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Living life to the full around the world

Read about how people around the world live with Disability. Here you will read about our highs and lows in life,

28 December 2009

Wish Book: Giving Brandon a voice

By Melinda Sacks


for the Mercury News

Unlike his peers, though, he can't say most of what is on his mind. When he tries, what comes out are moans and grunts, unintelligible to all but close family members and caregivers.

The tall, handsome young man loves gospel music, cell phones, Taco Bell and knit polo shirts that show off his broad shoulders. But the inability to speak is a frustrating fact of life for Hills and his mom, Evelyn Glasper. Having a conversation is a lot of work — still, they both try.

"He'll go and get my purse and it is his way of saying, 'Let's go out!'"Å " says Glasper, a single mother who is on disability for chronic back pain and depression. "People underestimate how much he understands and how much he can communicate. It's just that sometimes I am the only one who can understand him. And it is really frustrating for him."

Born with cerebral palsy, Hills struggles with the most basic tasks. An in-home caregiver must be with him at all times, helping with everything from getting dressed to taking a shower. He can walk, but has problems with balance, so a helping hand often is necessary.

The cozy living room of the family home in East Palo Alto is a virtual photo gallery of Hills and other family members, many of whom live in Evelyn Glasper's home state, Louisiana. Over the mantel is a framed painting of a man stepping off a cliff, into the air above what might be an ocean.

"That image is about blind faith," Evelyn says. "Knowing God is there."

Going to church is one of Hills' favorite outings, she says. He loves to get dressed up and is so fond of it that they go to their own church on Saturdays and with friends to another church on Sundays.

"We've been friends since he was very small," says Jennifer Jackson, Hills' daily caregiver, a neighbor and friend who is often at the house.

Brandon's affection for her is obvious as he gives her a kiss on the cheek and sits by her side as she talks.

"Brandon's 24 and his mom is over 60, so it is important we get a means for him to communicate with other people," Jackson says. "It is every mother's fear that they will leave their children. The more we get Brandon ready to be independent in the world, the more secure his mom would feel. We want to be sure he has the ability to live a good quality of life."

What would make life easier for Hills and his mother is a speech-generating electronic communication device that would allow him to point to scenes and symbols that represent what he wants to say. Donations in increments of $50 will go toward its $3,285 purchase price.

A sturdy tricycle customized for Hills' special needs ($1,369) would help him have more mobility. And gift cards ($25 each) for clothes or music would be much appreciated.

Hills doesn't sit around feeling sorry for himself. He approaches each day with enthusiasm and a grin.

When it is time to leave for his "school" — an adult care center in Menlo Park where he goes weekdays — he's is all smiles, grabbing his navy backpack and heading to the car.

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