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The Lessons of Advocacy: A Parent’s Journey Advocating for Children with Special Needs

Sep 27, 2017, 10:54 AM

Special needs advocacy develops from a moment of choice. In that moment, you recognize that a child has special needs that are not being adequately addressed by the educational, medical, community, family, or other structures that are intended to support the child. Those that choose to recognize that the child deserves to have his or her needs met, deserves to live a safe and, fulfilled life in which they are allowed  to fully realize his or her potential, have made the first step towards advocacy.

This choice can cause a moment of panic. A person may ask, “what do I know?” or “why should I be the one to speak up?” One may even feel that advocating for that child will put themselves and others at risk. But advocacy is not to be feared. Rather, this doubt and fear should be viewed as an opportunity to confront the challenge and begin the process of gaining the skills and knowledge that it takes to be an effective advocate for children with special needs. It can be a difficult choice for families to speak up for their child, or for school staff to support necessary changes, but the reward outweighs the risks.

Once you express your concerns, request a meeting, or ask for an evaluation for your child, you are an advocate. Hopefully, you are met with a supportive response, but you may be met by an individual who resists change or cannot see a need to revise school special education policies.  The law requires schools to meet minimum expectations, which some may feel is enough. This is the first lesson of advocacy: It is rarely fast and easy. In the majority of cases the system wants to do nothing, or at best continue to simply meet the minimum requirements.

This may leave you discouraged and frustrated, but persistence is key. At some point, a teacher, a parent, administrator, or even another advocate will thank you for speaking up for this child. They may have been afraid to speak up, have felt they did not have the skills, or were just unaware of the need. This is the second lesson of advocacy: you are not alone. There is strength in numbers.

Reenergized, you do not take no for an answer from the system and begin to arm yourself with knowledge and information to bring to the table. You can begin by reaching out to your local PTA or by contacting your state’s Parent Training and Resource Center. You quickly learn that many at this table, including the experts, are missing important knowledge and understanding of the law, special needs, and how to protect and support children with special needs. This is the third lesson of advocacy: you will spend as much or more time educating others as you do directly advocating. You persevere; you keep calling meetings and slow progress is made towards meeting the child’s needs. This is still frustrating, but you can begin to see the difference in the child’s life.

Then it happens, a parent, teacher or someone else comes to you for help. They have recognized your advocacy skills and tell you a story of a child whose needs are not being met. Pretty soon you begin to advocate for many children, not just yours. The school begins to want your help and knowledge, and progress towards meeting the child’s needs happens quickly. It is almost like something magical has happened or you are in another world. Of course, often it can be the same old battles over and over again, but as we learned before, advocacy is not always simple or easy and slow progress is better than no progress.

You come to the realization that you cannot help all children individually, and that only system change can end the need for these individual battles. On to the next level: enforcing the existing laws and working at the state and federal level to improve the laws that protect children with special needs. You find allies and help with drafting, passing, and implementing legislation. You come to fully appreciate the final lesson of advocacy: it is hard work and never ends. But the reward is that you are making a difference in children’s lives, and this work will benefit them for a lifetime.

The above path is a compilation of my journey as a volunteer parent advocate of a child with a disability and that of many other advocates that I work with.  Where do you fall in this story? Do you want to begin or need help with your advocacy?  Remember there is power in numbers and that PTA is first and foremost an advocacy association. Does your local PTA have a special needs or exceptional child committee, or an advocacy or legislation committee? If not, check your region or state PTA.  You may also contact the National PTA Special Needs committee, or check out the Special Education Toolkit on National PTA’s website. Always remember this: you are not alone in your journey to improve the lives children.

Yes, I see everything though an advocate’s lens, and would not change it for anything. I am making a difference in improving the lives of children and there is no better calling for me. If you are thinking of speaking up for a child with special needs, always remember this: you are not alone in your journey to improve the lives children.

Bill Doolittle is the parent of a child with special needs and a member of National PTA’s Special Needs committee. He resides in Delaware.

For More Information:National PTA’s Special Education Toolkit includes a guide to getting started, information for transitioning families of children with special needs from Pre-K through graduation, helpful acronyms and terms, and a breakdown of federal special needs laws.

Join fellow PTA advocates for the PTA 2014 Legislative Conference. This exciting three-day event provides in-depth discussion about PTA’s public policy priorities through interactive workshops, keynote speakers, advocacy trainings and more. Registration for the Legislative Conference will open January 17, 2014. Please visit for more information.