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Jackie Ceonzo sensed that something was off when her eldest son, Joey, began experiencing seizures at just 18 months of age.
"That marked the start of our quest to consult various doctors along the East Coast," Ceonzo shared with ABC News. Almost two years later, Ceonzo and her husband Joe finally received a diagnosis. "Autism entered our lives when he was around 3 years old," she explained.
Joey, who was unable to communicate verbally, read, or write, was diagnosed with "severe autism," a neurodevelopmental disorder that medical professionals were still in the process of understanding nearly three decades ago.
“There was a significant lack of awareness about autism at that time,” Ceonzo remarked. “Whenever I mentioned that he was autistic, people would respond with, ‘Oh, so he must be good at drawing?’ It felt like navigating through uncharted territory, and it was really frustrating.”
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Ceonzo recounted that when Joey was 8 years old, his younger brother Andrew, who was just 4 and progressing at a typical rate for his age, was engaged in school activities and playdates. In her search for a productive outlet for Joey, Ceonzo attempted to sign him up for a swim program designed for children with special needs. Unfortunately, she was informed that Joey was not eligible because he was deemed “too severely autistic” by the program staff.
“Just picture hearing that,” Ceonzo remarked. “You believe you’re part of a community, only to be informed that you’re not welcome. So, what are your options if you can't access the special needs program with your child who has special needs?” Ceonzo continued. “Joey was all alone, so I thought, ‘I’ll create a space for you,’ and that’s exactly what we did.”
This realm is known as SNACK*, which stands for “special needs activity center for kids and adults.” Its mission is to support individuals with disabilities in flourishing and achieving lives of independence and meaning.
In 2003, while continuing his career in the textile industry, Ceonzo launched a weekly two-hour class for a small group of children, including Joey. This initiative marked the first of its kind in New York City.
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Two decades later, her nonprofit has expanded into a program that operates every day of the week, offering a variety of classes and activities such as cooking, art, music, and swimming for over 200 participants, among them around 50 adults, whom Ceonzo refers to as “the overlooked demographic.”
The Centers for Disease Control and Prevention estimates there are at least 5.4 million adults in the United States with autism.
According to the AJ Drexel Autism Institute, 87% of young adults with autism experience living with their families at some stage, particularly as they transition out of special education programs and face challenges in securing suitable housing.
As Joey matures, Ceonzo expresses that she and her husband are increasingly concerned about his future once they are no longer around. “What kind of life awaits him in our absence?” she questions. She believes that parents should not have to “plead” for essential services, such as housing, for their adult children from the government. “It shouldn't be a battle for parents to secure what they need.”
Actor Colin Farrell is one of the parents actively participating in the advocacy for individuals with disabilities. His 21-year-old son, James, has Angelman syndrome, a rare neurogenetic condition that is frequently mistaken for autism. To support this cause, Farrell has established a foundation that bears his name, focusing on raising awareness for those with intellectual disabilities. In an interview with ABC News, the Oscar-winning actor shared that he is contemplating what the future holds for his son as he transitions into adulthood.
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"There aren't many choices," he remarked. "The entire system is quite chaotic. Many individuals are putting in a tremendous amount of effort, yet they find themselves struggling against a system that fails to provide the support they truly need," he added.
Farrell expressed that a key objective of his foundation is to ensure affordable housing is accessible for individuals with disabilities. Ceonzo shared her excitement about having a prominent ally in the special needs community. “He truly understands the issues,” she remarked about Farrell. “If I were 20 years younger, I would have teamed up with him and made a real impact,” she quipped.
Ceonzo mentions that SNACK* has grown alongside Joey, who is currently 29. Thanks to a mix of membership fees and fundraising efforts, the organization has broadened its services to offer overnight care for individuals like Joey and his close friend, Andy Shaw, who has been a part of SNACK* since he was 8 years old and is now 28.
Margot, Shaw’s mother, recalls how Andy and Joey formed a connection through their mutual affection for ketchup many years ago, making it a staple at their daily lunches. “I honestly can't envision my life without Jackie,” she expressed. “All the efforts she's made to nurture these friendships are invaluable, and I would never want [Andy] to miss out on that.”
These connections also reach the team members at SNACK*, including Program Coordinator Rachel Butkiewicz. “I believe Snack has fostered a sense of community for everyone, not just for the members, but for the staff too,” Butkiewicz remarked. “When I come here, it truly feels like my second home.”
Andrew, the son of Ceonzo, beams with pride over his mother's accomplishments. “What sets her apart as a pioneer is her willingness to embrace risks and confront uncertainty head-on,” he shared. “She walked away from a stable job to establish a nonprofit, despite having no background in working with children with special needs. There were countless moments when she could have given up, yet she persevered.”
Ceonzo reflects on her experiences, stating, “I’ve learned about the strength of individuality. Never allow anyone to convince you that you’re incapable.” When it comes to being a pioneer, she humbly responds, “I’m not sure. I’m simply a mother who sought change, just like many others.”
