When your child is diagnosed with a disability, no one gives you a manual showing you haow to best care for your son or daughter. Healthcare organizations and agencies can provide you with materials and lists of resources, such as Web sites, doctor referrals, social services, therapeutic agencies, schools and facilities, that provide services to disabled children. However, much of the information is incomplete and fragmented.
To make things worse, when most parents learn of their child’s disability, they are overwhelmed with emotions ranging from guilt to intense pain. Feelings of real anguish may last for months or years. During this period, many parents have difficulty moving forward and seeking assistance for their child.
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 literature about autism and began to focus on getting Marty the assistance he so desperately needed. Though I didn’t know it at the time, these were my first steps in becoming an advocate for my son.
Parental advocacy is the single most important thing that can improve the quality of life for your child with special needs. Your everyday advocacy can impact every area of your child’s life— from his ability to function and progress in school, to his ability to experience great joy and contentment. Identifying and harnessing the wealth of experts and resources regarding your child’s special needs care will help you in becoming the most effective parent advocate possible.
Over the years, I have helped hundreds of parents apply the same advocacy skills I learned at Harvard Law School and honed in my own practice. Advocacy requires more than merely being in favor of your child’s growth. There are specific skills to grasp. And 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 on the sidelines and hope for the best. You must be a leader. Assume it is your responsibility to get the best information, treatment and services for your child. Then go get it.
Summer offers a perfect time to apply this principle. Lots of educational and recreational programs are available to help your child engage with typical peers and practice newly acquired social and language skills. But, not all programs are created equally. As an advocate, gather pertinent information on the various programs, visit the sites, talk to administrators and other parents, consult with your child’s team and then make the selection that is best for your child.
How will you know what is 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? 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 must be prepared to follow the ongoing developments. At the same time, exercise your best judgment with the knowledge you have about special diets, supplements and medications. Never let any person or organization set the expectations for your child. Only you can monitor your child’s progress and set the developmental expectations.
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 child with special needs. 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.
Advocacy, like parenthood, is a lifelong venture. It requires you to constantly reevaluate your child’s progress, needs and wants and to enlist the assistance of many other family members, friends and professionals, including educators, doctors and attorneys. By cultivating groups of family, friends and professionals, you will be surrounded by empowering circles of people who can assist you with the myriad tasks and responsibilities facing you. In the end, you will have to become a confident team builder who knows how to bring out the best in everyone involved. As your experience grows, you too will be able to educate others.
You don’t have to have a medical, legal or educational degree to become a powerful advocate. As a loving parent who is 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.