More than a diagnosis: Children with autism cause parents to grow, reach out

April 16--SANFORD -- Vickie Belk recalls responding to her son D.J.'s autism diagnosis when he was three years old.

"It was a struggle for us in the beginning," she said. "It was a difficult journey. At first I did a lot of crying and started blaming myself. What did I do wrong?"

Cara Thompson found out her twin boys Leland and Greyson both had autism when they were two.

"Even though we kind of knew (already), it was still hard hearing a professional actually tell us," Thompson said. "I always tell other parents whose kids are newly diagnosed that it's OK to be upset in the beginning, it's OK to mourn the loss of what you thought you had."

Belk and Thompson, both of Sanford, are just two of the many mothers who have had to hear the news their children have been diagnosed with autism. And the stories they tell are more than just the diagnosis, it's what they've learned and what they've done with some pretty tough news.

Living in light of it

The organization Autism Speaks defines autism as "a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences." The reality is autism is not an easily definable condition because those who have it are on a spectrum.

"No two kids with autism would be the same," Belk said. "A lot of times people will ask me things that I did, but I can't really tell them to do the things that I did because their kids are so different from my child, so they just have to try to figure out and learn their own child."

D.J. is classified as "high-functioning," similar to Asperger syndrome. The defining characteristic of high-functioning autism is a delay in the development of speech and language skills before age 3. Leland Thompson is considered moderate, while Greyson has severe autism. He's nonverbal.

"It can get really hard," Cara Thompson said. "Leland is at the point where he wants to do things and go out and then Greyson, he doesn't really respond to verbal cues and things like that. So anytime we leave the house, it's hard. And then Leland wants to play with him, things like that."

When a child is diagnosed with autism, it can be rough on the parents. There are doctor's visits, therapist's visits, lots of hours of research. Vickie Belk recalls eating breakfast, lunch and dinner in her car one day while shuttling D.J. around to appointments.

Both parents had an idea their children had autism before the official diagnosis, but as they said, it didn't make it any easier.

Personally growing

As Cara Thompson says, parents with autistic children, wherever they are on the spectrum simply need to press on.

"You go with the flow," she said. "They're capable of so much. You just have to pull yourself together and do what's best for them."

Since their children don't develop as normally as others, things have to be handled differently. But that doesn't mean there aren't opportunities.

When D.J.'s friends were preparing to graduate high school and go to college, he was struggling to get the required scores on standardized tests. So he didn't get to go. But a couple years later, an option came forward -- the Beyond Academics program at the University of North Carolina in Greensboro.

UNCG started the program to help students with intellectual and development disabilities earn a four-year certificate while emphasizing higher education, self-determination, community inclusion, career development and independent living. Students take core classes and electives and do an internship in their junior year. D.J., who's interested in weather and meteorology, is current participating in an internship with SciWorks in Winston-Salem.

"He has worked very hard," Vickie Belk said. "He has high expectations for himself. He's determined and he never gives up."

Cara has gotten Leland and Greyson involved in autism-specific programs like a surf camp designed for children with the condition and participating in activities at Camp Royall, a camp environment developed by the Autism Society of North Carolina located in Pittsboro. Helping her boys get into those kind of opportunities is what her job is as a parent.

"You've just got to keep trucking through and figuring out what's best for them," Cara said. "I try to expose them to as many opportunities as I can. We just do what we think is best for them and hopefully we make the right decisions."

Reaching out

Both Vickie Belk and Cara Thompson have found ways to help others who have children with autism.

Three years ago, Cara and a friend started what she referred to as a "tattoo-a-thon" called "Tattoed for Autism." They worked with Hot Rod Tattoos in Sanford to develop a fundraiser where participants can pick from designs and colors and get some ink.

This year's event, starting at 10 a.m. Saturday, promises to be the most extravagant yet. Cara is expecting between 400-700 people to come out. There will be 60 different vendors, live music, a DJ, a kids' play area and food trucks. New this year is a show of medieval sword fights put on by The Knightly Order of the Fiat Lux out of Raleigh. After the show, attendees can participate in their own sword fights, albeit with much safer equipment.

"People will be able to pay to fight a knight or fight their friend," Cara said. "It's different, but we're trying it out this year."

The Infidels Motorcycle Club of Sanford will also be doing a ride to raise money. All funds raised with go towards Autism Speaks.

In 2003, when D.J. was 10, Vickie published a book called "How We Overcame Autism." The book includes perspectives from D.J.'s father David, older sister Tusheena and younger brother Ryan. D.J. also penned a few paragraphs.

"I am very happy with life just the way I am," D.J. wrote. "I would not like to be anyone else."

Vickie said some parents can be ashamed of the diagnosis, but she said it's nothing to be ashamed of. She wants people to know that the diagnosis is not the end.

"I want them to know that having autism is nothing to be ashamed of and that a lot of kids with autism can go a long ways," she said. "All of them won't be successful in the same ways, but they all can be successful."

Cara echoes Vickie's perceptions.

"I just felt like there's so many people, they hear the word autism, but they don't necessarily understand what it is or what it's like living with it," she said. "And there's so many people with autism in Sanford alone. I've talked to so many parents who don't know anyone else or have an adult child with autism and they've felt alone and isolated."

The main thing Vickie would like to see is acceptance of children with autism.

"A lot of times, we would like to people to have children that's the same age of a child that has autism, let them interact with them and be their friends," she said, "because a lot of times they're lonely."

Cara's husband Steven was in the Air Force and is now a contractor with them. He's currently overseas deployed, so she's home alone with Greyson and Leland. It seems like a difficult situation, but it's her calling as a parent.

"When people say, 'I don't know how you do it,' you can," she said. "You have no choice. Like any parent, you want what's best for your children. My kids are awesome, they're loving, they're silly."

Reach Staff Writer Zachary Horner at 919-718-1217 and on Twitter at @Zachary_Horner.

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