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Living with Autism: "Losing My Little Boy"


WebMD Commentary from "Redbook" Magazine

By Nancy Rones
Redbook Magazine Logo
Nothing could have prepared Nicole Kalkowski for the agony of seeing her once-bubbly and affectionate son, Ryan, slowly slip away from her into the grip of autism -- a complicated and hotly debated condition that takes a heavy toll on every family it touches. Meet Nicole, her husband, and their children as they struggle to cope with one of the nation's fastest-growing developmental disorders.

The statistics are shocking. One in 150 children living in the United States has an autism spectrum disorder (ASD). And each year, the numbers tick upward by 10 percent to 17 percent. Although the causes of autism are under debate, the families affected by this perplexing disorder agree that it's a singularly terrifying diagnosis. Major signs include problems with communication and social interaction, from the child who doesn't smile at his mom to one who stops speaking. Unusual and often repetitive behaviors, such as rocking back and forth, are also strong indicators -- and agonizing for a parent to witness. And once an ASD is suspected, there's no time to lose: Children with autism can make the most progress before they turn 3, in what's commonly called the "crucial window" of brain development. When autism invades a home, life gets flipped on its head. This is a reality that Nicole Kalkowski faces every day. After her toddler, Ryan, showed red flags for autism, she struggled to get answers. In this multipart series, REDBOOK follows Nicole and her husband as they race against time to help their son.

Sitting in the family room of her Las Vegas home, Nicole Kalkowski lights up when she sees her 2-year-old, Ryan, come bopping down the stairs. Entering the room, he begins walking in circles and gazing at his fingers, which he's fluttering close to his face. As if on cue, Nicole leaps up, playfully tosses Ryan onto the couch, and stretches and massages his legs while singing a made-up song. For a moment, he looks up at her. Nicole is elated, showering him with praise: "Good eye contact, Ryan!"

Ever since Ryan's development began to backslide in November 2006 -- when he stopped saying the words he'd learned -- these seemingly small accomplishments, or "mommy moments" as Nicole calls them, carry this 35-year-old stay-at-home mom through the tough days, of which she's seen many in the past year. For Nicole and her family, including her husband, Tim, 37, and daughters, Ciera, 8, and Ella, 6, the long journey leading to Ryan's shocking diagnosis of autism has been an emotional tug-of-war.

A Sweet, Bubbly Boy

From the time he was born, Ryan was the most social of the Kalkowskis' three children. "He was full of big smiles and would let anyone hold him," recalls Nicole. "As a toddler, when he heard a group of adults laughing about something, he'd let out a big chuckle the second everyone was quiet. He pretended to understand what we were talking about so he could be part of the group."

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