With a few closing thoughts, I say goodbye to FriendsofQuinn

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by Marcie Lipsitt
Friday, April 10, 2009

Today I say goodbye to FriendsofQuinn and the Health Central Network.  I say goodbye with both thanks and sadness.  I will miss the growing community on FriendsofQuinn but need to continue my writing, advocacy and activism as I have for more than thirty-five years on blogs, listservs, and newspapers and in the local, state and federal legislative arenas.  

So I leave all who read my last blog with the following sentiments.

Children don't ask to be born.  Children born disadvantaged by anything would not have chosen that challenge or burden.  Parents of children with special needs will ride a learning curve that can and will often, go far beyond the knowledge or skills set required of parents with healthy children.

As I have read many questions on FriendsofQuinn I am reminded that none of us has time or learning to waste and that includes on behalf of children.  The moment you suspect "something, anything" is wrong or different about your child and his/her developmental or physical growth; it is not one moment to soon to contact a special needs or developmental pediatrician.  

President Franklin Delano Roosevelt once said, "There is nothing to fear but fear itself."  

Personally speaking, FDR's words have been one of my mottos since I first suspected my son Andrew had serious challenges and medical concerns during his first months of life.  Not knowing has always been more frightening and even today there remain unanswered questions.  Still, I have spent twenty years as "Waldo" on an endless and tireless search for the best of doctors, therapists, teachers and always, answers, answers, answers and more questions. 

So for twenty years, I have learned about and then advocated on behalf of my son, but it is so much more than that.  As a parent who advocates for a child, it is imperative to also become an activist.  So often I am referred to as a wonderful advocate...I hope so.  Still, I know that I am equally an activist.

Multiple dictionaries define the word "advocate" as;

• A person who speaks in support of something.
• A person who supports someone to make their voice heard, or ideally to speak up for themselves.
• One that supports or promotes the interests of another.

Clearly, I have spent more than thirty-five years advocating for my sister, my son and countless children and adults with disabilities.  So what is an activist?

An "activist" is;

• One who is politically active in the role of a citizen; especially, one who campaigns for change.
• One who is conspicuously more active in carrying out any occupational or professional functions
• A doctrine or practice that emphasizes direct vigorous action especially in support or opposition to one side of a controversial issue.

I will admit with a chuckle that much of my activism has made me both famous and infamous.  When my very first guest column went to print I said that those in opposition or the direct targets of my activism could use my picture as a dartboard or for target practice!