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Nonverbal Teen Gets The Gift Of Communication For Christmas

12/24/2013 01:06 pm 13:06:54 | Updated Feb 23, 2014
The Bakersfield Californian

It's hard to imagine that Raymond Lara has never spoken to his family. The 15-year-old high school student has never been able to form his thoughts into words or share his dreams for the future.

And although his mother, Susan Lara, can see the world in his eyes, Raymond has never been able to say the words she longs to hear: "Mom, I love you."

Cerebral palsy, mitochondrial disease and other complex medical conditions have left Raymond unable to speak, unable to eat anything by mouth, even to swallow his saliva. He's a teenager trapped in a body that doesn't hear his commands.

"There are times when something is wrong, and he tries to get our attention," said Lara. "We know he needs something. What we've always done is try to guess."

But now there's hope for more than just guessing.

On Monday evening, as a small crowd of friends and well-wishers gathered at the American Legion Hall on H Street, a man sporting a red suit and a fluffy white beard delivered a Christmas gift to Raymond that could change everything, a gift his parents hope will open an avenue of communication between them -- and between Raymond and the larger world -- that he's never experienced before.

Thanks to the Make-A-Wish Foundation of Central California, which grants the wishes of children who have life-threatening medical conditions, a speech-generating device featuring hands-free eye-gaze technology was presented to Raymond at the surprise gathering.

The device uses imaging technology that records a digital portrait of the user's eye, then calculates the location of the user's gaze on the computer screen. By holding one's gaze on an icon or menu choice, the user can interact with the computer and generate words and sentences.

"It evaluates where the eye is looking," said Duane Law, CEO of Kern Regional Center, which assists thousands of developmentally disabled residents in Kern and other counties.

But because Raymond also suffers from nystagmus, a condition of involuntary eye movement, it's taken months of work with assistive technology teacher David Mensch and many others, including therapists at Centennial High School's special education program, for him to gain enough control to use the eye-gaze system.

"It's an extraordinarily liberating thing," Law said of the still-developing technology. "Raymond's family not only believes he can communicate, but that he communicates every day."

After months of rigorous therapy using the system, they discovered Raymond was learning to use it, communicating that he needed to use the bathroom. Such a seemingly everyday occurrence was a monumental accomplishment. But the family couldn't afford the $6,000 cost.

The process of denial and multiple appeals with their insurance company took more than a year -- yet ultimately went nowhere.

That's when Make-A-Wish came to the rescue.

"We call it the power of a wish," said Catherine Anspach, a spokeswoman for Make-A-Wish Central California.

Experience has shown the wish itself can be an instrument of progress and healing in children suffering from cancer and other illnesses, she said.

"We grant wishes to give children hope, strength and joy," she said.

As Raymond unwrapped his gift with help from his family, his eyes lit up as he realized he was getting an eye-gaze system that would be mounted on his wheelchair.

Raymond's system will begin with just a few menu choices. He can't read, so icons or pictures will be used for simple messages, such as hunger or thirst or the need to use the restroom.

"The system will grow with Raymond," Mensch said. "The more he learns, the more it will grow with him."

But he's still a teenager, and his personality is already reflected in his menu choices.

"He's kind of a little flirt," his mom said, laughing. "He has one that says, 'Hey, pretty lady.'"

Raymond's dad, Roman Lara III, said there's so much inside Raymond trying to get out.

"Raymond has a lot of love to share with the world," he said. "Who knows, we may have another Stephen Hawking here."

And while he also wants to hear Raymond express his love for his mother, elder brother and him, the sports fan has another hope as well.

"I can't wait for him to say, "Go Broncos!" ___

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