Wednesday, October 13, 2010

NJ family takes pride in independent living of siblings with Fragile X

From The Courier Post in N.J.:

MEDFORD, N.J. — Daniel Maloney (pictured) just got a promotion, his third in 11 years.

He's an assistant cook at Medford Leas, where he serves up daily dishes such as marinated flank steak and butternut squash bisque for more than 200 residents at the retirement community.

Maloney has Fragile X Syndrome, the most-common inherited cause of intellectual impairment. He shares an apartment with his older sister, Jessica (pictured), who also has Fragile X.

Their younger sister, Kate, is the only Maloney sibling who did not inherit the syndrome. But Fragile X and other developmental disabilities are part of the fiber of her daily life as a special education teacher at Cherokee High School in Marlton.

"I think I'm in a unique position to know just how well people with disabilities can function with the proper support," she says.

"My brother and sister are working. They maintain a home. They are the most reliable people I know."

Fragile X is less apparent in females, often causing mild learning disabilities. The syndrome is more pronounced in males, who are more likely to have intellectual impairment and autistic behaviors, such as failure to make eye contact.

The Maloneys approach Fragile X as a family. Kate is area director for the Special Olympics, where Dan plays flag football. Kate (pictured) and her husband, Todd Allen, are trustees at Pride Ventures Inc., a not-for-profit organization that provides vocational training for people with developmental disabilities. Jessica is a volunteer at Pride Paws, the group's pet supply store in Medford.

"Mom and Dad, Kate and Todd, Dan and me," Jessica says. "I'd say we are quite a team."

Jessica, 36, graduated from Lenape High School's resource center program, in which the curriculum is tailored to the specific needs and abilities of individual students with intellectual impairments.

She didn't receive any specific vocational training. But her work ethic and outgoing personality landed her jobs at a number of supermarkets, including IGA, Super G and Stop N Shop. She currently works part time at ShopRite on Route 70 in Medford.

"Jess pounded the pavement to find a job, just like anybody else," says Kate, 28.

Like many workers, Jessica has been laid off from a job in recent years. When a grocer she was working for closed, she went to trade school to learn Microsoft Office applications.

But she was unable to find a position where she could put her new skills to use. Jessica started working as a part-time checker at ShopRite but recently switched to bagging 24 hours a week.

"I am not good at math and I thought it would be less stressful for me," she explains.

Jessica took a slight pay cut, from $10.30 an hour to $9.50. The biggest loss was her health benefits.

"My mom and dad are paying for my insurance now," she says. "I'm trying to move into a job at ShopRite with a little bit more responsibility so I can get it back."

Her parents, Hop and Diana Maloney of Mount Laurel, have learned to achieve a balance, offering support while encouraging Jessica to be independent, attaining such milestones as learning to drive and taking a vacation to Florida with friends.

Because his disability is more pronounced, Dan attended Burlington County Special Services School in Westampton, where he was named Student of the Year in 1999.

He thrived at the school, working in the cafeteria and learning food service skills. He graduated at 21, the age at which students with developmental disabilities are no longer eligible for public school in New Jersey.

"A part of me didn't want to leave," he recalls.

Nine of 10 people with developmental disabilities don't find jobs after they leave school, according to the advocacy group Arc.

Dan went to work five days a week in the kitchen at Medford Leas, finding dignity in presenting perfectly sliced peaches. In 11 years, he has never taken a sick day.

"My favorite things are college basketball and cooking," says the 32-year-old. "If they need anyone to fill in at work, I volunteer."

Jennifer Zdunczyk, director of dining services, says Dan keeps his cool in a fast-paced kitchen. She describes him as a focused worker with good time management skills.

"Dan is friendly and engaging and gets along well with his co-workers and the residents. There is not one person he passes without saying "Hello.' "
His most recent promotion, from senior line server to assistant cook, earned Dan a raise from $10.75 an hour to $11.70. The job also provides health benefits.

Between them, Dan and Jessica are able to afford their apartment in a low-income complex, which is close enough for Dan to walk to work.

"Kate is five minutes away and Mom and Dad are 12 minutes," Jessica says.
"I know they are a phone call away if I need help."