Nicole Kalkowski knows that beyond the stress, fear, and family turmoil that come with learning that your child has this devastating disorder, there is also a devastating aloneness. In our second installment of Living With Autism, we follow this mother of three as she struggles to save her son and finds help - for her children and for herself - in unexpected places.
Delving deeper into the site, she read about a gluten-free, casein-free (GFCF) diet that improved symptoms in some kids. Removing gluten meant cutting out grains such as wheat, barley, and oats; eliminating casein amounted to avoiding all dairy products. Nicole thought, There is no way. Ryan had so many aversions to food textures, and she was scared to narrow his already limited diet. But a couple of weeks later, she found herself glued to McCarthy's appearance on Oprah. McCarthy talked about her son's treatment and recovery, part of which she attributed to the GFCF diet. "In mom speak, she broke down the idea of the diet — getting rid of toxins in the body and putting in what it needs — and it made sense," says Nicole. Immediately after, Nicole headed to the bookstore, where she sat on the floor and raced through McCarthy's book Louder Than Words to find out more.
Nicole was sold. That night, she went to Whole Foods, searching for packaged foods labeled "gluten-free, dairy-free" that she could gradually introduce into Ryan's diet. "I was in the supermarket for such a long time, reading all the labels," says Nicole. "Besides worrying about the ingredients, I was also trying to find gluten-free versions of foods that Ryan was already eating, like crackers and pasta, to make the transition easier." Surprisingly, Ryan ate many of the foods that Nicole brought home, like rice pasta and dried blueberries. But she also had her share of flops. "It's always trial and error, which can be frustrating because the foods are expensive."
Inspired by McCarthy, Nicole also met with a Defeat Autism Now! (DAN!) doctor, a health-care practitioner who uncovers the physiological conditions that may be causing autistic behaviors and then treats them through nutritional changes, including a GFCF diet (a DAN! practitioner's credentials can range from a traditional M.D. to homeopathy training ). At Nicole's meeting, Geoffrey P. Radoff, an M.D. and doctor of homeopathy (M.D.H.), took an extensive family history, provided a list of lab tests (blood, urine, and stool) for Ryan to undergo, prescribed a variety of nutritional supplements, and instructed the Kalkowskis to stick with the GFCF diet. Radoff made no promises to Nicole about Ryan's improvement, except that the diet would likely relieve her son's gastro-intestinal problems — a common issue in children with autism. Ryan's belly was always very gassy and bloated, and he'd often push on his lower abdomen in discomfort. Nicole was thrilled just to have another treatment begin.
But that optimism didn't compare to the joy that Nicole and Tim felt about three weeks after Ryan started his therapies and new diet. Standing in their kitchen, Tim was consoling Nicole, who was crying after having a particularly stressful day. When they looked over to Ryan in the next room, their son, who during the last couple of months had stopped making eye contact and rarely interacted with his parents, was staring straight at them. Ryan then picked up a toy school bus and ran it over to his mother and father with a smile. "We were both amazed, and Tim and I looked at each other like, Did that just happen?" recalls Nicole. "You're scared to see progress because you don't want to lose it again. After a few minutes, I even took a picture of Ryan, so that I could remember that moment."
In the days that followed, Ryan had more breakthroughs. His once-empty eyes gained some spark. His "fisted" hands opened and he began feeding himself again. At his OT and speech sessions, he used new words, such as "go" and "fun," gave big smiles, and was responding to the therapists. "There's still plenty of work to do, but Ryan is making fast progress," says Beverly Burnett, an occupational therapist who owns Play and Learn Pediatric Occupational Therapy Center in Las Vegas, where she works with Ryan.
Ryan's string of successes had his sisters particularly overjoyed — especially since their adorable little brother began joining them again at night for a story and cuddling, a routine he'd cut off a year and a half earlier.