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."

Recreational Advocacy
Based at Ohio State University's Dodd Hall, nonprofit TAASC is recognized among the country's premier sports-based rehabilitation programs, utilizing more than 100 volunteers to help youngsters work through their challenges.

Roughly 100 special needs individuals participate on a regular basis each year, learning to snow ski, play sled hockey and even kayak. The ski program alone provides 15 certified, adapted ski instructors and up to 40 volunteers. Behind the scenes, the organization works its miracles with just two full-time staff members, both paid by a federal grant.

"The disabilities we see here range from amputees to wheelchair users to various developmental learning levels," says program director Susan Dieter, a Canfield, Ohio, native and adaptive physical education specialist. "My personal motto is that people can do anything, as long as you capitalize on their strengths and are open to adaptation."

What fuels her commitment? "I could be in a wheelchair tomorrow," she says.

Recreational advocacy picks up where physical therapy leaves off, helping special needs participants strengthen mental and physical dexterity by developing muscles and self-esteem. "I could tell you story upon story of parents coming back and saying their child is doing better in school," she says. "Their attitudes are different. One little boy's parents wanted to take him skiing. After a month and a half of skiing on a weekly basis, his demeanor, self-esteem and balance were all improved. He was looking forward to something."

Emotional Advocacy
"One characteristic we do see in folks who are successful advocates is that they have an ability to see, in the midst of challenges and obstacles, a positive result," says Rick Rieser, Buckeye Ranch president and CEO.

Buckeye Ranch, a comprehensive source of psychological and emotional care for Ohio children and families, assists more than 1,500 boys and girls daily via residential and foster care services at eight locations statewide. The organization also provides community and education-based programs, child welfare services and outpatient counseling.

"The advice I'd give to a parent faced with a special needs challenge is to look for the good that can come out of a terrible situation," says Rieser. "It's also important to make sure you're not trying to do it alone. Seek professional support. Find out what resources are out there. In recent years, we're finding people have spent hours and hours and hours on the Internet, seeing what's available locally, even nationally. The good advocates who come to us do their homework. They don't just take what we say at face value. They really question things because they're educated."

Robb cautions, however, that not all parents make the best advocates. "Sometimes the parent is too subjective or passionate to be reasonable or, depending on the time period, still grieving,” she says. “I've been there myself. Successful advocates have learned the art of compromise. They are comfortable with themselves, have the ability to apply common sense, can make demands and do so in democratic fashion. They stand firm when they have to, yet have learned to 'pick and choose' their battles."

While not everyone is equally suited to lobby lawmakers, raise money or organize rallies, Dieter believes advocacy can be practiced by anyone and begins with daily acts of courage. "It can be as simple as taking notice of someone who's pulled into a handicapped parking spot who isn't handicapped," she says. "If you leave a note on their car or say something to them, you're being an advocate."

Educational Advocacy
For many parents, advocacy starts in the classroom. Because the term "special needs" encompasses such a broad definition – everything from medical or mental limitations to severe behavioral disability – Individualized Education Programs (IEPs) help tailor programs to personal needs.

"Children who have identified special needs are required to have IEPs," Rieser says. "Sometimes, there's a question of whether a child needs an IEP, and that's where parents become advocates. That advocacy broadens the resources the child will receive. I've also seen teachers step in as advocates on behalf of a child, so even the word 'advocate' is quite broad."

Robb believes parental participation is imperative. "Communication is a must," she says. "The parent is usually the expert on the child and how the disability has specifically affected his or her child. The educator is the expert in the grade-level curriculum he or she is teaching and knows a great deal about how to present it to most students. The two must come together and find a way to ensure that the educational material is not compromised when the presentation or the demands on the student are changed because of the disability. No small feat."

"The parent has to be prepared to give as much information as possible about his or her child to the educational team and to monitor the implementation of the agreed-upon IEP," Robb says. "The process is never done. That's just the way it is. The educational team needs to respect the knowledge of the parent and be willing to be flexible – maybe even do things in a way they never have before."

Social Advocacy
From lobbying for user-friendly buildings and transportation to assisting special needs teens on a job search, accessibility advocates provide key emotional and logistical support along a difficult road.

Social and physical accessibility are critical to healthy emotional development, experts say, and often present the biggest challenge.

"Sam is very capable in a manual wheelchair, and we have found most of the community accessible, which makes his participation, in some way, shape or form, possible in most things," Robb says. "But the hardest thing for a child like Sam is creating social experiences similar to that of his peers. The invites are fewer and, of course, that's the way it is. Folks worry about their house not being accessible and 'How could we possibly invite him to a birthday party when we're going to the pool?' My answer currently is to have his friends come to our house. This doesn't take the place of social invites, however, which is something all children yearn for."

Medical Advocacy
Dwindling state and national budgets make the already daunting work of advocacy even more difficult, program officials say. And the timing of the current economic downturn couldn't be worse. According to the President's Commission on Mental Health, for example, 20 percent of all young people have some sort of mental health issue.

"It's literally a crisis of kids who have needs at a time when the question is, 'How are we going to pay for those needs?'" Rieser says. "There's just not a sufficient amount of money. We do what we can. We spend every dime that we get wisely to serve as many kids as we can, hoping to bridge the gap."

Even without adequate public funding, Dieter's seen gradual progress, which she attributes to heightened volunteerism and group advocacy.

Robb agrees. "Advocacy as a whole educates the community at large," she says. "Paving paths for Samuel has created a mutual respect between the individuals or leaders in the fields I am working in and myself. When folks see my willingness to go the extra mile, speak for my son, step out of my comfort zone or work to create change, even those who might not agree with it seem to admire it. When you work closely with a teacher, educating them on the needs of a child like Samuel or any child with unique needs, you are, in effect, creating a new advocate."

Small Steps, Big Progress
Once an infant who couldn't move, sit, roll over or lift his head, Sam Robb now negotiates life from a wheelchair he maneuvers himself. With orthotics, he can stand and walk with crutches. Advocacy makes it possible.

"All of these things took many years of work in physical and occupational therapy, and he isn't done," Robb says. "Sam can ski, participates in adapted sports and has made many friends. His perseverance is remarkable, and we are, as parents, very proud of his work and accomplishments."

Want to see more?

• Speaking Up: A Voice for Every Child
• Here's an IDEA: Earlier Help for Special Needs Children
• Learning to Learn Differently: Helping Your LD Child Excel
• Talk about it!