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" 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&amp;#039;s a singularly terrifying diagnosis. Major signs include problems with communication and social interaction, from the child who doesn&amp;#039;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&amp;#039;s no time to lose: Children with autism can make the most progress before they turn 3, in what&amp;#039;s commonly called the &amp;quot;crucial window&amp;quot; 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&amp;#039;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: &amp;quot;Good eye contact, Ryan!&amp;quot;  Ever since Ryan&amp;#039;s development began to backslide in November 2006 -- when he stopped saying the words he&amp;#039;d learned -- these seemingly small accomplishments, or &amp;quot;mommy moments&amp;quot; as Nicole calls them, carry this 35-year-old stay-at-home mom through the tough days, of which she&amp;#039;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&amp;#039;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&amp;#039; three children. &amp;quot;He was full of big smiles and would let anyone hold him,&amp;quot; recalls Nicole. &amp;quot;As a toddler, when he heard a group of adults laughing about something, he&amp;#039;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.&amp;quot;  Beyond being &amp;quot;a ham,&amp;quot; as Nicole affectionately puts it, Ryan was on track developmentally. He waved, blew kisses, and by 14 months, he was putting two words together, such as &amp;quot;hold you.&amp;quot; Leading the typical toddler life, Ryan had weekly playdates and was toted around to the mall, to his sisters&amp;#039; activities, and to their school. &amp;quot;The school was also our church, so we were there a lot and Ryan was well-known,&amp;quot; she says. &amp;quot;Everyone was excited to see him.&amp;quot;  His biggest admirers, however, were at home. His sisters adored their bedtime routine with Ryan, who would grab his blankie and head to each of the girls&amp;#039; rooms to say goodnight. &amp;quot;He gave them a big hug and blew kisses,&amp;quot; says Tim, who owns a contracting business. &amp;quot;Sometimes he crawled into their beds to cuddle. The girls couldn&amp;#039;t get enough. Suspicious Behavior  When Ryan was 17 months old, Nicole took her outgoing toddler for a routine checkup and immunizations. &amp;quot;He&amp;#039;s doing well,&amp;quot; the pediatrician said. But over the next week, Ryan became lethargic and pale. He had chronic diarrhea. And he lost his appetite. Nicole was out of her mind with worry. The doctor ran tests, assuming a virus was to blame. Two months later, when Nicole saw Ryan munching on a granola bar, &amp;quot;I felt like I&amp;#039;d hit the lottery,&amp;quot; she says.  Her elation was short-lived. Within two weeks, Ryan had a string of ear infections and stopped saying some of his usual phrases, like &amp;quot;bye-bye&amp;quot; or &amp;quot;night-night.&amp;quot; Days later, he no longer responded to his name or brought her toys. Wondering if he was speech-delayed, Nicole took her concerns to friends; they assured her that &amp;quot;boys are slower with language.&amp;quot; Their comments seemed to make sense. &amp;quot;Eight years ago, I was a special-education teacher, so I questioned whether I was overly tuned in to the situation,&amp;quot; says Nicole. &amp;quot;So we told ourselves, &amp;#039;Ryan is busy learning other skills, and the ear infections slowed his language.&amp;#039;&amp;quot; Just before Ryan&amp;#039;s second birthday, Nicole&amp;#039;s anxiety returned. Her little boy still hadn&amp;#039;t recovered his lost words and wasn&amp;#039;t making much eye contact. His sweet bedtime routine ended too. &amp;quot;I&amp;#039;d lead him into his sisters&amp;#039; rooms, but he refused their hugs,&amp;quot; Tim recalls. Eight-year-old Ciera cried, &amp;quot;Why doesn&amp;#039;t Ryan love me anymore?&amp;quot;  Nicole&amp;#039;s concerns continued to swell when she saw an episode of Oprah on identifying autism. &amp;quot;It described a type known as &amp;#039;regressive,&amp;#039;&amp;quot; says Nicole. One of the early signs: loss of language. Nicole&amp;#039;s heart sank, and she insisted to Tim that they take Ryan to the pediatrician.  The doctor asked, &amp;quot;Does Ryan get excited when he hears the garage door open when Daddy gets home?&amp;quot; The couple nodded yes.  &amp;quot;Does he have receptive language?&amp;quot; -- meaning, if you say it&amp;#039;s time to go bye-bye, he gets his shoes. The couple again nodded yes.  &amp;quot;Does he put two words together?&amp;quot; Nicole explained that she hadn&amp;#039;t heard some of his old two-word phrases like &amp;quot;bye-bye,&amp;quot; but he did have some new words.  &amp;quot;Just work with him on two-word phrases,&amp;quot; the doctor said. &amp;quot;Ryan&amp;#039;s fine. The Search for Help But Nicole still feared that Ryan was not fine at all. And one morning in late July, four months after seeing the pediatrician, her fears were confirmed. She went into Ryan&amp;#039;s room to get him from his crib, and he wasn&amp;#039;t saying &amp;quot;mama&amp;quot; as usual. When she lifted him up, he tried to push her away. Distracted by her daughters, Nicole left Ryan for a minute. When she returned, he was on the floor with his back to the door, rocking slightly, and painstakingly lining up toy cars in a straight row. &amp;quot;At that moment, time stood still,&amp;quot; says Nicole. &amp;quot;I desperately called his name, but he wouldn&amp;#039;t turn around. I wasn&amp;#039;t asking one more person if something was wrong; I knew there was.&amp;quot;  Distraught, Nicole contacted Nevada&amp;#039;s Bureau of Early Intervention Services (NEIS), the state agency that provides services to kids under 3 with developmental delays. The first available appointment was a month away.  During that wait, Ryan&amp;#039;s symptoms snowballed. He fixated on objects, such as the spinning wheels on his cars, and he held his fingers near his face, repeatedly flicking them. Noisy places triggered wild tantrums. &amp;quot;At my daughters&amp;#039; school, he screamed and kicked people,&amp;quot; says Nicole. &amp;quot;Wearing a smile for my daughters was difficult. Most of the day, I cried, trying to get Ryan to look at me. The feeling of losing him was killing me.&amp;quot;  Finally, at the end of August, the Kalkowskis had their evaluation with an NEIS developmental specialist and a speech pathologist. During the three-hour meeting, Tim choked up as he described Ryan&amp;#039;s behavior: &amp;quot;It all hit me,&amp;quot; says Tim. &amp;quot;Talking about the negatives -- what he wasn&amp;#039;t doing well- -- was painful. And hearing that our 2-year-old was performing at a 1-year-old level was the worst. Toward the end of the meeting, the NEIS specialists told Nicole and Tim that although their agency wouldn&amp;#039;t provide a diagnosis, Ryan did qualify for some services. The couple was upset -- they knew Ryan had to receive a diagnosis in order to get the full range of therapies he needed. The Kalkowskis also felt let down by the meager amount of therapy the state would offer. Instead of seeing both occupational and speech therapists, Ryan would be assigned a &amp;quot;coach&amp;quot; who would tackle both areas of treatment. For only two hours a week, the coach would work with Ryan and teach Nicole and Tim the therapies, so they could perform them the rest of the time. &amp;quot;I kept reading that 40 hours of behavioral therapy is what you need for the most improvement,&amp;quot; says Nicole. &amp;quot;We weren&amp;#039;t even close. And hearing that Tim and I would be responsible for so much of the speech and OT [occupational therapy] scared us.&amp;quot; Nicole was terrified that her son would lose his best chances for any kind of recovery.  Worried and confused, Nicole immediately sank into a depression. &amp;quot;I didn&amp;#039;t sleep and became obsessed with autism,&amp;quot; says Nicole. &amp;quot;I read every website and book. When love and anger ball up in you like that, you can read faster than ever.&amp;quot; Meanwhile, Ryan&amp;#039;s condition worsened: His hands were often curled into fists and he stopped eating with his fingers; instead, he used Nicole&amp;#039;s hand to pick up food and put it into his mouth. Nicole was afraid that he faced severe autism. &amp;quot;I had no hope and felt like my heart was being torn out,&amp;quot; she says. &amp;quot;I worried that he&amp;#039;d never have friends and would never tell me, &amp;#039;I love you.&amp;#039; I worried about his sisters and how it would be growing up with a brother with a horrible disorder. I feared for my marriage because I knew the statistics about couples who have children with autism aren&amp;#039;t good. I feared for everything in his future and the future of our family.&amp;quot;  For two long weeks, Tim watched his wife of 13 years become withdrawn and desperate; finally, he decided that they had to talk. A teary-eyed Nicole recalls that night: &amp;quot;He said: &amp;#039;What are you doing? You can&amp;#039;t keep this up. Ryan will be fine, and don&amp;#039;t think you know his whole future because he has autism.&amp;#039; Then, in a caring way, he added, &amp;#039;You helped so many other kids when you were a special-ed teacher, and you can&amp;#039;t give up hope when it&amp;#039;s your own child.&amp;#039; After, we prayed together. That night, I felt deeply connected to Tim, and realized Ryan would be fine. A Fierce Determination  With that adjusted perspective, Nicole began her search for information anew, seeking out websites that used words like &amp;quot;hope&amp;quot; and &amp;quot;recovery.&amp;quot; Choosing not to be limited by Nevada&amp;#039;s offerings, the couple hired private speech and occupational therapists. &amp;quot;Two months before Ryan started losing words, we moved into our &amp;#039;dream house&amp;#039; and cut down on spending,&amp;quot; says Nicole. &amp;quot;We had no budget for two therapists to come once a week at $135 each, but there was no time to spare.&amp;quot;  Nicole was also determined to get a diagnosis and more state-funded therapies for Ryan. She contacted autism-advocacy groups and learned that having Ryan evaluated and diagnosed by a doctor who specializes in detecting and treating developmental and behavioral difficulties (what&amp;#039;s known as a developmental pediatrician) would officially qualify him for state-funded services. During a planning meeting she had with her team of NEIS specialists, she insisted on getting an appointment with the organization&amp;#039;s developmental pediatrician. Her demand was met, and she had an appointment scheduled for two weeks later. Still, she was afraid of getting the runaround and once again walking out the door without a diagnosis.  Nicole felt her next move would make all the difference: She took Ryan back to their family pediatrician for a diagnosis. The doctor was shocked to see the once-vivacious boy she&amp;#039;d known sitting in the corner, staring at his fingers. She listened as a shaken Nicole rehashed all that had happened with Ryan. The doctor hugged Nicole, and handed her a diagnosis of autism.  That gave Nicole more confidence when meeting with the developmental pediatrician about a week after, in late September. The doctor agreed that Ryan had autism, and in addition to the therapies they were learning from the NEIS coach, the doctor approved a larger range of services, including a speech therapist, occupational therapist, and nutritionist. Since that diagnosis, the scope of Nicole&amp;#039;s daily to-do&amp;#039;s has become mind-boggling. The biggest nonnegotiables on her schedule board -- which is prominently posted over her desk -- are practicing the therapies she&amp;#039;s learned. About five times a day, Nicole &amp;quot;brushes&amp;quot; Ryan: She strokes his back, hands, arms, legs, and feet with a plastic-bristled brush to help him adjust to sensations, including touch, which can overwhelm him (sensory issues are common among children with autism). For the same reason, she does &amp;quot;heavy work&amp;quot; with Ryan three times a day; she might, for instance, have him pick up a weighted ball. And she gives him deep-pressure joint compression massages (she presses on combinations of joints, such as ankle and knee, to release the calming brain chemical serotonin). Nicole wishes she had more time to explore treatment options. No matter how much she does, Nicole is certain she&amp;#039;s not doing enough.  &amp;quot;With everything that&amp;#039;s going on with Ryan, I have trouble balancing attention between my kids,&amp;quot; says Nicole. &amp;quot;For example, I may walk away from doing homework with my daughters when Ryan needs something. Then I hear, &amp;#039;Why are you always going to Ryan?&amp;#039; It makes me wonder what else I&amp;#039;m messing up.&amp;quot;  Looking at her schedule board, she does point out bright spots: Sunday evenings, after the kids are asleep, she enjoys quiet time with Tim. There&amp;#039;s also an upcoming lunch with her girlfriends. And then there are the Monday-morning playdates with a friend from church and her son. &amp;quot;It&amp;#039;s been healing when people like Sue show up at my door to offer support,&amp;quot; she says. &amp;quot;She and I walk and take the boys to the park. It&amp;#039;s the one day I feel like a normal mother again.&amp;quot;  More on Autism: Why Is Autism Still Such a Mystery? Living with Autism Could It Be Autism? Look for the next installment of Living With Autism in the May issue of REDBOOK. "^^<http://www.w3.org/2001/XMLSchema#string>
<http://www.redbookmag.com/life/mom-kids/advice/a2553/living-with-autism-0208/>