"I'm on a mission to get my son better -- and help others"
As Ryan faces new and frightening setbacks in his struggle with autism, his parents search for answers and find both purpose and peace in their new life.
Toxic CluesRyan's overabundance of yeast was only one of several issues his doctor wanted to address. After reviewing the results of tests that analyzed Ryan's blood, stool, and urine, Radoff had found a number of irregularities, including high levels of aluminum, mildly high amounts of mercury and lead, a lack of some key vitamins and minerals (children with autism often have trouble absorbing various nutrients), and an infection in his digestive system. "All of these issues can lead to symptoms of autism, such as sleeplessness, head banging, and digestive problems," Radoff told Nicole and Tim, who listened to the report in disbelief. "I was thrilled to finally get answers," says Nicole, who was hungry for clues about what may have been behind her son's symptoms. "But I was also so angry about the amount of metals in Ryan's body," she adds. "I wondered where they came from and what I might have done to cause those problems. I felt like in some way I hadn't protected my son enough." With tears in her eyes, Nicole grilled Radoff about possible sources of the metals particularly the aluminum, which was very high. (Some studies in mice have shown that overexposure to aluminum can damage the nervous system, and, though the results have been mixed, some research in humans has found that high levels of the metal in the body may cause Alzheimer's disease.) Radoff explained that there are many sources of aluminum in the environment, from certain types of cookware to tap water to canned food. Nicole shook her head, saying that her family barely used any of those things. Then Radoff mentioned that some vaccines contain aluminum. According to the Centers for Disease Control and Prevention (CDC), the small amount of this metal included in vaccines has been used safely for 75 years and makes immunizations more effective; without it, a child might need more shots or have less protection from disease. But when Nicole heard the word vaccines, her stomach dropped. "Ryan's regression began right after he had five shots at 17 months," says Nicole. "I do believe my son has genetic differences that are partially to blame for autism, but my gut always told me that vaccines were connected too. Now, I was finally confronted with that fact. Since Ryan's diagnosis, I've had friends and even strangers who see the 'Think Autism, Think Cure' bumper sticker on my car ask me what I think about vaccines and whether they should get their child immunized. My answer is: 'I'm not anti-vaccine, but you just might want to ask your doctor about a slower vaccine schedule so your child doesn't have to get so many at once.'" (See "Do Vaccines Cause Autism?" on Redbook.com for more information on the controversy around kids' immunizations.)
Mom Turned AdvocateResolving to finally stop obsessing over what role she may have played in Ryan's condition, Nicole decided to direct her energy toward something far more productive: using her experience to help others who are in her situation. "At first, I just didn't want to accept autism, and I didn't have much interest in making friends with women in the [autism] community," she says. "I was strictly on a mission to get my son better. Now, I'm proud to say that I'm an active member of this community."Nicole has joined the board of Families for Early Autism Treatment (FEAT); she pitches in at fund-raisers and volunteers with programs that provide emotional support to families. "To see a big group of people who care so much about fighting autism makes me feel that change will happen," says Nicole, who has gained her own incredible support group through FEAT. "Many of these women have been on the journey longer than I have, and they have taken me under their wing," she says. "These amazing, involved mothers really celebrate their children, and they continue to give me so much strength." Her work with FEAT has given Nicole validation and hope, but her participation in another group, the education committee of the Autism Coalition of Nevada, has given her a voice. Nicole, formerly a special education teacher, is now able to put her background to work, brainstorming with prominent local politicians, medical experts, educators, and fellow parents during teleconferences about ways to improve early intervention and the educational system for those with autism in Nevada. "Instead of just screaming in my kitchen about things that are wrong with the system, I can give meaningful feedback and hopefully make it better for families," she says. "It's also a good feeling to have these important people in the state listening to what I have to say."Less than a year after she learned that Ryan had autism, Nicole now also talks one-on-one with mothers whose kids have just been diagnosed, explaining to these women what to expect and reviewing treatment options. "Considering how depressed I was at one point about autism, I'm sometimes shocked by how encouraging and positive I am when I speak to mothers about it," says Nicole. "I feel my own spirit lift during those talks." Tim is proud of his wife for giving so much of herself, and recently he, too, met with a dad whose two sons had been diagnosed. "When Nicole and I were feverishly looking for answers, one gentleman who had a son with autism took 45 minutes out of his busy day to talk to me about what to expect," says Tim. "He talked to me from the guy's perspective, and he didn't sugarcoat things. I remember how much that talk meant to me, and I was happy to help the next person. It's a horrible thing to admit, but before this was all happening with Ryan, I never really did anything to help people beyond my family and friends. Our experience with autism has put us in give-back mode."
A New AttitudeOne day, after Nicole hung up the phone with a desperate mother who was searching for information about autism, Ryan ran over to give his mom a hug and a feeling of gratitude about her life rushed over her. Holding her son tightly, she broke down in tears. "I had always imagined the perfect family as the commercial version the one with the white picket fence," says Nicole. "So when Ryan was diagnosed, I was not only hurting for my son, but it also felt like my own dreams were shattered. I wondered, How could I ever have joy and a 'normal' family life with autism? It's something that I wrestled with inside." But in that moment, Nicole felt incredibly happy. She was thankful for her loving husband, her two beautiful girls, and an adorable son who has made unbelievable progress in a relatively short period of time. And she was thrilled to have found herselfin helping other families facing autism. "I never would have believed that the worst thing to happen to me could actually bring me to my purpose," she says.As Nicole finally begins to embrace her complex and demanding new life, she is also learning to rely on help from others to keep that life running as smoothly as possible. Ryan undergoes intensive Lovaas Applied Behavioral Analysis (ABA), which involves tutors who work with him at home for about 40 hours a week on various developmental skills and Nicole puts that time to very good use. "While Ryan is getting the attention he needs, I can take care of chores, occasionally have lunch with a friend in another room, or spend time focusing on my girls, whom I've really missed during all this," says Nicole. She has even started a sweet ritual with her daughters to reconnect with them: Every day, she writes a little loving note in each girl's journal. Her daughters write sweet notes back to their mother and rush to place their journals on her pillow. While autism tears some families apart, the Kalkowskis have become even closer, cherishing their time together. They all go together to the girls' soccer games on Saturdays (Ryan claps and cheers for his sisters), and after church services on Sunday, the family looks forward to their hikes in nearby Red Rock Canyon. "Autism has definitely forced us to adjust our lives," says Nicole, "but now I know that I can find happiness in it all."
Start from the beginning on Redbook.com:Part 1: Living with Autism
Part 2: What Autism Does to a Mother
Part 3: "We Need to Pull Ryan into This World"
Reprinted with Permission of Hearst Communications, Inc. Originally Published: "I'm on a Mission to Get My Son Better and Help Others"