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What autism does to a mother

Learning to cope

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.

"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 play-dates, 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.'"

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