but she didn’t like the thought of that at all. She’s learned a lot more about life than many people ever do.”Holly offered advice for families like her own in coping with the emotional and financial impacts of a child’s autism diagnosis.”The first thing to do is have an official diagnosis in writing. This gets you to the next step of financial services. Garfield County Social Services, Mountain Valley Developmental Services, and county assessment to get into district preschool,” she said. “Get Medicaid, which will help pay what insurance doesn’t on all of the therapies out there. Having autism is very expensive. Mountain Valley can help with a variety of things – respite care, funding an autism conference, special items for the home. The school has a responsibility to our special-needs children until they are 21. There are waiting lists for everything, so get on it soon.”She also said families new to autism must take the good times with the bad – and learn to laugh.”We’re ever-so blessed that Robby is funny. He’s like a little Rich Little. And he can sing anything,” Holly said. “He had no language when he was younger. People thought maybe he was deaf. But he just went to his first dance this year and he danced the whole time.”Holly recalled a frustrating time when she, her husband, Roger, Robby and Tracy were taking a family vacation to Florida. But anxiety cut it short.”That time Robby couldn’t fly to Disney was such a big thing for him, for all of us, because he is so completely engrossed with Disney. But his anxiety was so strong that he had to give it up to his fear,” Holly said. “That’s huge – that took a lot of healing – but now we had Disney in California. He threw a coin in Snow White’s wishing well and made his wish out loud. ‘I wish I could stay in Disneyland.'”Holly said the hardest part of raising an autistic child can be the communication – or lack thereof.

“That’s Robby’s biggest obstacle – expressing his needs,” Holly said. “If I could, I would unlock a little section in his brain to let all of his thoughts and feelings he has come out and we could understand more about him. I know Robby hears everything we say and takes it in, but can’t get it processed and back out. I would love to have a whole day with that.”Health issues can be a challenge as well.”Everything is amplified by the thousands. When he has a headache, it’s like he has a hammer in his head,” Holly said.Recently, Robby’s health improved when Holly and Roger changed him to a gluten- and casein (milk protein)-free diet.”When we took him off the gluten and casein, that was incredible. Before, he flapped his arms, walked on his toes and talked with his tongue,” Holly said. “It was like a cleansing, because when some autistic kids get into gluten or casein, it acts like a poison or a toxic. Sure enough, it was poisoning his system. Now he’s eloquent with his language. He can tell any story from the Bible.”Holly said she hopes Robby’s ability to entertain others extends to his adult life.”I’d like to explore options for him in animation production,” Holly said. “His talents are numerous. He does know all of the actors, directors, release dates and years for movies – I love that.”

Contact April E. Clark: 945-8515, ext. 518aclark@postindependent.comPossible autism indicators• Does not babble, point, or make meaningful gestures by 1 year of age• Does not speak one word by 16 months• Does not combine two words by 2 years• Does not respond to name

• Loses language or social skillsSome other indicators• Poor eye contact• Doesn’t seem to know how to play with toys• Excessively lines up toys or other objects• Is attached to one particular toy or object• Doesn’t smile• At times seems to be hearing impaired

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