Linking Arms

A Leadership Guide for Parents of Children with Disabilities

Navigating the world of disability services and programs is very frustrating and overwhelming. Regardless of your career status or educational background, when you learn that your child has a disability, you begin a journey that takes you into a life filled with strong emotions and difficult choices that affect the entire family. Another part of that journey is the interaction with many different professionals and specialists and the continuous need for information, supports, and services. I began the journey of emotions and navigating the world of disability supports and services in 2001 when my son Cory was born. He wasnt expected to live to one day. I was told not to get my hopes up and that his brain hadnt fully developed. Life as I knew it was over. I felt like my life came to an abrupt halt. My priorities and focus shifted. I was now a mother, advocate, advanced researcher, and full-time prayer warrior. I had to abandon my old way of thinking and depend on others for information and support as I learned to care for this special little boy. My son is now eleven years old, and I continue to navigate the world of disability to make sure Cory has the proper supports and services put in place and that he is included in his school and community. I have learned a whole new set of skills in order to be a good mother and effective advocate for Cory. I joined parents support groups to link with other families who could relate to my struggles, concerns, and frustrations. It was in those support groups that I learned about other resources and agencies that could help me better understand my sons disabilities. I became part of a community of parent leaders who advocated not only for the rights of their children but for the rights of all children who lived with a disability. Parents of children with disabilities need to be encouraged to develop their potentials as leaders. They generally have the most consistent, knowledgeable ability on their childs development. Training parents to be leaders allows them to build their confidence and the skills needed to advocate and work with the many professionals who provide the healthcare and educational services for their children to have successful outcomes and a good quality of life. I wrote this book to encourage parents, advocates, and caregivers who take care of children with disabilities to educate them on the importance of leadership development and empower them in their journey. Developing parent leadership is a continuous process. I believe it takes parents training parents and forming a support network to give them the opportunity for personal growth, reflection, and knowledge to gain skills to function in leadership roles that effect change for children with disabilities. It is so important for the parent voice to be heard. This book provides parents with the basic knowledge on developing leadership skills and gives them an understanding of diverse learning styles and leadership competencies. I am the parent of a child who is medically fragile. I know the feeling of being overwhelmed and alone. So I encourage all of you who are reading this book to get connected. Get involved with a parents support group, and register for trainings to help develop advocacy and leadership skills necessary to navigate the disability system. Its not enough to just read about leadership; it takes getting involved and putting theory into practice.