You Are "Just" The Parent

You are sitting in your pediatrician's office. The parent of a child with a developmental disability. Your mission is to convince your pediatrician it is his or her obligation to warn you that a 50 year double blind study has never been done on the therapy in question. In addition, it does not use any pharmaceuticals which everyone knows is always the best therapy. If you try to counter their objections with any kind of knowledge that you have gained in your research, you will quickly get the message either implied or direct, that "You Are Just The Parent:

Perhaps you have been invited by your child's school to discuss an educational plan for your child. For some strange reason, you believe that your knowledge and opinions will be an integral part of the educational plan. At the meeting, you offer your ideas and quickly are told, "You Are Just The Parent".

Wasn't it society that told us that "parents know their children the best" and "a mother's instinct should be heeded"? These words are often just words. At best, it makes us feel patronized and at worse, angry, sad and frustrated. As a parent of two children with developmental disabilities, I have experienced these feelings more than I care to mention.

How do we deal with these five words? Do we allow these words to become a self-fulfilling prophecy where self-[pity and futility prevail? Maybe we will choose to be reactive and allow anger, uncooperativeness and aggression to dictate our actions. Often the best choice is a proactive response. This choice emphasizes a positive outlook, perseverance, acquisition of knowledge, network building in the community, and effective communications. All of these elements working together allow us to further our ability to advocate successfully for our children.

In addition, parents must work to form an effective partnership with professionals (i.e. medical doctors, educational personnel) based on trust, mutual respect and positive communication. Those parents who are prepared and confident will demonstrate to professionals that they are intelligent and can make rational decisions. Many professionals are willing to set aside their personal agenda in an effort to provide families with the means, knowledge and opportunity to succeed. If a professional does not want to work with you, find another one that will form a partnership.

Being an advocate for your son or daughter is not an easy job. It takes the patience of Job and the fortitude of Hercules. The positive results from your advocacy is an investment in your child which will reap untold rewards in the future.

Ed Note: Lisa has been a GRADDA member for more than two years. You can sense her passion for the issue of playing a proactive role in the management of her child's difficulties. This is truly a formula for success as parents have the prime responsibility of putting the pieces together and forming the partnerships necessary to manage the many aspects of a developmental disability. It's a story I'm very glad she chose to share with us.