One of the greatest challenges facing parents of a child with special needs is learning how to effectively advocate for their child. For some parents these efforts may include involvement in such statewide groups as Parent Advisory Committees (PACs), or other organizations providing important parent-to parent support and resources for families of children with special needs.

Some parents may prefer to forge their own innovative advocacy efforts, citing time constraints, a lack of energy, or a distaste for the political agendas that may be part of organized groups. More than one parent has shared with me their disillusionment over the lack of measurable impact some groups have on the lives of children with special needs. As one parent said, “While group members jockey for position and power at monthly meetings, my child’s needs, and mine, go unmet.” Other parents cite engaging stories of the personal empowerment they’ve gained from being involved in a dynamic group situation where the focus is on a common mission.

In the more than a decade that I’ve parented a child with cerebral palsy, one thing regarding advocacy issues has become clear. The road one ultimately chooses to take isn’t nearly as important as why one chooses to take it. If being part of an organized parent or politically motivated group appeals to you, then seek them out. But before committing valuable time and energy to any group, ask tough questions. Whom does this group serve and why? How does the group view the role of parents in their children’s lives? How can this group help me to better serve my child? In what ways does the group work to resolve conflicts within my school district? Ask for specific examples of how the group has best served parents and children in the past. When you’ve exhausted this questioning, ask yourself the toughest question of all: Does this group really serve the best interests of parents and children?

Through my work as a journalist and public speaker, I’ve chosen to use my time and talents to personally advocate for individuals with special needs. My primary goal is to get vital information directly into the hands of parents, while encouraging them to see their child as a child first, not as a disability. Through my written and spoken words, I try to encourage parents to create brighter futures by embracing individual advocacy efforts, an important role that comes with having a child with a disability. While I lend my time and name to a few groups, including board membership with UCP Michigan, it’s only after asking myself how my involvement will best serve my son and others with special needs.

There are times when the group effort is invaluable, like when the law is clearly being violated or important disability legislation is pending or parent-to-parent group support is desired. Still, experience has taught me that by empowering parents to be the best advocates they can be, we may ultimately create more effective child advocates. No one group can resolve all the daily challenges that come with parenting a child with special needs, and families expecting more will be sorely disappointed.

I’d like parents and professionals to recognize the actions of all individuals, including those within groups that foster individual empowerment. Individual actions worthy of recognition may be as grand as accepting an invitation to serve on a national committee on disabilities, or as quietly powerful as helping a child with a disability learn how to read or use technology effectively. It may include writing a letter to a business to request they improve accessibility, or helping individuals with special needs find affordable housing. It may mean taking time to watch a fireball sunset with your child or catching elusive fireflies on a sultry summer evening. Any effort that directly helps individuals with special needs improve their quality of life today, is the real definition of advocacy. Groups have an invaluable opportunity to help support such empowerment of the individual.

It takes time, energy, and steely resolve to raise a child with special needs well. We should applaud the unsung efforts of everyday people making important differences in the daily lives of children, while working to ensure that groups professing to advocate on behalf of families do just that. If an organization’s mission includes representing me as the parent of a child with special needs, I expect them to do it well.

Most parents of children with special needs can recall a time when the most they could do for their child was to get out of bed and put one foot in front of the other. On these most challenging of days, perhaps that is enough.