Mom starts summer camp for kids with fetal alcohol syndrome

By Kate Thayer

Chicago Tribune

TINLEY PARK, Ill. — Campers take turns scaling a climbing wall nestled among the trees. In between climbs, they listen to music, laugh and dance the Nae Nae.

They seem like typical adolescents, and in many ways they are. But most of them said it was the first time they’d been in a group of people who understand them. For some, it was the first time they’ve met other people who also have some form of fetal alcohol spectrum disorder.

For a week this summer at a campground in Chicago’s far northwest suburbs, 12 youths from six states attended a first-time camp established specifically for those with FASD, a spectrum that includes fetal alcohol syndrome and other disabilities stemming from exposure to alcohol before birth.

Sharon Tassone started the camp with her son, Nick, 21, as a way to provide a resource to families dealing with FASD. The Tassones know firsthand the challenges of FASD because Sharon’s younger son, Alexander, 17, has the disorder.

“I know what we went through, and the pain the children go through,” she said. “It was hell, and it was hell for my son too.”

Soon after she and her husband adopted Alex from Russia when he was 2, Tassone said she noticed “something was off.” Alex had sensory issues and outbursts, did not engage in imaginative play and had no concept of risk.

His parents sought out specialists who, after several other diagnoses, eventually determined that Alex had a form of FASD.

When a pregnant woman drinks alcohol, it passes through the placenta to the fetus, said Dr. David Garry, a professor in obstetrics and gynecology at New York’s Stony Brook University and an expert in pregnancy and alcohol for the American Congress of Obstetricians and Gynecologists. But unlike the mother, the unborn baby doesn’t yet have the enzymes needed to “clear” alcohol from the system, he said.

Effects of FASD can include facial deformities and abnormalities in the heart and other organs, as well as varying degrees of brain damage, which can lead to developmental and behavioral problems that can be minor, severe or in between, Garry said.

And while FASD isn’t as well-known as other disorders, studies suggest that 2 to 5 percent of the school-age population carry some effect from fetal alcohol exposure.

Symptoms can overlap with other conditions, and some children affected by FASD don’t display any of its typical physical characteristics, Donaldson said.

For all those reasons, the disorder can be difficult to diagnose, and there are fewer resources available for families dealing with it, experts say.

Sharon Tassone said her mission is to raise awareness as well as provide resources to families.

And while there are camps tailored to kids with special needs, the Tassones know of no other camp for children with FASD.

“Someone has to do it,” she said.

The idea of the camp was not merely to provide an outlet for the children but a break for parents who, Tassone said, “need respite.”

She and her older son Nick talked for years about starting a camp for kids like Alex, but getting it off the ground took effort.

Tassone went back to work full time to raise funds for the camp and invested $20,000 into the project.

Nick, a DePaul University student, began taking classes in nonprofit management and community service to prepare for his role as camp director,.

Slowly, things came together. Last year, the Tassones formed a nonprofit organization called Camp: A FASD Community, established a board of directors and rented space at Camp Duncan.

They hired a nurse to administer medication. A pediatrician and a therapist who have worked with Alex and others with FASD also signed on to help.

The counselors — mostly Nick Tassone’s friends — attended special training to learn about FASD.

The Tassones didn’t do much marketing, but they started a website and a Facebook page, and medical professionals on the nonprofit’s board began to spread the word.

Soon, Sharon started getting emails from other FASD parents. And on June 26, the camp opened, with the participants, ages 10 to 17, coming from as far away as California and Texas.

Like Alex, all the campers were adopted, and they all fall somewhere on the fetal alcohol disorder spectrum.

Much of the week was filled with typical camp activities such as swimming, kayaking, archery, and arts and crafts.

“It’s changed my life,” said Joey Holubka, a 17-year-old camper from Naperville. There are “people here that actually know about this disorder. If I could go to school here, I would.”