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!'"Š" 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.
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!'"Š" 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.
Labels: Cerebral Palsy, communication aid
26 June 2009
Talkative teen finds her voice - and there’s no stopping her!
A TEENAGE disabled girl has finally been able to tell her mum she loves her after being given a voice.
It’s changed her life massively, people won’t realise how much - mum Joanne, above with Jodie, 16, on the machine enabling her daughter to speak for the first time
Jodie Griffiths, 16, suffers from cerebral palsy and has always struggled to express herself.
But now, thanks to a £10,000 communications aid, she can finally tell the world how she feels - and release her wicked sense of humour.
Jodie, who lives in Grasmere Road, Redcar, with her mum, has wasted no time in making the most of the machine. Mum Joanne, 42, said: “One of the first things she said was ‘Mum, I love you.’ It was wonderful. I knew every part of her, just by the way she looked, I’d know how she was feeling. But now she can really communicate. It’s emotional because I didn’t think she would ever be able to say anything like that.”
The communications console, which mum Joanne boasts is better than the one theoretical physicist Stephen Hawking uses, has opened up the world to Jodie.
“It’s changed her life massively, people won’t realise how much,” she said. Simply by using her head to press a switch, she can select a word or phrase, play music or games, watch video, access the internet, and even operate the TV.
Joanne said: “She’s very outgoing, very sociable and has a wicked sense of humour.”
And it’s this cheeky sense of humour that has not only enamoured people to her but on the odd occasion landed her in trouble.
Jodie, who attends Kirkleatham Hall School, said: “I have already been in trouble at school because I kept putting my music on. My friends thought it was funny but my teachers did not.”
Prompted by mum, Jodie also admits that she told a man working at B&Q: “You’re looking very sexy today.”
The money to buy the console came via two different sources.
A panel of young people from the borough awarded Jodie with £7,000 from Redcar and Cleveland Council’s Youth Opportunity Fund.
Joanne said: “They usually don’t give out personalised grants of that amount of money but when the children on the panel heard about Jodie their reaction was, well, if we’ve got a voice then Jodie should have a voice too.”
A fundraising night at Redcar's West Two raised £2,600. Joanne said: “At the beginning, we knew we’d have to raise the money ourselves, then when we got the grant, I just couldn’t believe it.”
Jodie, a Middlesbrough FC season ticket holder, said: “Thanks to the kids on the panel my life has changed so much in such a short time. I can now tell people how I feel and what I want. In fact it’s hard to shut me up.”
It’s changed her life massively, people won’t realise how much - mum Joanne, above with Jodie, 16, on the machine enabling her daughter to speak for the first time
Jodie Griffiths, 16, suffers from cerebral palsy and has always struggled to express herself.
But now, thanks to a £10,000 communications aid, she can finally tell the world how she feels - and release her wicked sense of humour.
Jodie, who lives in Grasmere Road, Redcar, with her mum, has wasted no time in making the most of the machine. Mum Joanne, 42, said: “One of the first things she said was ‘Mum, I love you.’ It was wonderful. I knew every part of her, just by the way she looked, I’d know how she was feeling. But now she can really communicate. It’s emotional because I didn’t think she would ever be able to say anything like that.”
The communications console, which mum Joanne boasts is better than the one theoretical physicist Stephen Hawking uses, has opened up the world to Jodie.
“It’s changed her life massively, people won’t realise how much,” she said. Simply by using her head to press a switch, she can select a word or phrase, play music or games, watch video, access the internet, and even operate the TV.
Joanne said: “She’s very outgoing, very sociable and has a wicked sense of humour.”
And it’s this cheeky sense of humour that has not only enamoured people to her but on the odd occasion landed her in trouble.
Jodie, who attends Kirkleatham Hall School, said: “I have already been in trouble at school because I kept putting my music on. My friends thought it was funny but my teachers did not.”
Prompted by mum, Jodie also admits that she told a man working at B&Q: “You’re looking very sexy today.”
The money to buy the console came via two different sources.
A panel of young people from the borough awarded Jodie with £7,000 from Redcar and Cleveland Council’s Youth Opportunity Fund.
Joanne said: “They usually don’t give out personalised grants of that amount of money but when the children on the panel heard about Jodie their reaction was, well, if we’ve got a voice then Jodie should have a voice too.”
A fundraising night at Redcar's West Two raised £2,600. Joanne said: “At the beginning, we knew we’d have to raise the money ourselves, then when we got the grant, I just couldn’t believe it.”
Jodie, a Middlesbrough FC season ticket holder, said: “Thanks to the kids on the panel my life has changed so much in such a short time. I can now tell people how I feel and what I want. In fact it’s hard to shut me up.”
Labels: Access, Cerebral Palsy, communication aid