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Parents as Advocates for Special Needs Children
Standing up for Your Child with Special Needs
By Kim Byrum Skinner
Sam Robb was born a healthy baby boy – until fate intervened. At 13 months of age, Sam, the only son of Gahanna, Ohio, residents David and Sharon Robb, fell catastrophically ill from post-infectious encephalomyelitis – an unforgiving virus that rendered him a C-7 incomplete quadriplegic.
The disease quieted all movement from the chest down and silenced his tiny hands, too. What it didn't steal was Sam's spirit.
Sandwiched between supportive sisters Sarah, 13, and Cassie, 7, Sam, now 11, has become an accomplished downhill skier and adapted sports standout, not to mention a special-needs advocacy success story.
"I've found fabulous mentors for my son in the Adaptive Adventure Sports Coalition, an Ohio program serving the recreational needs of people of all ages and disabilities," Robb says. "It's a powerful thing for Sam, and for Dave and I as parents, to meet someone in the community who has a similar disability – someone who is doing well and living a productive and quality life. That's the light at the end of the tunnel."
The Adaptive Adventure Sports Coalition (TAASC) is just one of many advocacy programs available to special-needs children across the nation in a variety of areas ranging from education, health and physical fitness to transportation, employment and social and physical accessibility. In fact, such outside-the-box innovation is spreading – good news for children like Sam.
For the athletic-minded Robbs, who ski, swim, travel and cheer themselves hoarse at weekly sporting events, advocacy's a team game. "It requires work at a level that would be considered a tad unique to child-rearing: the ability to communicate and work with many different professionals," Robb says. "Advocacy requires a great deal of openness about your life and what it entails; advocacy requires the ability to share some very intimate details at times. But there is a huge personal reward in advocating successfully for change, in seeing tangible results from your efforts and even paving the path for those still to come."
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