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.
"I worried that Ryan was headed for severe autism"
Mondays with Sue provided some reprieve from Nicole's demanding schedule, but she continued to spend hours each day doing therapies with Ryan. Some were techniques that she'd learned from the Nevada Bureau of Early Intervention Services (NEIS) coach. The coach had been coming to the house for the past few weeks to work with Ryan and to show Nicole and Tim how to do certain behavioral therapies, such as "heavy work," in which Nicole would have Ryan walk wheelbarrow-style or play with a weighted ball in order to help him adjust to various sensations.
After reading the book Engaging Autism, Nicole also tried what's known as Floor-time — a method that would later be used in Ryan's occupational therapy sessions. Floor -ime focuses on helping a child with autism engage in back-and-forth communication — a skill that many children with this disorder lack. With this form of therapeutic play, a parent will join in on an activity that the child is already interested in. For instance, if he's rolling his toy car over a chair, you might grab another toy car and come around from the other side and bump yours into his, so that the two of you interact.
While Nicole remained hopeful that Ryan would make substantial leaps in progress once his speech and occupational therapy (OT) sessions began at the end of September, she continued to trawl the Internet and read books to uncover more treatment options. Her research turned up a promising approach: one-on-one, in-home applied behavior analysis (ABA) — a widely used technique that's supported by years of research studies. She'd need to hire a tutor who would then be trained by a consultant versed in the method of ABA she'd chosen (known as Lovaas), and the wait to start that training was three months. Nicole put Ryan on the waiting list.
When Ryan's speech and OT sessions finally got started, Nicole's feelings of hope were quickly dashed. The seasoned therapists weren't having much success in getting through to him; Ryan screamed throughout the sessions and became hyperactive, as if someone had flicked a switch. "I assumed that as soon as therapy got under way, progress would happen like magic," says Nicole. "So when his therapists were telling me they weren't sure how to help him, it was scary. I really worried that Ryan was headed for severe autism."
Desperately seeking a treatment that Ryan would respond to, Nicole found the Talk About Curing Autism website; actress Jenny McCarthy, who has a 6-year-old son with autism, is the organization's spokesperson. "With tears running down my face, I watched a video on the site about kids who had regressed and were recovering, some to the point of being considered 'typical' children again," says Nicole. "It made me believe recovery was possible for Ryan."