Newsday: Long Island mom on holistic quest to help the autistic
Article VIA Newsday:
Dylan Stone’s favorite yoga position is savasana, the polar opposite of the pretzel-like poses most think of.
He lays down, arms by his sides, and lets his body and mind be totally still, usually the final pose of a routine.
But he’s not the only one who finds peace at moments like these. Dylan is 11 and autistic, a condition that can make serenity difficult to achieve.
“That is huge,” his mom, Debbie Stone, said, expressing the fulfillment she gets when she sees her eldest son channeling energy positively.
It’s all the motivation Stone needs to continue channeling her energy into Pop.Earth, the nonprofit she founded in 2012 to use holistic methods to offer support to families with loved ones on the autism spectrum.
The organization’s name comes from the population numbers often seen on maps. Its conception was spawned by the unlikeliest of sources — the Internal Revenue Service.
Dylan was diagnosed as autistic at age 5, but his mom started noticing signs of the disorder when he was 2, like failing to make eye contact and losing the couple of words he had begun to utter.
Stone, who lives on the South Shore with husband Matthew and younger son Brandon, 5, admits she had the common initial “fetal-position reaction” to her son’s diagnosis.
She quickly started to educate herself, though, heading to Yahoo! groups when they were en vogue and spending hours at the library.
“They thought I was studying in medical school,” Stone said of the librarians who took note of the books she would check out.
But one of her biggest keys to finding a battle plan came from her own childhood. Stone said her grandmother was very holistic, and Stone’s mother picked up on the lifestyle.
“My mother always had us do cleanses,” Stone said. “She makes everything from scratch. Growing up, I ate a lot of things other peers of mine didn’t have to eat . . . Candy was a rarity for me. I thank her now for it, but I didn’t thank her then,” she said with a laugh.
The combined education led her to seek different treatments for Dylan that weren’t covered by her medical insurance. As a result, Stone racked up thousands of dollars worth of bills that she filed on her tax returns.
“I was actually audited, because they wanted to know why I spent so much money on health care when I had health insurance,” Stone recalled of that experience in 2008. “I had to explain to them the health insurance would not cover any alternative therapies for autism. And at that point they weren’t covering much for autism.”
Stone said she kept meticulous records, and the issue was eventually resolved. But it made her think about others dealing with autism who lacked similar resources.
Stone became pregnant with Dylan a year after publishing a children’s book, “Penelope Penguin’s Pancake Party,” and she always writes down her creative thoughts. She did just that with Pop.Earth, but it was a few more years before a little nudging from her husband prompted Stone to officially launch the nonprofit.
Almost immediately there were signs the timing was right. Stone had to contact the IRS to set up a 501(c)3. This time around, the person assigned to the case had an autistic nephew.
The organization’s first project is the Om Holistic Center for Autism & Developmental Disorders. The center, which operates at different locations — primarily parents’ homes — while it searches for a permanent site, uses holistic practices like yoga and reiki to promote relaxation and healing.
Seeing the positive effects on Dylan helps crystallize the organization’s purpose for his parents.
“He makes more eye contact,” Matthew Stone said of Dylan. “Waking up in the middle of the night has reduced drastically. He’s more vocal, he answers to questions more. You can give him a task — go hang up your coat, make your bed, take a shower. You can show him how to do it, and he has become more independent.”
The center, available to those of all ages, offers services that also include massage, nutritional support and art and music therapy, at free or reduced cost. Those of lesser means can volunteer their time as payment.
Stone’s plan has been well-received, and she is now focused on finding a permanent home on Long Island for a community center to serve youth and young adults on the autism spectrum and their families. Once she does, her plan is to include events for the siblings of children the community center works with. Stone said the attention special-needs children require can be hard on their brothers and sisters.
“It’s not willfully, you don’t mean for it to happen,” Stone said of not paying enough attention to the other children. ” . . . It would be kind of nice to host some things just for them.”
Pop.Earth’s yoga sessions are held at places like Harmony Yoga and Dance in Wantagh, which hosted a recent class. One of those in attendance was Michael Korins, who was diagnosed with autism at age 3. He uses music to communicate his emotions. In high school, he was an all-state vocalist with the New York State School Music Association, and in 2013, the McCarton Foundation named him a “Genius of Autism” honoree.
Pop.Earth has talked with several local colleges about getting space for the center, which would also allow students in health-related fields to work with autistic young people. And Pop.Earth has ramped up its fundraising efforts. Its initial fundraiser at Chelsea Piers in October raised $20,000. And on May 2, Pop.Earth will hold its inaugural gala at Carltun on the Park in East Meadow’s Eisenhower Park.
Stone relies on a core staff of five to operate Pop.Earth. When she founded the group, Stephen Kiront, whom Stone has worked with for 10 years at the Garden City office of Woodstock Financial Group, Kiront’s wealth management business, agreed to serve as chairman. He has helped bring in sponsors like Capital One, which contributed to the October event and had volunteers at the recent yoga session in Wantagh.
“Fortunately, for me, I’m not experiencing what she is,” Kiront said. “But I’m kind of living it through her . . . Unfortunately, it affects so many people. But fortunately, because it affects so many people, there is ample opportunity to continue the awareness of it and offer up different alternatives.”
Stone is now networking with fellow advocates, like Arielle Lever, founder of CO/LAB, a program that teaches people with developmental disabilities acting skills, and Franklin Becker. The “Top Chef” Season 5 contestant’s eldest son, Sean, 14, is autistic, and Becker organizes the annual “Autism Speaks to Wall Street: A Celebrity Chefs Gala,” to raise funds.
“She’s doing a great job, but a lot of it had to do with the need for such a center,” Becker said. “People will come behind it, and people will help her grow, but it just takes a catalyst to do it. Without people like Debbie, things don’t get done.”
Until the Om Holistic Center finds a permanent home, Stone said the group will continue to do the best it can as “gypsies” and enjoy what’s already been accomplished.
One day at home recently, Stone’s husband gently asked Dylan to “dance with mommy.” But when Dylan indicated he wanted to dance with his dad, and knowing his son needs that reinforcement, Matthew Stone gladly obliged.
“This is our life,” he said. “But we’re happy to have it.”
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For more information on POP.EARTH, call 516-426-2251 or visit popearth.org. The organization is seeking volunteers and says, “No special skills needed . . . just a big, generous heart!” Pop.Earth continually seeks space for both one-time events and for a full-time Om Holistic Center for Autism & Developmental Disorders.
The Long Island office of AUTISM SPEAKS is at 380 Oakwood Rd. in Huntington Station. The national organization was founded in February 2005 by Bob and Suzanne Wright, whose grandchild had the brain disorder. The organization is the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Contact: 631-521-7853; longisland @autismspeaks.org; 631-424-3404 (fax)
Plainview-based ACDSserves nearly 1,000 children and adults with autism, Down syndrome and other developmental disabilities. There is an ongoing need for volunteers to help those enrolled in ACDS’ services and programs. Contact: 516-933-4700; acds.org; firstname.lastname@example.org
For more volunteer information and opportunities, contact Long Island Volunteer Center at 516-564-5482; longislandvolunteercenter.org.