Photography by Susan M. Sipprelle
Videography by Maureen Googoo

By Maureen Googoo and Susan M. Sipprelle

Joey Ceonzo, now 12, suffered from hundreds of seizures every day until he was 7 years old.  Although Joey had been diagnosed with autism when he was 2 years old, he could not receive treatment for the disorder until medication began to control his epilepsy.

"I was so grateful when the seizures stopped," said Jackie Ceonzo, 42. "He'd had so many drugs since he was 14 months old. He was nonverbal and not potty trained." She enrolled Joey in a school for children with developmental disabilities, including autism, and promised her son that they were going to have a good time.

But Ceonzo confronted an impasse she didn’t expect.  She couldn’t find an after-school program in New York City that

would accommodate her son’s special needs. 

Dismayed that there was no program for her son, Ceonzo decided to take on the financial and emotional risks of starting one.  She founded the Special Needs Activity Center for Kids, or SNACK, to help Joey and other children with developmental disabilities have fun.  

“There is such a lack of recreational programs for children with autism,” said Rima Ritholz, principal of Public School 176X that serves children who have a diagnosis of autism. 

“The worst thing for an autistic child is idle or unstructured time,” said Jesse Mojica, director of education policy and youth services for the Bronx borough president and father of Adam, who is on the autism spectrum.  “A lot of parents end up keeping their autistic child at home because they can’t find a program that adapts to the needs of their child.”

(Click here to read a transcript of the interview with Jesse Mojica.)

SNACK, which began with an enrollment of six children four years ago, has grown to provide art, music, drama, movement, swimming and soccer classes for about 100 children every week.  No children are turned away, even if they have toileting issues or dietary restrictions.

Autism has been diagnosed in almost all of the 100 children who participate in SNACK.  Children with autism have limited or no verbal abilities, few social skills, and, often, behavioral issues or overly focused interests. 

Children affected by the disorder often have trouble entertaining themselves, which places heavy demands on their parents.  SNACK uses a high child-to-staff ratio to keep the children engaged in its activities.  The program gives parents respite. 

SNACK also offers a lecture series for parents on special needs topics.  Parents are welcomed into a community that shares similar concerns and challenges as they raise their children with disabilities.

Ceonzo, who was afraid that her program might fail in the beginning, has seen SNACK buoy many autistic children and their families.  “I can’t quit now,” she said.  “I don’t want to let any of these people down.”

Helping Joey, as well as other special needs children and their families, has changed the trajectory of Ceonzo’s life.  Ceonzo, a former executive in the textile industry, now devotes herself solely to her family and SNACK.  She and her husband have spent a total of $250,000 – a combination of their savings, loans from family members and equity mortgage borrowing – to start and build SNACK over the past four years.  They do not expect to recoup their expenditures, and Ceonzo does not receive a salary.

The financial risk that SNACK means for the Ceonzo family is coupled with an ongoing emotional exposure.  She has learned to share her personal experiences to help other parents.  “I have to talk about Joey a lot, and that’s not always what I want to talk about,” Ceonzo said.

“What I love is that SNACK provides a fun place for kids to make friends – and often these are children with significant communication and social delays – but also offers a place where parents and caregivers can connect with other people who have children with similar needs and a place for them to get support,” Dr. Amy Davies Lackey wrote in an e-mail.  Lackey, the Manhattan division director of the Hawthorne Country Day School for children with developmental disabilities, works with SNACK as a behavioral consultant and parent educator. 

Now Ceonzo wants to expand SNACK to more locations in Manhattan and other metropolitan areas.  “Too many kids with issues have no place to go, and it’s too isolating for their families,” she said. 

The need for services has grown as the disorder of autism has become increasingly prevalent in the United States. (Click here for graph) A recent study from the Centers for Disease Control and Prevention estimates that one out of every 150 children is affected by the disorder, a rate considerably higher than previous estimates. 

SNACK recently received nonprofit tax status, which Ceonzo hopes will allow her to raise money to open new sites.  She has fulfilled her promise to her son and now wants to help more children.

"Joey loves it here,” Ceonzo said about SNACK.  “His receptive language has improved, and SNACK has contributed because it’s not a contrived environment.”  She is also pleased because now sometimes Joey plays with his brother Andrew, 7, who is not autistic.  “They’ll kick a ball around because Joey has some skills he learned here,” she said.  “When I see that, I think, I can live with this whole situation.”