Boy

It was not your typical pick-up line. Senator was a sophomore communication student walking through the lobby of Van Pelt College House when she ran into fellow resident Ned Batchelder EAS’84. The bearded, pony-tailed engineering major was on the way to the Wawa convenience store to buy some milk. Did she want to come along? Senator turned him down, thinking Cute guy, but weird. When she bumped into him the next day, he flashed a devilish grin and said, “You missed a really good time.”

“I realized he was funny, in addition to being cute, and not a typical guy at all,” Senator says. “That was the moment I fell for him.” (Batchelder, now a software engineer for Hewlett Packard, recalls chatting with Senator at a house party earlier that year and noticing “four or five other guys” vying for her attention. “I thought this was going to be a stiff competition,” he says. The milk run was not intended to be a date, he claims, but “she thought I was nuts.”) They married right after graduation, staying in Philadelphia while Senator earned her master’s degree in Russian intellectual history (“a fantasy lifestyle”) and Ned worked in an engineering lab. Then the couple moved to Boston, where Nat was born three years later.

Senator couldn’t wait for motherhood. “It was all I could think about,” she says. “Even when I was playing video games, my user name would be babynow.” After she arrived home with her beautiful blond baby, however, that eagerness was replaced by postpartum depression and self-doubt. Shouldn’t her son act more, well, adoring of her? The pediatrician didn’t seem concerned. What sent Senator back to the doctor was Nat’s emotional meltdown two years later at the Passover seder hosted by her aunt. During the entire feast he refused to leave the front door.

Even after Nat’s diagnosis, Senator and Batchelder realized they didn’t have a clear guide to follow for their son. Two decades ago there were no Internet discussion boards, no doctor’s handouts on autism, and few books on the subject. “Nobody knows” what to do, the pediatrician told them. “You have to determine what is the best approach for him by observing.” As a result, they tried or at least researched many therapies, from gluten-free diets and neurofeedback to music therapy and medications. “We started to feel there were going to be a lot of trends,” Senator says, “and we started to be suspicious of most things that were new.”

Over time they found that what was most effective for Nat—though far from miraculous—was guiding his behavior through positive-reinforcement techniques that were used in his school (one of many programs they tried enrolling him in) and breaking new tasks into smaller steps.

Senator, meanwhile, turned to therapy and support networks of like-minded people to cope. As she explains in Survival Guide, much of her stress stemmed from her own perceptions of autism, how she blamed herself, and how she felt others viewed Nat because of his disability. When Senator blurted out the news of Nat’s diagnosis to her son’s playgroup, for instance, she was met with uncomfortable silence from the other moms. It was hard not to see everything he did through the lens of disability. She cringed at the dirty looks when Nat tossed sand in kids’ faces at the park. What might be seen as an episode of over-exuberance in the average child convinced her how different he was.

Gradually, though, Senator began to connect with others through an autism support group. “I had a friend, Sheila, who had a kid like Nat and we would get together at the playground and really joke about our lives and how different we felt from the other mothers around us and all their perfect children.” She started to feel less like a victim.

Even though she may not have realized it at the time, Senator had already begun taking concrete steps to help her son before his diagnosis. As Thanksgiving at her aunt’s house approached around the time of Nat’s third birthday, Senator knew she didn’t want a repeat performance of his previous meltdown. New experiences seemed to upset him though. If only there was a book that could show him everything to expect about the holiday, she told Batchelder.

“Why don’t you make the book yourself?” he asked.

Senator took up the challenge. She created a “crisis storybook” detailing everything that might happen at Thanksgiving, using basic sentences and photos of family members. Nat wanted to hear the story read over and over; when Thanksgiving came, he was ready to participate. Following that success, Senator made stories to prepare Nat for other occasions, including a Christmas visit with Ned’s family, a house move, and a trip to Cape Cod.

Senator loved the Cape, where she had vacationed as a girl. The first trip there with Nat had been a disaster, however. He cried constantly, as if he couldn’t understand why anyone would want to spend time on a beach, and they had ended their vacation early, driving home in the rain. Determined to make this next trip work, Senator explained every beach-related activity in pictures and simple language.

“Everything that could potentially be a tantrum I’d cover, like outdoor showers and going to a restaurant,” she says. Though it was hardly a stress-free time, vacationing together made Senator feel they were a “real family,” she says. “It started feeling like it was going to be all right just as it was.”

Though Nat had his crisis storybooks, Senator didn’t have such a resource to help her navigate the unexpected. When Nat was seven, he went through a six-month phase of not sleeping every other night. Senator found herself stationed outside her son’s bedroom door, awakened by his repetitive laughing. “It was hellish,” she recalls. “We were miserable. I don’t know how my husband Ned went to work every day.”

One afternoon Senator packed a bag and announced to her family that she was leaving. “I need sleep,” she told them. “It was kind of a crazy moment.”

She got as far as a neighbor’s house across the street. The neighbor, who was about her mother’s age, told Senator about problems she’d faced with her own daughter years ago. An hour later Senator returned home, buoyed by this new connection she’d made. “Until then we hadn’t really talked to anyone around us about what was going on.” Once they understood, Senator’s neighbors were supportive, even when Nat would ride his bike through someone’s garden. “People on the street started to say, ‘Oh, that’s Nat. That’s OK.’” Medication brought more relief as Nat started to sleep well again, and Senator gathered her strength for his next phase.

 

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COVER STORY: Notes to a Younger Mother By Susan Frith
Photography by Jared Leeds

©2010 The Pennsylvania Gazette

Nat, Ned, Susan, Ben, Max.

 


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©2010 The Pennsylvania Gazette
Last modified 8/25/10