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For a parent of special-needs children, fear is part of the daily routine

The topic is fear, and Nila Benito is a reluctant expert.

Fear of today. Fear of tomorrow. Of meals not eaten, and dangers not seen. Of lives not lived to their fullest, and of all of the complications in between.

Mostly, fear of the anguish seen this week in another mother's eyes.

When she first heard that a little girl with Down syndrome had gone missing at a nearby middle school, Benito's mouth turned dry and her heart went into overdrive. Each passing hour turned exponentially more frightening and painful.

"When she was found at the bottom of that pond, it was devastating," Benito said from the living room of her Lutz home Wednesday. "I was devastated for that poor mother and her family, and also for all of those fears of my own sons' vulnerability."

This is the nightmare Benito has endured for 20 years. She is the mother of two adult sons, each with unique desires, skills and loves. And each afflicted with autism.

Neither Vincent nor Joseph Benito will ever be self-sufficient. Joseph is an artist and a whiz on the computer, and Vincent is a part-time student at a community college who is starting his own vending machine business.

That their lives have some sense of normalcy is a tribute to their parents' persistence, but they have no illusion of realties faced daily.

Even at ages 21 and 22, the brothers need 24-hour supervision. That means cameras in the house, and bolt locks on the doors. That means personal care assistants when they're away from home, and being vigilant with some of life's most mundane routines. That means a simple trip to the restroom can sometimes turn into a tragicomedy.

"I'm not one of those parents who say, 'Oh, I'm so blessed. I have these special children, and God chose me.' I just can't say that," Benito said. "That's fine for the parents who do. I'm glad that they feel that way, and I'm sure they're right.

"But I think this is just something that happened. And it's not okay. Autism is not okay. Disability is not okay. And the reason why is because I see my sons suffer sometimes, and they're vulnerable, and that's heartbreaking for anyone you love."

That vulnerability is not unique to special-needs children, but it is more acute. More expansive. More relentless.

Jennifer Caballero's death this week was only the latest reminder in Tampa Bay. A 15-year-old with autism recently drowned at a pool party with more than 100 people around him. Two other autistic children drowned in separate accidents in April and June.

For Benito, who is an analyst for USF's Center for Excellence on Developmental Disabilities, each tragedy is a reminder of the vigilance necessary for special-needs children. But these tragedies should not be misconstrued as an excuse to segregate.

Vincent and Joseph attended public schools in Pasco County from kindergarten through high school graduation. Their education was specialized, and they required adult supervision at all times, but they also had the opportunity to take part in experiences that might otherwise have been lost forever in more institutionalized settings.

There were times Nila Benito had to fight for her sons. Times, she said, when others considered her a pain in the rear or worse.

The key, she said, was finding solutions that worked to everyone's benefit. Arranging for other students to get class credit for acting as mentors for special needs children. Or meeting with teachers in advance so lessons can be explained ahead of time.

"I believe in the dignity of risk. If you can say you tried something and really did your best to make it work, there is dignity in that. I don't want there to be any regrets when it comes to that," Benito said. "It was never easy for a lot of different reasons. But now I can say inclusion worked. Everything we tried to do had never been done before, and so I'm proud that they left behind a legacy of change.

"At the same time, there's no dignity in risking health or safety. So there always has to be a responsible adult within arm's length. There always has to be a plan."

Even now, Benito is planning ahead. She is 51 and her husband is 57. At some point, they will no longer be around. That means developing a plan that offers her sons the constant supervision they need, but also the freedom they have earned and enjoyed.

She is in the process of setting up a special-needs trust, and figuring out how it will be administered.

"The whole shadow over everything is my mortality," she said. "My mortality is in front of my face constantly. I think about it every night, every day, all of the time."

It is, in the end, the defining characteristic in the life of a special-needs parent.

A fear so great that never ends.

For a parent of special-needs children, fear is part of the daily routine 10/24/12 [Last modified: Wednesday, October 24, 2012 10:42pm]
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