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Scholarships give notice to kids who have siblings with autism

LAND O'LAKES

It was a wistful conversation prompted by a roadside Powerball billboard and his wife's altruistic notion that gave Ernie Black the idea.

Along with the "quit our jobs and travel the world" scenario they agreed to, Becky Black said her imaginary winnings would go to starting a scholarship for kids like their daughter, Sydney.

As a career specialist in the guidance office at Sunlake High, Becky had done the research. She knew there was money out there for students who met specific criteria such as having red hair or being left-handed.

But there were no scholarships for kids who are overshadowed because of their place in their families: kids who have a sibling with autism.

"My wife says a lot of things, and I have to admit sometimes I turn it off," Ernie said with a chuckle.

But this time he was listening.

Unbeknownst to her, he started the 501c3 application for the "Sydney Has a Sister" scholarship foundation the very next day.

• • •

At, 14, Regan Black lives in her own happy world.

First encounters can be deceiving. She welcomes a visitor with a smile and a cheery "Hello!" The next instant she's gone, plugging her earphones in and singing and dancing to the music on her mother's iPhone.

"There's minimal days when she doesn't have a smile on her face," said Ernie, a case manager for the Gibbs and Parnell law firm in Tampa. "Sometimes we say that we wish we could escape to her world."

Regan was diagnosed with autism when she was 2 and has been labeled with Pervasive Developmental Disorder, Not Otherwise Specified.

"It's a catch-all for students who are speech and language delayed," her mother said.

Regan converses in fragmented sentences, Becky said, and typically parrots dialogue from favorite movies or television show like The Muppets and Monsters University.

One day she asked her mother, "Am I adopted? Because sometimes I feel different."

For a moment, it seemed like a breakthrough. "But then I realized it was from The Country Bears movie," Becky said.

Sydney, 15, is Regan's security blanket, best friend and, though they are just a year apart, third parent of sorts. Those are the roles the Sunlake High sophomore took on when she was about 5 years old and her mother sat her down to explain what autism was.

When they were finished, Sydney asked, "Is Regan ever going to be normal?"

"I just sat on the bed and cried," Becky said.

Sydney took the news in stride, showing an uncanny ability to reach her sister when her parents could not.

"I don't remember her complaining or crying or ever saying, 'That's not fair,'" Becky said.

Even when it meant skipping a sleepover to attend Regan's therapy sessions, or leaving a theme park early because Regan didn't want to wait in line, or passing on invitations altogether because Regan can be a "search and destroy" kind of kid at other people's homes.

"We see the sacrifices Sydney had to make," Ernie said. "She's been a mother hen. She's accepted that role."

It's not a big deal to Sydney.

"She's my sister," she replies with a shrug.

Being Regan's sister has made her more compassionate to others with disabilities.

"She's so caring," said Heather Sidlauskas, Sydney's middle school cheer coach. "Nothing gets that child down."

Even so, the older sister admits to losing patience on occasion —like the time she was cheering and some kids in the stands were laughing at Regan because she was playing with paper dolls.

"I don't like it when people make fun of her and look at her weird," she said.

And while she might seem mature for her age, Sydney does have a silly side — especially when it comes to Regan.

"Sometimes they act more like 8- and 9-year-olds instead of teenagers," Ernie said.

"They push each other's buttons," Becky said. "Those are the moments I relish. That's what normal sisters do."

• • •

About six months after that lottery fantasy conversation, the 501c3 application was approved. Ernie gathered his extended family together and sat his wife and daughters down.

He told them, "Our family is starting a scholarship foundation."

Initially Becky was overwhelmed, worried they would fail. She rebounded quickly, working with her husband to create a board of directors and raise funds.

"I was shocked — so surprised," said Sydney, who has taken an active role in explaining the scholarship to potential business donors.

More than 100 volunteers came on board, working in exchange for donations at local mud runs and other events.

"I loved that they have stepped out of the box to benefit kids who are typically in the shadows," said Sydney Has a Sister volunteer coordinator Melanie Riggle. "This is not about their own family, which to me is amazing."

The initial goal was to raise enough money to grant three scholarships in the first year. At a banquet this spring, the family handed out six $1,000 scholarships to high school graduates from Pasco and Hillsborough who have siblings with autism.

In a required essay, scholarship recipient Gabriella Rivera, 17, who is headed to Duke University, wrote about her brother, Rocco, 6.

"It's a little bit different for me than it is for Sydney because there is a bit of an age gap with us," Gabriella said. "But you realize that they are amazing people. They just act a little different than us. You just have to have the patience to get to know them."

Since handing out those scholarships, the Black family is now working on the next round for graduates of the class of 2015. They recently hosted a wine-tasting fundraiser at Jan's Wine and Boos 2 in Lutz. Plans are set for a silent auction at Beef 'O' Brady's in Land O'Lakes and a golf scramble at Northdale Golf Club in Tampa.

They plan to expand the scholarship program by raising more funds for classroom supplies for younger students with autism.

"I'd like to give $10,000 in scholarships next year," Ernie said, adding that the plan is to eventually go statewide. "I think we're on track for that."

Contact Michele Miller at mmiller@tampabay.com or (727) 869-6251. Follow @mimichele525.

>>fast facts

Sydney Has a Sister Scholarship foundation

To donate or for information on the Sydney Has a Sister Scholarship foundation including upcoming fundraiser events and scholarship application criteria, go to sydneyhasasister.com.

Scholarships give notice to kids who have siblings with autism 08/28/14 [Last modified: Thursday, August 28, 2014 12:09pm]

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