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Dancing with possibilities: Families find mutual support for disabled children
Posted by the Asbury Park Press on 09/21/07
BY LINDA WALLS
CORRESPONDENT

In two and a half years, Shannyn Craig inadvertently taught her parents, Michael and Michele, to talk like neurologists.

The Middletown couple began learning the lingo soon after their youngest daughter was born with agenesis of the corpus callosum and chromosome deletion, and subsequently was diagnosed with cerebral palsy and Dandy Walker syndrome.

The beautiful, brown-eyed blond wiggling in her adapted stroller at the Family Resource Associates PossAbilities Walk in Wall last weekend is also blind, microcephalic and on a feeding tube 22 hours a day.

Still, she created a storm of activity as sisters Meghan, 8; Erin, 6; Katie, 4; and friends pressed crayons onto a colorful banner in her name: "Shannyn's Team Support FRA," which they paraded in the walk.

"The other girls are amazing with her," Michele Craig said of Shannyn's sisters. They attend an FRA siblings group and wrote an article for the organization's siblings newsletter. Her mom participates in a parents group and Shannyn receives physical, occupational and speech therapies. Her dad researches information on the Internet.

"Seventy percent of all the knowledge I have (about neurological conditions) is not from doctors; it's from printout, from the experiences of all those mothers and fathers — especially mothers — on the Internet," he said.

Shannyn also will be included in an upcoming article in the National Journal of Genetics because "no one else is known to have that deletion of the 14th chromosome," Michael Craig said, adding, "nobody has all her symptoms, collectively."

Medical terminology aside, the effect of all Shannyn's conditions is that she can't walk, talk, roll or crawl, and she has been hospitalized 15 times because of choking.

The entire Craig family, plus aunts, participated in the FRA event, which also featured games, dancing, face painting, resource exhibits and demonstrations of adaptive computer equipment from the TECHConnection Computer Lab at the organization's Shrewsbury headquarters.

Nancy Phalanukorn, executive director and one of the FRA founders, said the day is intended to raise funds and awareness. Many people with disabilities and their families are not aware of the developments in assistive software designed to "make life easier for the children and help make them more successful," she said.

The 2007 event is the second PossAbilities Walk held at The Atlantic Club in Wall, which last year raised $35,000 for the computer lab.

John "J.C." Maimone of Ocean Township shot some hoops, sang along with a Billy Joel recording of "Movin' Out" — by himself in front of a large speaker — and later joined in hip-hop dancing with DJ Jay. Maimone has been participating in FRA programs since he was an infant, diagnosed with Down syndrome. Now 22, he takes computer classes at FRA and is an accomplished drummer.

Two-month-old Micah Stein of Tinton Falls danced in his mother, Lauren's, arms to the DJ music as his dad, Keith, shot photos of the two on a digital camera. Micah, who has Down syndrome, is part of the early intervention program. The FRA program, said Lauren, "is a great way for people to get connected, and other parents are great resources."

Ocean Township resident Kathy Farrell said she brought her 6-year-old daughter, who has mild cerebral palsy and uses sign language to communicate, to the FRA walk to support the organization.

"And my daughter is having a wonderful day, because she's with people who accept her," she said.

Linda Walls is a parent and grandparent of people with disabilities, ranging from deafness and Tourette syndrome to cerebral palsy and epilepsy. Write to her at the AsburyPark Press, 3601 Highway 66, Neptune, NJ 07754, or e-mail doable@optonline.net