The fact that Ben, who has autism spectrum disorder, was nominated for the coveted title from a pool of 3,000 students would have seemed improbable to Sandy at one time. As a toddler, her son couldn’t string two words together. His vocabulary was limited to 20 nouns. Ben would throw “huge temper tantrums” in frustration, his mother remembers.
But there he was, standing alongside the school’s most popular students, hoping that he would be crowned homecoming king.
Ben was late to reach developmental milestones as a baby. But life was busy with three boys under the age of 5, so Sandy accepted the pediatrician’s reassurances that her youngest was progressing normally. When Ben failed to respond to his name at 18 months, Sandy and her husband, Glenn, grew alarmed. They had his hearing tested, but it was fine.
One day, Sandy spotted a speech pathologist at the local hospital where she worked as a nurse. She listened to Sandy’s concerns and suggested they have Ben assessed for early intervention services.
Sandy and Glenn took her advice and scheduled an assessment. A team of professionals spent more than two hours with Ben.
“All of a sudden, the nurse in me kicked in: No speech, lack of eye contact, no coordination — I put two and two together and said to the social worker, ‘Oh no. Does he have autism?’” remembers Sandy, who is now a nurse in the Division of Endocrinology and Diabetes at Children’s Hospital of Philadelphia (CHOP). Her instinct was correct.
The diagnosis left the family reeling. They turned to the Autism Integrated Care Program at CHOP where Ben came under the care of Susan Levy, MD, MPH, developmental and behavioral pediatrician and director of the Regional Autism Center at CHOP. They learned that every child with autism is unique and that a therapy that works for one may not work for another. The key was to find what would motivate Ben.
Finding his words
At Ben’s first speech therapy session when he was 3, CHOP speech language pathologist Paula Barson, MA, CCC-SLP, showed Ben how to coax sounds out of a toy animal game by “feeding” them cookies. She would let him have a turn only when he put the words “I want” in front of the word “cookie.”
By the end of the appointment, Ben was speaking the full sentence. Sandy was instructed not to give Ben anything he asked for unless he did the same at home.
“That broke it open for him. He wanted to feed the animals so badly. That’s what it’s all about with autism, figuring out what the reward is,” she says.
As he continued speech therapy and learned to express himself, Ben’s temper tantrums dwindled. Sandy credits her son’s progress with the early intervention services and the professionals at Children’s Hospital’s Autism Integrated Care Program, where he continues to be treated. Ben also participates in research studies at the Center for Autism Research in hopes that he might contribute to finding the disorder’s cause.
Pursuing his goals
Learning what motivates Ben was the Hartranft’s first challenge. Keeping him safe without dampening his spirit is ongoing. Ben had no fear as a little boy and would run into traffic if something across the street caught his eye. Now that he’s older, Ben pursues goals with the same single-minded abandon.
Ben’s parents constantly wrestle with how far to let their youngest son go. Do they encourage him to follow his dreams? Or do they stop him before he can fail?
Ben’s quest to be North Penn High School homecoming king is just the latest example. He watched the homecoming ceremony as a junior and declared he wanted to be king the following year. Sandy knew her son was well-liked at his school — so much so that he has been dubbed “the mayor of North Penn” for his outgoing, friendly nature.
Still, Sandy worried. She didn’t want her son to be hurt if he lost. Sandy suggested Ben put the idea aside until he started his senior year.
When school started the next fall, Ben was ready. Word spread that he wanted to be homecoming king and his classmates urged him to run so they could vote for him. First he was nominated. Then he was named as a finalist. Ben celebrated each step toward the crown while his parents gently reminded him that he might not win.
Then the day arrived. At halftime, the homecoming court was called out onto the football field. Ben stood hunched over, his fingers crossed tightly behind his back.
“Then they called his name,” says Sandy. “He ditched his date and tore across the field and sprinted to the crown. Everybody just erupted into applause for him. They really do adore him,” she says. “All of that from a kid who only knew 20 words.”
Ben wore the crown all night long.
To get to know more about Ben and the impact he has on his classmates and community, watch this video produced by North Penn TV.
Originally published November 2016