When a young child is diagnosed with autism, the amount of therapy and special attention he needs can initially seem overwhelming to his parents. But a new support group in Queens, that’s aiming to empower, educate the caregivers of autistic children, just might be the answer for those who feel that they have nowhere to turn.
Autism, a neurodevelopmental disorder, affects the way information is processed by the brain, and it’s characterized by delays in social interaction and communication. The exact cause of the disorder is still unknown, although it remains an area of active research. Symptoms of autism can appear in a child as young as six months.
Queens County Parents Autism Coalition is an organization that seeks to strengthen families who have loved ones living with autism through support, education and networking. Group meetings, lectures and the occasional trip to the local park are all part of its support method.
The South Ozone Park-based group grew out of one mother’s quest to find local support when her daughter was diagnosed with autism a few years ago.
“[My daughter] Zariah was diagnosed with pervasive developmental disorder on June 13, 2005,” explains Cheryl Ocampo. “Back then, I didn’t know anyone who had it. I started scouring the Internet to learn more information.”
While Zariah’s preschool did offer workshops detailing what parents of autistic children could expect, the Queens-based mom found them lacking.
“I didn’t think it was enough,” says Ocampo. “There needed to be a way to connect with other parents and show them how to cope and adapt.”
So, she decided to take matters into her own hands. Ocampo founded the group on Nov. 1, 2006 as an informal support group through meetup.com. Back then, it was called Queens Autism Meetup Group.
“At first, it was just two or three of us meeting at a coffee shop to talk about our experiences. Within two years, the group had taken on a mind of its own,” explains Ocampo. “In November 2008, we were incorporated as a non-profit [and changed the group’s name]. Today, we partner with the Queens Special Education Parent Center to educate and empower parents of children with special needs. [Of course, our group] offers more of a concentration of support for families dealing with autism.”
The group allows parents the time and space to vent and talk, but also provides information on caring for children with autism.
“We arrange for meetings and workshops where parents can receive training,” explains Ocampo.
One recent workshop involved a board-certified behavioral analyst speaking with the group about what parents and caregivers should do when autistic children have issues with sensory over-stimulation.
“He broke it down for us and introduced ways in which parents can reinforce good behavior,” says Ocampo.
New York Lawyers for the Public Interest have also spoken to members about the legal issues they face. And the group can direct parents to products and services for their children that are free, or for which they could be reimbursed. “There are things that kids with a documented disability are entitled to have,” asserts Ocampo.
Members know how to have fun, too.
“We take our kids on outings — movies, parks and zoos — places where we want our kids to develop social skills,” she explained.
With all of the programs and support the group offers, it’s not difficult to find members who flourished there.
“I can think of one example in particular,” muses Ocampo. “[A mother] came to us two weeks after her son was diagnosed. When she first came to [the group], she just cried. She vented and talked with us. Then, she left for a year to cope and grieve. After that year, she came back with a bang. She started out doing office support for [us] and in January 2011, she will become our treasurer as part of our board of directors. It has been an honor to see the transformation in her, and to see her child progress. She and the other team members [have become] the best advocates for their children.”
The knowledgeable and supportive members give Queens families of autistic children a haven, as well as a place to gather strength. For more information, visit www.qcpac.org.
Mary Carroll Wininger is a writer based in New York City. She is a frequent contributor on topics ranging from etiquette to feng shui.
