Monday, April 21, 2014

A Definition of Determined

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I've been struggling lately with trying to understand why some people are so willing to help, while others will do anything to avoid such a thing.  You'd think I'd have this all figured with a Major in Sociology.   Deep down I think I already know the answers, but don't want to believe it.  I just want to deny knowing that many do not have the desire to be conducive to being part of the solution or have zero intentions of truly wanting to help you or your child with special needs.  Not everyone wants to be helpful... unless well there's something in it for them.    My head doesn't want to embrace the realization that the self-interest norm trumps simply doing the right thing by others.

It goes without saying that well-known motivations behind helping others is usually a  personal connection, which triggers empathy.  That's why special needs parents typically have a soft-spot for each other and tend to come to each others aid even though they're all in the same boat and sharing the same struggles.   Diffusion of responsibility or as some may refer to it as the bystander effect, is one of the most frustrating, not to mention time consuming aspects of special needs parenting. 

We stumble upon this on a regular basis.   It comes in several forms.  One example is fundraising when you have a child with special needs.  People have what is referred to as futility thinking.  I am just one person so how is my tiny contribution of five dollars really going to make a difference in the long-run.  We fail to remember as human beings that it often only takes one person to make a difference in the life of another.    A few months ago, we attempted a t-shirt fundraiser for Noah.  The kind where you have to have to reach so many pledges to even see a penny from your efforts.  The goal was 50 shirts or no pledged orders would be fulfilled and no monies to Noah would be given.  We had four pledged shirts.    Yes, we failed.  Pretty big at that.   But it wasn't necessarily because no one cared or that Noah wasn't loved.   People sit back often thinking wow, only at four pledged shirts, don't see them getting to 50, so not going to put my hat in the ring, knowing the likelihood of failure of the fundraiser is high.

As special needs parents we also experience the lack of help at times from various providers that are involved in our child's life.   Caseworkers, therapists, doctors, care providers, teachers, insurance companies, durable medical providers, and government agencies ready to stand up without notice and say bummer for you.   Too often we wind up feeling like many simply want to be a part of the problem and not a part of our solution.   We spend our days finding other resources, avenues to pursue, leads to follow all because someone makes the decision they don't want to go the extra mile and think it's funny to throw down tack strips on your journey to slow you down.  Sometimes you think some intentionally find it a sport and make a habit out of it. Makes my head spin and wonder how they can sleep at night and exist alongside their conscience, but they somehow do much to my amazement.

So what can you do from the undue stress and anxiety this all can cause?   You step back take a deep breath, realize your child is worth so much more than he is receiving.   And as frustrating as it all is, you keep going knowing that you're doing a good job, even if others make the decision not to.  We keep our eyes on the goal, we know which way we still need to head.  It might take us longer to get there, but we'll get there.   Without question we know we cannot fail today, tomorrow, not ever.   Someday you just might see the words "Special Needs Parent"  next to the definition of determined in Webster's Dictionary.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.