News

Parents of autistic children welcome 'hope'

Amelia McCartney sings at the First Words of Hope, a fundraiser for St. Gerard House and its Grotto School.

By Bill Moss, Published: April 23, 2012

Caroline Long had taken her 3-year-old son, Liam, to a specialist two weeks after he had been diagnosed with autism.

"I was lost completely" about the dizzying list of theories and research about what caused the disease. "She was asking me about Liam's diet," she said. The child had been fasting before the four-hour appointment that included a battery of blood tests and other analysis.

"I looked over and he was shoveling an entire bag of goldfish in his mouth. He was checked out for the next two hours," Long went on. "She looked at me and said, he needs to be on a gluten-fee diet. And I started thinking, We're going to need a bigger boat."

A bigger boat is what Caroline Long and others built and that bigger boat was what nearly 300 people came to celebrate and support last week at the First Words of Hope fundraiser for the St. Gerard House and its renowned program for autistic children, the Grotto School.

Long's children, Liam and his little sister Bridget, were diagnosed with autism eight years ago, before the St. Gerard House existed. Since then, the program has helped hundreds of families with advice on diet, raising a child with autism and assimilating children into a mainstream classroom.

Still, parents of autism face challenges that other parents don't. One time, when the Long family traveled to Charleston for a professional tennis tournament, Bridget saw her favorite player, Serena Williams. "She just knew that Serena was going to know her, and she kept trying to chase her down, saying 'It's me, Bridget.' She had seen her so many times on television that she thought Serena knew her."

St. Gerard House is a godsend to parents who are confused, heartbroken and just plain worn out from trying to help their children. Its specialists demystify the disease as much as possible, but its causes are still so little understood that the condition is represented with a puzzle piece symbol. In a video about St. Gerard House, one mom speaks gratefully about the help she received from Clinical Director Rachael Rushing.

"Rachael was the only person who ever used the word hope," said the mom, moved to tears. "Nobody ever said you'll be OK. Nobody ever said there's life after autism."

At St. Gerard House they not only say it, they live it. The program has become known for its success, and it has plenty of work to do. Autism spectrum disorder characterized by "stereotypical behaviors that appear to serve no function (e.g., hand flapping, lining of objects, insistence on sameness), and deficits in communications and social skills," the St. Gerard House says in an information sheet. Symptoms are typically apparent before age 3. "Research has shown that both genetic and environmental factors play a role, and most scientists who study ASDs believe that there is no single cause."

Nationally, one child in 88 had been diagnosed with some form of autism in a 2008 study, a 78 percent increase since 2002, according to the Centers for Disease Control. In North Carolina, the prevalence is higher, one in 70 overall and one in 43 boys. (Autism is almost five times more common in boys than in girls.)

Families that have a child with autism face medical expenses five times greater than those without one. Intensive behavioral treatment costs $40,000 to $60,000.

St. Gerard House helps by providing parent and sibling support groups, training for educators and therapists, functional behavior assessments and nutritional counseling. The Grotto School is a 1:1 an early intervention behavioral intervention program for children ages 2½ to 7. Its Applied Behavior Analysis program costs $40,000 per year per child.

St. Gerard House gets most of its funding from donations, about a quarter from tuition and fees, and about a quarter from fundraisers and grants.

Maureen McDonnell, a St. Gerard House board member and registered nurse who has been working with autistic children for 15 years, praised the facility and its leaders during last week's event.

The program "is exactly what parents are asking for," she said. "Here it is, right here in Hendersonville. This program is so comprehensive and so effective I predict teachers and therapists will come from all over the country to learn why they have so successful a program."

At the luncheon last week, Kathryn and Tom McCartney told the story of their daughter Amelia, a Grotto School graduate who they said benefited immensely from the program.

"It was such a relief to have Amelia at a place where everybody understood what it was like to have a child on the spectrum," Kathryn said. Without The Grotto School, Tom said, Carolina Day School "would be a place where she went to pick up her brother."

Amelia stole the show by singing song.

At Carolina Day, the child's teacher has spotted her potential.

"I'm already looking for the perfect musical for when Amelia is in the fifth grade," the teacher said. "She belongs on stage."