GUEST BLOG POST: Your Role as Advocate by Areva D. Martin, Esq.
When your child is diagnosed with a disability, no one gives you a manual that shows you how to best care for them. Healthcare organizations and agencies can provide you with materials and lists of resources, such as websites, doctor referrals, social services, therapeutic agencies, schools and facilities that provide services to disabled children. But a lot of the information is incomplete and fragmented.
To make things worse, when most parents learn of their child’s disability, they are overwhelmed emotions ranging from guilt to intense pain. Feelings of real anguish may last for months or years.
After my son, Marty, was diagnosed with autism, I vividly remember feeling lost, empty and sad. Some days I was better able to mask my feelings, but on others, I simply could not muster the energy or the motivation to do much of anything. Although it is difficult for me to remember the exact moment when things began to change, slowly they did.
Once I was able to acknowledge my feelings, I immersed myself in the literature about autism and began to focus on getting Marty the assistance he so desperately needed. I didn’t know it at the time, but these were my first steps in becoming an advocate for my son.
Parent advocacy is the single most important thing that can improve the quality of life for your special needs child. Your everyday advocacy you can make a difference in every area of your child’s life —from his ability to function, to make progress in school and to experience greater joy and contentment. You can identify and harness the wealth of experts and resources available and become an advocate for your child.
Over the years, I have helped hundreds of parents apply the same advocacy skills I learned in law school at Harvard and have honed over the years in my own practice. Advocacy requires more than merely be in favor of your child’s growth. There are specific skills to learn. And then you must have the courage to use them on your child’s behalf.
The first Principle of Advocacy is to Take Responsibility. With your child’s well-being at stake, you can’t sit in the sidelines and hope for the best. You are compelled to be a leader. Assume it is your responsibility to get the best information , treatment and services for your child. Then go get it.
How will you know what’s best if you always have to rely on someone else to tell you what your child needs? What will you do when the experts disagree (as they will)? The only solution to this problem is for you to become an expert. I had to do it too. So did all the parents I have trained. That’s why the second Principle of Advocacy is to Learn as much as you can– about your child’s disability, his symptoms and his behaviors. Although there has been a tremendous amount of information regarding autism in the media, there still is no reliable evidence of its cause or a cure. As a parent, you have to be prepared to follow the ongoing developments, while at the same time exercising your best judgment with the knowledge you have about special diets, supplements or medications.
With a thorough understanding of the Principles of Advocacy, you can develop the skills and savvy you need to take charge, despite the challenges of having a special needs child. You can actively create a far more satisfying life for yourself and your family. You will learn to be discerning and think critically, to speak with authority and carefully document your child’s progress and treatments. These principles are carefully laid out in my book, The Everyday Advocate: How to Stand Up for Your Child with Autism and Other Special Needs, so that you can put them to work in your own life.
You don’t have to have a medical, legal or educational degree to become a powerful advocate. As a loving parent, devoted to helping your child, you already have the heart for this task. Now you only need to learn the skills to fulfill this important role for the sake of your child.
Areva Martin, Esq. has appeared on Dr. Phil, Good Morning America, and FOX News, and has counseled hundreds of parents of autistic children. A graduate of University of Chicago and Harvard Law School, she is the founding and managing partner of Martin & Martin, LLP. Additionally, Martin is the president and co-founder of Special Needs Network, Inc. (SNN), a non-profit launched specifically to support families with special needs children.
April is National Autism Awareness month. Areva Martin, Esq. shares her hard-won knowledge as a parent of an autistic child—and an individual rights attorney—in THE EVERYDAY ADVOCATE: Standing Up For Your Autistic Child (NAL Paperback; $15.00), just out in paperback. To purchase, visit http://www.amazon.com/Everyday-Advocate-Standing-Autism-Special/dp/0451232291/ref=sr_1_fkmr2_1?ie=UTF8&qid=1302531441&sr=1-1-fkmr2.