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" For the past year, REDBOOK has chronicled the hopes, heartaches, and everyday moments of the Kalkowski family as they&amp;#039;ve struggled to regain their equilibrium after Ryan, 3, was diagnosed with autism. During their trying journey, Ryan&amp;#039;s parents have clashed with the bureaucracy of the local school district, been slapped with piles of unforeseen expenses, and absorbed every bit of information they could about this complex and often devastating condition. The Las Vegas family \u2014 mother Nicole, father Tim, daughters Ciera and Ella, and, of course, Ryan \u2014 is in a good place now: Ryan has made progress in many areas, including speech and behavior, and his parents have become active in the autism community. They&amp;#039;d like to believe that the toughest battles are behind them, even though they know that autism isn&amp;#039;t going away tomorrow. Here, they see just how far Ryan has come, and map out their game plan for his future. It&amp;#039;s a typical afternoon in the Kalkowski home. Ryan is sitting on the shag carpet in the playroom as his behavioral therapist leads him from one task to the next. When the golden-haired little boy is successful \u2014 he manages to get a puzzle piece to fit or correctly names an object in one of his workbooks \u2014 both his therapist and his mother, Nicole, cheer, &amp;quot;Super job!&amp;quot; or his favorite, &amp;quot;You&amp;#039;re so smart!&amp;quot;  At times, the 3-year-old&amp;#039;s attention wanders and he begins to make singsongy sounds; this behavior is called vocal stimming, a technique Ryan uses when he feels overwhelmed and which is thought to help him soothe himself. With a little coaxing from his therapist, the toddler quickly regains his focus. Then Ryan moves on to a harder task: He&amp;#039;s required to sit in a chair and repeat simple words that his therapist says, such as blue, please, and nice. If Ryan says the word clearly enough, he&amp;#039;s rewarded with a piece of candy or a toy; some of his words are &amp;quot;fuzzy&amp;quot; and he has to try again. He starts getting squirmy but proudly keeps racking up his hard-earned prizes.  The biggest reward, though, is yet to come. When it&amp;#039;s time for a break, Ryan leaps into Nicole&amp;#039;s lap for a hug and some &amp;quot;tickle, tickle.&amp;quot; The small gains he makes during his session mean a lot to Nicole, 36, but it&amp;#039;s her little guy&amp;#039;s affection toward her \u2014 an aspect of his personality that vanished along with other critical developmental skills when he was about 18 months old \u2014 that warms her heart the most. Nicole will never forget the intense pain she felt when she&amp;#039;d lost the emotional bond with her boy. As she puts it, &amp;quot;Having Ryan refuse me completely was the worst thing I&amp;#039;ve ever experienced.&amp;quot;  Testing Ryan&amp;#039;s Limits Despite Ryan&amp;#039;s progress, one constant unknown is his response to new situations. When the Kalkowskis decided to join four other families on a five-day trip to Arizona in mid-July, Nicole was filled with anxiety. She recalled the family&amp;#039;s last group vacation, a year earlier, right after Ryan was diagnosed and at his worst stage of regression. Because of what are known as sensory issues \u2014 his hypersensitivity to certain factors in the environment, such as loud sounds and crowds \u2014 he had wild outbursts. &amp;quot;On that trip to Laguna Beach, Tim and I took turns staying in the room because Ryan&amp;#039;s meltdowns in public were so bad,&amp;quot; says Nicole. &amp;quot;I remember Ryan screaming and clawing at me in a crowded restaurant. He cried hysterically for hours after that.&amp;quot; Her stress then was unbearable, to the point where she broke out in hives. At the start of the Arizona trip, Nicole braced for the worst, fearing that Ryan&amp;#039;s tantrums might resurface because of the break in his routine and all the people around. So she was happily surprised to see her boy giggling a lot and eager to explore the new setting. He loved playing in the pool and holding hands with his friends on hiking trails and was even fine in loud restaurants. (Though in one crowded eatery, he reached his limit when the group&amp;#039;s meal lasted close to two hours. Ryan raised his little voice and said, &amp;quot;Be quiet.&amp;quot; Some of the kids near him laughed, and then Ryan laughed too.) Most striking for Nicole was Ryan&amp;#039;s interest in his surroundings. &amp;quot;On the last vacation, he didn&amp;#039;t seem to be aware of anything around him,&amp;quot; she recalls. &amp;quot;But this time, he was like, &amp;#039;Wow, let me check that out!&amp;#039;&amp;quot;  Still, her mind wasn&amp;#039;t completely at ease. At times, watching the group of kids made Ryan&amp;#039;s differences painfully apparent. While typical 3-year-olds want to join in the action with their friends \u2014 building towers together or putting on a puppet show \u2014 Ryan still preferred playing nearby but apart from the other children, simply looking at his book or a puzzle. One particular photograph she has from the trip breaks Nicole&amp;#039;s heart. The picture captures a 3-year-old girl who was part of their group trying to initiate conversation with Ryan; she was asking him if he wanted to go swimming, and he didn&amp;#039;t make eye contact or respond. &amp;quot;Ryan goes in and out,&amp;quot; Nicole explains. &amp;quot;It&amp;#039;s like a window opens and he&amp;#039;ll have a mini conversation, and then suddenly the window shuts and that ability to communicate back and forth is gone.&amp;quot;  By the last night of the vacation, Ryan was asking to go home, and on the drive back, Nicole and Tim laughed at their little ball of energy when he began clapping after recognizing a street near his house. Once home, he skipped right into the playroom and took out some of the favorite toys he used during therapy. He was ready to get back to his routine. Preschool Jitters Soon after unpacking, reality set in for Nicole: She had to face the tough decision of whether to send Ryan to preschool. She&amp;#039;d fought and won the battle to get him into a classroom where some children were typical and others had developmental delays. But as the first day approached, she wondered if school was the best choice for him at all. She wanted Ryan to be around other kids his age, but her mind was spinning with questions: Will Ryan lag behind the others in class, and will that make school a waste of his time \u2014 or worse, will he regress? Is it better to start next year, when his developmental skills, such as his speech, are stronger? Will he miss being around me too much, or not miss me enough? How can I manage an even busier weekly schedule, squeezing in 40 hours of at-home therapy, his sisters&amp;#039; activities, and school?  What&amp;#039;s more, that time crunch would dampen the Kalkowskis&amp;#039; hope of exploring other therapies to supplement Ryan&amp;#039;s Applied Behavioral Analysis (ABA), in which a team of tutors individually work with him for 40 hours a week to nurture his developmental skills. The couple was eager to try a listening therapy called the Tomatis Method as well as hippotherapy, which uses horseback riding to work on sensory issues. &amp;quot;Autism is complex, and each child has his own puzzle,&amp;quot; says Nicole. &amp;quot;The Lovaas ABA and his gluten-free, casein-free diet and supplements are big parts of Ryan&amp;#039;s puzzle. But Tim and I keep looking for the other missing pieces.&amp;quot;  Nicole was restless in the weeks leading up to school and toyed with ideas that might increase both her own comfort level and Ryan&amp;#039;s odds of success. For example, as a former special education teacher, she thought, What if I could stop by Ryan&amp;#039;s classroom on his first few days of school to ease his transition to the school system? (Unfortunately, she discovered that the school&amp;#039;s policy at the time wouldn&amp;#039;t allow this arrangement.)  An open house for parents at Ryan&amp;#039;s school left Nicole more confused. Alarms went off in her head when she noticed the wealth of pretend-play toys, such as dress-up clothes and a little kitchen, strewn about the classroom. Imaginative play is a skill that was robbed from Ryan by his regression and needs to be taught to him. Though his typical classmates might set up a restaurant near the child-size kitchen and start taking food orders, Ryan isn&amp;#039;t able to dream up such scenarios. Instead, he might walk up to the pretend refrigerator and simply open and close the door to see how it works. Once again, Nicole envisioned Ryan being left out of the classroom activity and felt crushed at the reminder of his shortfalls in skills.  Ultimately, Tim shed perspective on the situation one evening by pointing out that Ryan was only 3 and didn&amp;#039;t have to go to school. &amp;quot;Struggling with the decision wasn&amp;#039;t worth it when he was making great progress in his therapy at home,&amp;quot; says Tim, 39, who owns a contracting business. Nicole felt a huge sense of relief. &amp;quot;I realized that I wasn&amp;#039;t ready to let my baby go,&amp;quot; she says. &amp;quot;While other moms were pushing for separation for their 3-year-olds, I felt that Ryan and I had catching up to do. I wanted to drench him in my love and have fun with him.&amp;quot; By the fall, however, Nicole was once again reevaluating the best choice for Ryan, and she revisited the idea of sending him to school, perhaps later in the year. She&amp;#039;d planned to set up a meeting with the school to discuss the possibility of her being able to at least walk her son into the classroom at the beginning of the day. Looking Ahead In the meantime, with Ryan&amp;#039;s academic plans yet to be resolved, Nicole has made spending more one-on-one time with her little guy a big priority. Some weekday mornings they visit the park, and recently they signed up for a class at a local play gym, where all the kids are typical. Through the first three classes at the gym, Ryan was all smiles. He didn&amp;#039;t flinch at the loud children&amp;#039;s music that was playing or the kids zigzagging around him during free play. At the fourth class, though, Nicole was distressed when Ryan cried and clung to her through most of the activities. For months, he hadn&amp;#039;t had a tantrum like this in public, and immediately, she felt sadness for her son. &amp;quot;It seemed like something was bothering him, but he didn&amp;#039;t have the ability to express what it was,&amp;quot; says Nicole.  Though she didn&amp;#039;t know what triggered Ryan&amp;#039;s meltdown, she did know that giving in to outbursts can sometimes encourage the bad behavior. So calmly and lovingly, Nicole insisted that Ryan, who at times was crying hysterically, take his turn at rolling on his back on the big exercise ball and walking across the balance beam. Occasionally, when Ryan&amp;#039;s screams became disruptive to the other children or he refused to let go of Nicole, she carried him away from the group and tried to distract him with a colorful ball or a few minutes of tickle time, but nothing seemed to ease the tantrum.   Nicole worried about what the other moms thought. Did they feel it was cruel of her to keep Ryan at the play gym instead of taking him home? By the end of class, Nicole was worn out. Thankfully, the next day, after taking Ryan to the doctor, she had her answer: Her son had a double ear infection. Once again, relief washed over Nicole. During the next trip to the play gym, it was clear that Ryan had bounced back \u2014 he was having a blast.  The Kalkowskis have become skilled at rolling with the punches. Lately, when you walk into their home there&amp;#039;s a much greater sense of calm and happiness than there was a year ago, at the time of Ryan&amp;#039;s diagnosis. Even his sisters, Ciera, 9, and Ella, 7, seem more carefree. They&amp;#039;re big on sharing hugs and high fives with their little brother, and they&amp;#039;ve hung homemade signs in Ryan&amp;#039;s therapy room that say things like, &amp;quot;Ryan Rocks,&amp;quot; and &amp;quot;Find a Cure&amp;quot; to show their support. Ciera says, &amp;quot;I am so proud of Ryan. He learns more every day.&amp;quot; The family still has its bad days and challenges. Of late, Ryan \u2014 whose gluten-free, casein-free diet already requires cutting out dairy products and many types of grains \u2014 has become picky about what he eats. But the Kalkowskis are no longer grieving a loss or consumed by sadness. Tim often envisions a future that includes tossing a football and shooting hoops with his son. &amp;quot;Without any doubt, Ryan will be recovered,&amp;quot; says Tim. A few people who are close to the Kalkowskis try to keep the couple&amp;#039;s hopes and expectations in check. They ask, &amp;quot;Do you ever worry that you&amp;#039;re too optimistic about Ryan&amp;#039;s future?&amp;quot; Nicole&amp;#039;s reply: &amp;quot;Why would I worry about such a thing? I don&amp;#039;t think I can ever be guilty of having too much hope for the future of any of my kids.&amp;quot; How You Can Help Though there&amp;#039;s been a huge upswing in autism awareness and research in the last decade, many families coping with the disorder are still desperately waiting for answers. Here&amp;#039;s what you can do to push progress along.  Rally around autism research. &amp;quot;There are critical discoveries just beyond our fingertips that can only be realized through research,&amp;quot; says Rebecca Landa, Ph.D., director of Kennedy Krieger Institute&amp;#039;s Center for Autism in Baltimore. If your family is affected by autism, you can help speed the pace of findings by signing up with the first national autism research registry \u2014 known as the Interactive Autism Network \u2014 at ianproject.org. This network, which was created at the Kennedy Krieger Institute, harnesses the power of the Internet to help researchers find families to participate in studies and also provides scientists access to the world&amp;#039;s largest collection of autism data.  If your child does not have autism, you can join studies that help researchers understand how typical babies progress differently from those with autism. (To find out more about the High Risk Baby Siblings Research Consortium, go to autismspeaks.org/science/research/initiatives/babysibs.php.) And, of course, anyone can participate in charitable walks and events that raise money for autism research.   Build a culture of acceptance. Many parents within the autism community are met with stinging comments and stares in public. &amp;quot;Those unfamiliar with the disorder may believe children with autism are misbehaving when they have tantrums,&amp;quot; says Landa. If you have a family member with autism, consider speaking at local schools to explain the characteristic behaviors associated with the disorder and the best way to communicate with a child who has the condition. And all parents can talk to their children early and often about individual differences in people, says Landa. You may want to seek out opportunities that expose your kids to peers with special needs, such as volunteering at Special Olympics events.  Write to your state legislators.  Urge them to support legislation that requires insurance coverage for the diagnosis and treatment of autism spectrum disorders. &amp;quot;Most states don&amp;#039;t require private insurers to cover autism treatments and services,&amp;quot; says Alison Tepper Singer, executive vice president for communications and awareness at Autism Speaks. &amp;quot;Without coverage, families can pay up to $50,000 per year for services. In the process, many risk their homes and the education of their unaffected children.&amp;quot; Log on to autismvotes.org  to see if your state has yet to demand that health insurance providers cover autism diagnosis and therapies. What&amp;#039;s the next big issue REDBOOK should take on? Here at REDBOOK, we&amp;#039;re passionate about shedding light on issues that really matter to you \u2014 which is why we&amp;#039;ve covered topics ranging from autism to domestic violence to infertility to going green. What&amp;#039;s happening in your community that you feel we should tackle next? Email us at redbook@hearst.com (type &amp;quot;What Matters to Me&amp;quot; in the subject field) to let us know! "^^<http://www.w3.org/2001/XMLSchema#string>
<http://www.redbookmag.com/life/mom-kids/advice/a4330/child-autism-families/>