Mother, volunteer aims to conquer autism through communication and connections

OCALA - The annual Autism Walk is scheduled this morning at Jervey Gantt Park.

Close to 100 parents, educators and children are expected to participate in the one-mile walk to help raise awareness about autism. Also scheduled to attend is one woman, a single mother of two boys with severe autism, who's on a mission.

"I want to teach [my sons] to live on their own," said 50-year-old Sylvia Miller. "I don't touch the autism. I don't care about it. I'm teaching them how to live with it. I'm teaching them how to live independently, and to understand why others do what they do."

Miller's mission has reached beyond the boundaries of her modest home in Ocala and the colorful Autism Awareness magnet ribbon in the back of her car.

Her mission has taken her from a less-than-stellar marriage, homelessness and poverty, to a home she shares with her 16-year-old daughter, Naddie, and her sons, 14-year-old Kibby and 12-year-old Shukiy.

"I was born to be Cinderella," she says.

Except that her life is a Cinderella story in reverse. There's no Prince Charming; there's no palace and no glass slippers.

Instead, she's a single mother of three, managing everything on her own, with little support from her own family.

"My mother thought I'd never amount to anything, and look at me now," she said proudly. "I have a home. I have a car .Ê.Ê. I don't want anything and I get taken care of. All I have to do is do what I do and I love it."

Miller came to Marion County from Queens, N.Y., seven years ago when her former husband suddenly had visions that they needed to move to Florida.

The family of five lived in a motel room for a week until Interfaith Emergency Services helped them find a place to live.

Within a few months, Miller formed the Parents Helping Parents support group at Maplewood Elementary School, to connect parents of children with autism and other disabilities. She began working and helping at the Center for Autism and Related Disorder, or CARD, a few hours a week.

She attended the advocacy training provided by the Florida Developmental Disabilities Council and turned her support group into a nonprofit organization, Parents Helping Parents of Florida.

Meanwhile, she worked various jobs and tried to get her husband to get a job, to no avail.

The couple finally separated four years ago, when Miller asked her husband to leave. "He said nothing. He got up, packed his bags and left the day before Naddie turned 13," Miller said.

She eventually got full custody of her children, with no visitation, and finalized her divorce last year.

Despite all the ups and down, Miller kept her focus on raising her children. She got involved with CARD and learned how to make her home visually friendly for her sons.

She used CARD's resources and mounted visual clues - small laminated drawings - at every corner of the house to tell the boys what to do when, where and how.

She created "social stories," which she reads to the boys before going to the doctor or to grocery shopping, so they'll be prepared.

"My boys can do anything," she said. "I'm not changing who they are. They're really pure. You have more difficulty controlling a typical teen. But with these guys they're a clean slate."

So when one neatly laid all his favorite things and colorful beads on his new bed and decided to sleep on the floor, Miller got him a sleeping bag.

She waited patiently for four years to take one of them off a diet that included waffles and noodles only.

"Some parents grieve the perfect kid," Miller said. But Miller doesn't, because she knows what it's like to lose a child. Her first-born, from her first marriage, was found strangled at the side of the road 10 years ago.

"My children are part of God's army. My kids are functioning. My kids are thriving," she said.

Miller works full-time for CARD from her home office. One of the walls is covered with certificates of achievement and other certifications she's earned along the way.

Her sons' desks sit at the side of her office, decorated exactly as they are at their school, New Horizon Academy.

She's better known here as the "CARD lady" in Marion County.

"Sylvia has been a real guiding light for us to move Billy to independence," said Barbara Leonard, grandmother of Billy, who has autism. Leonard is active in autism-related activities in the county and said she's known Miller for a while.

Miller has her hands in almost all autism-related activities in the county. "I join anything you can to network and make connections," she said. She planned the autism-awareness activities this month, which is the national autism awareness month.

And she's working on starting a summer camp program, where 30 children with autism and other disabilities are placed in three regular summer camps. She's gotten a grant to hire a certified teacher and six certified paraprofessionals, and she's working to gather volunteers from the University of Florida, so that every child will be accompanied by an adult.

"It's just for one week, so we can collect data," Miller said. "The ultimate goal for kids is to go to every camp in Marion County," and socialize with other children.

With close to 400 students with autism spectrum disorders attending Marion County Schools, advocates like Miller see it necessary to have the children integrated with society, because they will one day grow up and get a job.

There's no doubt in Miller's mind that her sons will one day be able to live independently at the house they all live in now and earn a living.

Her goal is to be able to see them live on their own within 10 years, when Kibby and Shukiy are out of school. "My freedom is my driving force," she said with a laugh.

In the meantime, Miller has been focusing on her sons' strengths, so one day they can get a job. "I see Kibby as a mechanic and Shukiy can work at anybody's kitchen. He loves to cook," she said.

"Don't think they'll never amount to anything. There's always a job somewhere they can do. Invest in them. They're people. They're whatever you make them out to be. Just like my other kid," Miller said, referring to her 16 year-old daughter, who's a junior at West Port High School.

Miller, who gets calls from a handful of parents in need of help each week, gives tours of her house. Her house is a model home for a family who has a child with autism, and yet it looks nothing out of the ordinary.

"When parents come to me crying and I can send them out with hope, a mission and purpose ... If I can do that every day, it makes my day," she said.

It's a mission from God, she says.

"We're just not here to live. You have to take what you've got and do something with it and make a difference in others' lives. It can't just be about me with all the people on this planet."