By Nancy Rones
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. In part one of REDBOOK's series about raising a child with autism, Nicole Kalkowski and her family were overcome with shock and confusion when their outgoing and vivacious toddler, Ryan, began to lose his language and social skills; his sudden problems with speech and disinterest in hugs from his sisters were just the start of his perplexing symptoms.
After an agonizing search for answers, Nicole and her husband, Tim, discovered that Ryan, now 3, has what many call regressive autism — he appeared to be developing normally, but began to backslide at 17 months. In this installment, we witness the painful toll Ryan's condition has taken on Nicole and follow her and her Las Vegas family as they navigate the murky waters of treatment.
On a Sunday morning in September, about 30 parish-ioners squeeze into a small room located just off the main sanctuary in Faith Lutheran Community Church. Nicole Kalkowski and her family have been active members of the church for the past five years. And today, the congregants have gathered to pray for Nicole's son, Ryan.
Nicole sits on a small altar with daughters Ciera, 8, and Ella, 6, huddled together on her lap. The 35-year-old mom wishes her husband, Tim, could be with her, but the couple agreed that it would be best for him to stay home with Ryan, who, in a packed church, would have been screaming and crying inconsolably. Slowly, the church members begin to hold hands and form a circle around Nicole and her girls. Most people have tears in their eyes.
No longer able to keep her composure, Nicole starts sobbing. As she wipes away her tears, everyone bows heads and listens as Bible passages are read. Then, a teacher at the church school presents Ciera and Ella with a book of prayers created by their classmates.
As the vigil ends, the well-wishers hug Nicole and her daughters. Ciera's eyes well up as she whispers to her mom, "Ryan is really special."
"My days were filled with silence"
Given all the anxiety and heartbreak they had endured in the past year since Ryan's development regressed, the Kalkowskis — Nicole in particular — were in sore need of this kind of support. Thanks to Ryan's erratic behavior and demanding therapy schedule, which would devour large chunks of her time every day, as well as her own deep sadness and reluctance to lean on others, Nicole was leading an increasingly and painfully isolated existence.
Typically, Nicole's social life would flourish in September when her girls returned to school. Her calendar was always packed with playdates, volunteer work, and plans to meet other moms for coffee. But Ryan's fierce tantrums in public places — even just on quick errands to Target — crushed any return to normalcy. Before summer break, she chatted happily with other moms at school drop-off. Now, she preferred to be invisible on school grounds.
"Friends didn't know how to react," says Nicole. "In passing, I was constantly asked, 'How are you doing?' I dreaded this question. 'Fine,' was a lie, and I needed more than 10 seconds to really answer. And I didn't want to break down in front of the girls anyway. So I'd walk into school with big, dark sunglasses on and leave quickly to avoid conversation. In the car, the tears poured out."
Gone, too, was the weekly playgroup Nicole hosted at her house for church friends and their kids. Like many children with autism, Ryan has heightened sensitivities to strangers as well as to noisy environments; these factors either set off screaming and crying fits or caused him to hide. Nicole knew that the playgroup would be uncomfortable, possibly intolerable, for her son. "I didn't want people looking at Ryan acting up and thinking, Wow, that's really awful," she says. "I was protective of my son and didn't want him to be judged." Sometimes when visitors came over, Ryan retreated to his parents' bedroom upstairs, pulling Nicole with him. "I'd have a family over for a barbecue and instead of socializing, I hid in my bedroom with Ryan," says Nicole. "If I tried to leave the room, he'd get mad and push me back in."
While a few friends hung in there, the phone calls from others faded. "Life went on for them," says Nicole. "But without the phone ringing, and without being able to run errands because of Ryan's behavior, my days were filled with silence." Nicole often cried to her husband, Tim, about the loneliness. Tim, 38, who owns a contracting business, realized how suffocating the situation was for his wife. "I had work as an escape," he says. "But autism was every minute of Nicole's day."
A part of Nicole simply shut down. "I did put up a wall," she says. "When someone reached out, I didn't jump. I just felt like, 'There's nothing anyone can do to fix this.'"
"I kept turning down help"
After the prayer vigil, Nicole's "wall" began to crack. "I felt so cared for during the vigil, which was very healing," she says. But it was a new friend, Sue Stigler, who finally convinced Nicole to truly drop her defenses.
Sue and Nicole were in the same social circle at church, but they weren't close. So it surprised Nicole when the 41-year-old mom, who has a son Ryan's age, took on the role of best friend. Sue began showing up at her door throughout the summer wanting to help — she stopped by with uplifting greeting cards, cookies, chocolate, and offers to shop for groceries and even to clean Nicole's house. "I kept turning her down," says Nicole. "I wanted help, but I felt like I was drowning in everything I needed."
Sue persisted, and even packed Nicole's suitcase for a family trip to Laguna Beach, CA, with Tim's friends and their families. Nicole had contemplated canceling the vacation because going away with Ryan seemed too hard. But Sue convinced her that it would be a good chance for the family to have some fun. "I'm so glad Sue pushed us to go," says Nicole. "I bonded with the wives of Tim's friends, who were very understanding on the trip — probably because they got a chance to see all my day-to-day challenges firsthand."
The following month, Nicole finally felt comfortable enough to ask Sue for a favor. Every day, Nicole drove by a park near her house, a place she used to go with other moms but had been avoiding recently because she knew Ryan wouldn't react well to all the activity. She missed being there. Hesitantly, Nicole asked Sue if she'd be open to playdates at the park every Monday with their sons. Sue was happy to oblige. "When I worried that Ryan would scream the whole time, Sue said, 'Oh, please. Like my son isn't going to scream. They're 2 years old.' Sue's so lighthearted and doesn't make it seem like Ryan is so much different from her son," Nicole says. "She's helped me laugh more, and just makes me feel like a normal mom."
Nicole is also grateful to Sue for the gift she gave Ryan — a friend of his own. "One big fear any mother in my situation has is that her child won't have friends," she says. "After a couple of playdates, Evan would climb into his car seat as he and Sue were getting ready to leave and say, 'Ryan, you my friend.' It touches me every time I hear that.
"I realized that there are people who really do want to help; you just have to let them know that they can."
"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 Floortime — a method that would later be used in Ryan's occupational therapy sessions. Floortime 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."
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 momspeak, 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.
"I am determined to save my little boy"
Ryan's accomplishments made Nicole eager to meet other mothers to compare notes about treatments. "Once your child shows one sign of hope, you're hooked and you get even more committed," Nicole explains. She got in touch with Families for Early Autism Treatment, and in early November, she, Tim, and their kids attended a picnic that was hosted by the organization. While Nicole appreciated talking to other moms about which treatments worked for them, she felt that it was her daughters, Ciera and Ella, who probably benefited the most from the event. "It was good for them to see that they aren't the only siblings in the world who deal with autism," says Nicole.
A month later, Nicole saw information about a Walk Now for Autism event and jumped at the chance to form her own team. In less than a week, she recruited 30 friends and family members, who raised more than $2,000 for autism. At the walk, Nicole received new information about local treatment providers — plus, a discussion with one of the walk's organizers about the therapies Ryan was getting prompted Nicole to repeat her requests for more hours from NEIS. That request was granted, and as a result, Ryan also joined a weekly NEIS playgroup where he can interact with typical kids.
The highlights of the day didn't end there. Nicole and her family met two celebrity moms who each have a child with autism: Jenny McCarthy and singer Toni Braxton. "It was a surreal moment for me," says Nicole. "I had the chance to tell Jenny how much she touched my heart when I needed hope so desperately. I told her that her book helped save my son, and that it started a fire in me to fight for him. Jenny actually choked up while she was listening to me. It wasn't about meeting a celebrity for me; it was bigger than that. The whole walk filled me with such positive feelings. Looking around at all the people who turned out on a cold, windy day to fight autism was so hopeful and uplifting for me. I realized that sitting at home being depressed was useless; the walk brought me to a new place, and it reinforced my determination to save my little boy."
Look for the next installment of Living With Autism in the July issue of REDBOOK.
Originally published on: May 1, 2008
Related content on redbookmag.com
- Living with Autism: Losing My Little Boy
- 3 Perspectives on Treating Autism
- The Shadow Side of Motherhood
- Quiz: What's Your Mom Personality
- The Mom Moment Blog