Event: Chicago

Kids Play, Parents Learn at Spina Bifida Association of Illinois Play Dates

Children with spina bifida and their families face challenges every day.

The Spina Bifida Association of Illinois (SBAIL) is giving kids with spina bifida and their siblings a place to have fun, while giving moms and dads a place to learn, share ideas and meet parents facing many of the same daily challenges.

SBAIL's Play Dates - the next one on April 21 -- are designed for children with spina bifida 7 years and younger, and for their siblings.

Says SBAIL Executive Director Amy Maggio, "Essentially the program provides opportunities for the child to interact. A lot of the activities are based on making good decisions, decision-making, organizational skills, visual and motor integration."

In the past, Maggio says, that's translated into diverse activities, including climbing walls, face-painting, singing and dancing.

In addition to the sheer fun quotient, the Play Dates give kids with spina bifida the chance to interact with children who have special needs and their able-bodied sisters and brothers.

"Maybe for the first time, they see children who look similar to them," Maggio notes. "Either they're wearing AFOs (ankle-foot orthoses) or braces or are in wheelchairs, but it might be the first time that they see somebody who looks a little bit like them."

While the kids are having fun, their parents can attend educational workshops.

"We did a great program (in February) on bowel and bladder management," Maggio says. "It talked about some of the issues that affect young kids with special needs. In this population, most children are incontinent and will pretty much remain so for the course of their lives."

The April 21 Play Date features a program called "Early Cognitive Development & Learning Strategies," presented by Rachel Wasserman, MA.

"We know," Maggio explains, "that there are real impacts on learning and cognitive development and executive functioning in this population."

The May 6 Play Date, meanwhile, is called Swim & Gym. Maggio says, "We're going to be working with a great organization called the Great Lakes Adaptive Sports Organization. We're going to have a swim clinic for kids with special needs, and a gym clinic."

The May event, which will also invite older kids with spina bifida to participate, will give budding athletes the chance to try different sports, including adaptive golf and bowling.

The Importance of Coffee & Cookies

While Play Dates are designed to provide a fun-filled afternoon for little ones and expert instruction for their parents, Maggio says the chance for parents to meet each other and chat over refreshments may be the most compelling part of the program.

"The program is designed for parents to meet other parents so they don't feel they're alone," Maggio says. "They can network and share information: what works, what doesn't work."

Because children with spina bifida - particularly the more severe forms, such as the myelomeningocele type - spend so much of their early years in hospitals, their families are typically consumed with taking care of basic medical needs early on.

"A baby born with spina bifida with hydrocephalic implications, which unfortunately is about 85 percent of all children born with myelomeningocele spina bifida, has upwards of 30 operations within the first two years of life," Maggio says.

Parents of a toddler with spina bifida often have had little or no time to network with other families who have children with special needs. SBAIL's Play Dates seek to put those families in contact with each other so they can share everyday advice and lend each other support.

A Powerful & Promising Future

At Play Dates, parents can talk to each other and to experts about topics such as when to teach children to self catheterize and what resources school systems can provide.

Parents who have young children with spina bifida can also learn about developmental milestones and what to expect for their kids in the future.

"Fortunately now, we're able to look forward and see what kinds of issues are occurring with our older teens and young adult population," Maggio says. "Prior to the 1980s, most children with spina bifida died upon childbirth. But now that's not the case at all. Kids can live a good quality of life, there's no question about it. But they have a lot of chronic issues to deal with."

Thanks to Play Dates, families living with spina bifida don't have to deal with those issues by themselves. The events are designed to be highly inclusive by, among other things, inviting able-bodied siblings, and providing simultaneous translation of activities into Spanish for Spanish-speaking attendees.

Future Play Dates are scheduled for April 21, May 6, July 21, Oct. 27 and Dec. 8, 2012. For more information, call (773) 444-0305, or visit sbail.org.

"A child with spina bifida has a lot of different needs," Maggio says, "but to the extent that they can learn as early as possible how they can grow and manage them, the better off they'll be."

About the Author

Laurie Watanabe is the editor of Mobility Management. She can be reached at lwatanabe@1105media.com.