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Nassau nonprofit Pop.Earth turns to tech to help autistic children in emergencies

Debbie Stone, center, joins her son Dylan, 12,

Debbie Stone, center, joins her son Dylan, 12, who has limited-language autism, Spectrum Designs president and co-founder Patrick Bardsley and the Pop.Earth staff at Spectrum's Port Washington workshop. Photo Credit: Daniel Brennan

When Avonte Oquendo, an autistic teen from Queens, walked out of his school and went missing in October 2013, the story resonated deeply with many parents who fear having their autistic child wander off.

For Debbie Stone, founder and creative director of Pop.Earth (popearth.org), whose son, Dylan, 12, is a limited-language autistic child, the story moved her to act.

"You see stories like this all the time, where kids go missing, and you think about it," said Stone, a Nassau resident who founded Pop.Earth in 2012, a Garden City-based nonprofit that helps people and families who have loved ones on the autism spectrum and other special needs live fulfilled lives.

"I had an idea," she said.

She wanted to find a way to make it easier for emergency personnel to locate and identify a child. (The remains of Avonte, 14, were found on a Queens beach last January.) She turned to Erin Wilson, 45, co-founder of the nonprofit If I Need Help, in Santa Clarita, California. Wilson's organization uses QR code technology — a machine-readable bar code often seen on products, magazines and book spines and in retail stores, that has information connected to it — to help reunite those who become lost or disoriented with their families and caregivers. If I Need Help has about 1,100 members, with a majority being the autistic and their caregivers.

Clients, who get a free membership, create a profile and can buy a variety of QR code products, including patches, ID cards, dog tags, pins and clips that hold personal contact information that helps authorities and others to reunite them with loved ones or caregivers. These items get registered to the member. If that person gets lost, his or her code can be scanned with the smartphone of the person who finds them, whether it's a police officer, emergency-response official or Good Samaritan. If a smartphone isn't available, the code's number can be entered manually on the IfIneedhelp.org website.

DATA DELIVERED

The QR code or the manually input number points to the individual's profile, with his or her information and picture. Profiles can be updated to reflect the current situation.

"The profile can also include behavioral tips on how to best calm a child down, or how to interact with him," said Wilson, who has an autistic son, Jay, 12. "Some people also include allergy or other information that is very important. You can also update all information and pictures in real time."

If needed, the profile can be read when accessed or forwarded to emergency personnel quickly via email to aid in a search.

Now, Pop.Earth has started to sell shirts with a QR code. The shirts are available at the Pop.Earth website's store, the Pop.Shop.

The QR code patch gets sewn onto a shirt, most often on the sleeve, by Stone's mother, Nandranie Pollard, 61, of Uniondale.

The product hits home for Dodie Daniels, who recently replaced Stone as Pop.Earth's executive director. Her son, Cooper, 12, and daughter, Katie, 11, are both autistic. Four years ago, Katie wandered into the woods near a town pool in Centereach. A 45-minute search ensued. She was found, unharmed, playing nearby.

"But we all know that fear," said Daniels, who lives in Suffolk and added she wasn't with Katie when it happened.

In addition to the behavioral tips that can be included in the code, Wilson said.

The Pop.Earth shirts are manufactured by another nonprofit, Port Washington-based Spectrum Designs Foundation, which specializes in apparel customization and was created in 2011. The company employs non-autistic workers and also provides gainful employment and productive work opportunities for people with autism.

"There is a tremendous void for teens and young people to find housing and productive lifestyle activities," said Nicole Sugrue, 41, of Long Beach, a co- founder of Spectrum Designs. "We look at ourselves as a business with a social mission."

The Centers for Disease Control and Prevention in 2014 estimated that one in 68 children has been identified with autism spectrum disorder.

Stella Spanakos, 57, of Manhasset, also a co-founder of the organization, said Spectrum has changed her son Nicholas' life. The 22-year-old spends a few hours a day working in Port Washington.

"Now he has a quality of life, because it gives him a real sense of purpose," she said, adding that 27 people within the autism spectrum are in the program.

The shirts are a brilliant idea, said Eileen Hoberg, 49, of East Rockaway, secretary to the police officer who runs the Special Needs Unit at the Nassau County Police Activity League.

"This will be so helpful for the police, because it takes the guesswork out," Hoberg said. "A lot of the kids can't speak. They're nonverbal. You know they're missing, but it's so hard to get the information. To have all the information right there would be amazing."

OTHER SERVICES

For Pop.Earth, the coded shirts are the latest in a rapid expansion of services such as increasingly popular yoga classes that include aromatherapy and Reiki, a spiritual practice dedicated to the positive transferring of energy.

Stone and Daniels have a long list of 2015 goals, including expanding the yoga classes into Manhattan. Pop.Earth, which already branched out to Colorado in July, is eyeing a foothold in Texas as well. Further expansion is possible.

Setting up classes through Pop.Earth includes finding a location, and asking each participant to donate $5 to the organization.

"If you can't afford the $5, you can still attend for free," Stone said.

Stone said Pop.Earth is also placing a bigger focus on food allergies and digestive issues, because autistic people are more apt to have them.

She has found moral and professional support for Pop.Earth's efforts from Franklin Becker, a celebrity chef who owns the Manhattan gluten-free restaurants The Little Beet and The Little Beet Table. Becker is a longtime autism awareness advocate. His son Sean, 15, is autistic and allergic to gluten and dairy.

Becker is opening a Roosevelt Field Little Beet location this month.

A nutritional workshop for kids with special needs was recently held at The Little Beet in partnership with Cooking Planit, an online platform (cookingplanit.com) that helps families create healthy and customizable meals. Before the event, Becker and Cooking Planit chef Emily Wilson customized recipes from Becker's new cookbook, "Good Fat Cooking" (Rodale, $29.99), that are now live on the website.

Pop.Earth wants to offer more parent counseling and sibling meet-ups, along with the yoga classes, under one roof. For that to happen, the organization must find a permanent home.

"As a parent, it would be great to be able to go to one place," Stone said. "If we can raise the money, we could be in a place by spring. If we are able to raise $250,000, we should be able to do all of this."

That includes Pop.Earth's new E.Q.U.A.L. project, which Stone is spearheading. E.Q.U.A.L., which stands for Educate, Question, Unite, Advocate and Lead, will push for insurance companies to cover more services for autistic children. "That's something they need to do," Stone said, adding that "some insurers are slowly coming around."

E.Q.U.A.L. will also offer low-cost or free legal advice to parents who can't afford it with the support of Bonnie Schinagle, a Garden City-based attorney.

"If you don't have money to pay for help, you're at someone else's mercy," Stone said. "That shouldn't be the case and we want to change that."

FOR MORE INFORMATION

Pop.Earth — Population Earth; we are one

377 Oak St., Rm. 402, Garden City, NY 11530; info@popearth.org; popearth.org

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