One of the greatest challenges facing parents with children of special needs is learning how to advocate effectively for special education in schools and in the larger community.

For some special parents, advocacy may include involvement in organizations like parent advisory committees (PAC), Citizen Alliance to Uphold Special Education (CAUSE), the Arc Michigan, United Cerebral Palsy Michigan, Project P.E.R.F.O.R.M. or other groups that offer parent-to-parent support and family resources.

Some parents cite engaging stories of the personal empowerment they’ve gained in dynamic groups that focus on kids' learning disabilities. Other parents may prefer to forge their own innovative advocacy efforts. They may lack time or energy for other groups or may dislike the political agendas that may be part of organized groups.

More than one parent has shared with me disillusionment with the lack of real 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.” 

Choose Advocacy Groups Carefully

During the past decade of parenting a child with cerebral palsy, one thing has become clear to me: The road one chooses to take isn’t nearly as important as why one chooses to take it. If being part of organized parent or politically motivated groups appeals to you, then seek such groups out.

But before committing valuable time and energy to any group, ask some tough questions: 

  • Whom does this group serve and why? 
  • How does the group view the role of parents in their children’s education? 
  • How can this group help me to better serve my child? 
  • In what ways does the group work to resolve conflicts within my local school district?

Ask for specific examples of how a group has served parents and children in the past. Then ask yourself the toughest question of all: Does this group really serve the best interests of parents and children? 

Focus Your Energy

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 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 (I serve on the board of United Cerebral Palsy Michigan) I do so only after asking myself how my involvement will best serve my son and others with special needs.

There are times when a group effort is invaluable, like when the law is being violated, important disability legislation is pending, or parent-to-parent support is desired.

Still, experience has taught me that by empowering each parent to be the best advocate he or she can be, we create better support for children. No one group can resolve all the daily challenges that come with parenting a child with special needs. Families expecting more may be disappointed.

Celebrate the Power of One

I’d like parents and professionals to recognize the actions of all individuals, including those within groups that promote individual empowerment. Individual actions may be as grand as accepting an invitation to serve on the Michigan Commission on Disability Concerns or as quietly powerful as helping a child with a disability learn how to read or use technology effectively.

Advocacy may involve writing a letter to a business to request improved 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 individual empowerment. 

Celebrate Small Success

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.

At the same time, we must work to ensure that groups professing to advocate on behalf of families do just that. If an organization’s mission includes representing me as a 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.


 

Judy Winter is the mother of two school-aged children. She is the Michigan Council for Exceptional Children’s Parent of the Year for 2002. This article was first published in Newsline, November 2000.