Tracy Scheibel squatted for a picture beside 50 friends and family. Scheibel’s son Carter stood next to her beaming. Carter’s a fourth grader on the autism spectrum, and those 50 people, through donations, had just raised $2,000 for autism awareness and research. This, the 2016 Central New Jersey Autism Speaks walk, was their fifth year as a team called Carter’s Crusaders. Since 2012, they had collected $13,000.
Autism Speaks offers individuals the chance to start a team like Carter’s Crusaders online at autismspeaks.org, and with such high levels of engagement, Autism Speaks has set a fundraising goal of $215,086 for this year’s event Sept. 24.
Held on the Princeton campus of ETS, the walk fosters understanding and acceptance of the autism community. For parents, there are booths which advertise local resources and for children, there are activities including Mad Science, rock climbing and face painting. Later on, participants crowd the start line and make a lap around the verdant fields.
It’s a big day for all involved, but for children like Carter, the experience is magical. The Hamilton resident calls himself “king for the day.”
Carter Scheibel was born on Nov. 22, 2006. As a baby, he spoke little and his outbursts were gibberish. He was sensitive to loud noises and crowds and clung to his father during family gatherings.
Scheibel, a teacher at Eden Autism Services, began to suspect her son was on the autism spectrum in preschool. He had problems with communication. Although verbal, he was unable to convey his feelings and resorted to crying and throwing toys. He walked on his toes and slapped his knees when excited. Moreover, he didn’t play with his peers; he played beside them. These were all signs pointing to an autism diagnosis.
A year later, Scheibel took Carter to Children’s Specialized Hospital where her suspicions were confirmed. Carter was diagnosed with autism spectrum disorder, or ASD.
“I wasn’t shocked because I’m in the field,” Scheibel said, “but it was at that point that I decided: we need to get help immediately.”
She researched extensively, discovering groups such as Autism Speaks, and sought for her son a wide range of services—occupational therapy, physical therapy, speech, even participation in a social skills group. For children on the autism spectrum, early intervention is crucial, and with Carter not being diagnosed until age 4, Scheibel felt she had to maximize her resources.
That caused some tension in the Scheibel home. Her husband, Derek, believed she was overreacting.
“He thought that because of my work at Eden, I thought everyone had autism,” Scheibel said. “Well, the fact was Carter had Asperger’s, a mild form of autism, and although my husband was in denial at first, once he started seeing everything I was concerned about, he wanted to get the help needed.”
Scheibel’s mother, Francis Walis, was apprehensive as well. She worried that Scheibel would have difficulties parenting, a worry that isn’t misplaced. According to a survey of 219 parents of autistic children taken by the Autism Research Institute, more than 80 percent reported being “stretched beyond limits,” with mothers reporting higher stress levels than fathers. Fortunately, since Scheibel had worked with children with autism, she had fewer qualms about caring for Carter and found tending for him natural.
‘I wanted to be a part in something local happening every year. I wanted Carter to have that same support and comfort.’
Once Carter showed signs of progress, everyone was more at ease. One improvement was Carter’s cooperation in public. Scheibel recognized Carter’s frequent meltdowns and hesitance to visit new places, but she decided it would be a rewarding, nonetheless, if they visited the beach. For their vacation, she implemented a checklist for her son to follow. First, build a sand castle. Next, go into the water. Then, look for shells and watch a video on the blanket. Once Carter had an established routine, he got more comfortable, and the family ended up enjoying their time together.
Before Carter turned 5, Scheibel decided to participate in Autism Speaks’ annual walk. She had heard about the organization’s comprehensive support toward individuals on the spectrum and hoped to get involved.
“I wanted to be a part in something local happening every year,” Scheibel said. “I wanted Carter to have that same support and comfort.”
She deemed the mile-long route along the paved paths appropriate for Carter. Recruiting friends and relatives, she started a team of 10 members named Carter’s Crusaders. Although clouds dimmed the morning sky and her group had forgotten their tents for that first walk, Scheibel believed it was a great learning experience. In the following years, they remembered to bring food and developed better uniforms. Their first shirt, for example, was basic, but last year’s shirt was embellished with a shield to represent crusaders.
“It was hard at first establishing the group, but once people see Carter’s excitement, it’s worth it,” Scheibel said.
The next year group added 20 more people, and has since grown to 50 members. Coordinating the team has become a sizable task, and Scheibel starts planning their uniforms and catering months in advance.
“It gets to be a lot, but I do what’s best for Carter,” Scheibel said. “To see people coming out and saying, ‘I give money because I know I couldn’t do what you guys do every day.’ But I don’t necessarily believe that, but just knowing everyone close to me wants to see Carter thrive and be successful is amazing. Especially his brother Preston. There are special people in our lives that show us we’re not alone.”
* * *
An ASD diagnosis hasn’t stopped Carter from making progress socially and in school. As a 4-year-old, he attended a half-day handicapped preschool, Kindergarten Prep, where he spent two hours every day with both special education and inclusion, or non-special ed students.
In 2012, he transitioned to Sunnybrae Elementary in inclusive classes and will continue to attend the school as a rising fifth grader.
“There’s a special ed teacher and a general ed teacher, and the (other) kids don’t know why the second teacher is there,” Scheibel said.
To reduce his stress and anxiety, Carter also receives daily schedules and additional time to complete assignments.
At home, Scheibel is teaching Carter to identify social cues, which are often challenging for kids on the spectrum.
“When there is a topic he is really interested in like the NFL, Carter will go on and on,” Scheibel said. “He doesn’t get the facial expressions like eye rolling or yawning. Likewise, he would take out the retainer in his mouth and say, ‘This is gross.’”
Fortunately, Carter’s classmates have been understanding; some of his peers have even joined Carter’s Crusaders. As the group continues to expand, friends have traveled from Connecticut, Illinois and New York to show support.
One team member, Lawrence resident Andrea Lobato, joined to not only support Scheibel, a former colleague, but also to support all children on the spectrum.
“It’s been awesome to watch Carter grow and meet so many other people,” Lobato said.
This year the event will begin at 10:30 a.m., with registration starting at 9. The walk and the activities are free and open to the public. Individuals also may sign-up as a single walker or simply donate online.
In addition to walking at the Autism Speaks event annually, Carter’s Crusaders hosts fundraisers which have been at barber shops and grocery stores. If customers donate a dollar, they are given a puzzle piece—a symbol in the autism community—to place on the wall.
By raising awareness and funds, the team hopes to preach that autism isn’t a derogatory label. Rather, it marks individuality and should be celebrated.
“It’s perfectly fine to be the way you are,” Scheibel said. “All of Carter’s quirks, it’s part of who he is, and I approve of that.”
The Central New Jersey Autism Speaks Walk is Sept. 24 at ETS’ Princeton campus, 660 Rosedale Road in Lawrence. For more information, visit act.autismspeaks.org.