Linking Arms: A Leadership Guide for Parents of Children with Disabilities

By Pamela R. McDaniel, PhD

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.

• Language: English
• Publisher: Xlibris US
• Release date: Apr 21, 2014
• ISBN: 9781483697390

Pamela R. McDaniel, PhD

Dr. Pamela R. McDaniel is the Director of Family Outreach & Support for the Council on Developmental Disabilities. She trains parents, caregivers, and professionals in leadership and advocacy, offering guidance in navigating the disabilities system. She also serves as one of the agency’s legislative agents, and is a member of the National Council on Family Relations. Dr. McDaniel lives in Louisville, Kentucky with her husband, and two sons, one who is severely medically fragile.

Book preview

LINKING ARMS

A Leadership Guide for Parents of Children with Disabilities

Volume 1

Pamela R. McDaniel, PhD

Copyright © 2014 by Pamela R. McDaniel, PhD.

Library of Congress Control Number:   2013916407

ISBN:   Hardcover     978-1-4836-9738-3

             Softcover       978-1-4836-9737-6

             eBook            978-1-4836-9739-0

All rights reserved. No part of this book may be reproduced or transmitted

in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system,

without permission in writing from the copyright owner.

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Rev. date: 03/02/2016

Xlibris

1-888-795-4274

www.Xlibris.com

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CONTENTS

Introduction Developing Parent Leaders

PART 1 Educated

Chapter 1 Outreach: Linking Parents to Resources

Chapter 2 Involvement: Working with Schools, Communities, and Governments

Chapter 3 Understanding Diverse Learning Styles: Who Am I? How Do I Learn?

Chapter 4 Leadership Education and Development: Building Skills to Be an Effective Leader

PART 2 Engaged

Chapter 5 Beyond Involvement: Parent Leaders at Work

Chapter 6 Advocacy: Speaking Out, Making an Impact

Chapter 7 Understanding Communication Styles: Be Assertive, Not Aggressive

Chapter 8 Listening: The Difference between Hearing and Listening

PART 3 Effective

Chapter 9 Understanding Group Dynamics: Life Stages of a Team

Chapter 10 Collaborations Matter: Understanding Your Role as a Partner

Chapter 11 The Need to Reflect: Understanding Social/Emotional Stability

Chapter 12 Empowered to Create Change: Getting to the Heart of Leadership

Bibliography

Notes

To God be the glory!

You have a perfect plan for my life.

~

To Cory,

A gift from God,

I am honored to be your mother.

INTRODUCTION

Developing Parent Leaders

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 wasn’t expected to live to see one day. I was told not to get my hopes up and that his brain hadn’t 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 fourteen 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 parent 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 son’s disability and effectively coordinate continuity of care. 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 potential as leaders. They need to be empowered to raise their voice to help other parents get involved in their child’s education and healthcare needs. Generally, a parent has basic knowledge of their child’s development, but they need to increase their knowledge and advocacy skills in order to be effective in getting the proper supports and services for their child.

In this revised edition of Linking Arms, I have retained what readers have identified as the main strengths of the previous edition. The book continues to be informative, providing practical skills in leadership and advocacy.

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. I also believe that professionals who read this book will learn firsthand from a parent the importance of positive collaboration.

Because of the immediate task facing parents is to learn advocacy skills and effectively communicate with the professionals that interact with their children, I have relied heavily on real life examples that relate directly to parents’ leadership needs and experiences. Therefore, I have included reflections at the end of each chapter.

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 affect change for children with disabilities. It is so important for the parent voice to be heard.

This book provides parents with the basic knowledge for 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