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What We've Learned Tip #3: Fight For Your Voice

Thursday, July 15, 2010

While we have not been doing this long, we have already learned alot about raising a child with special needs.  We felt it might be useful for us to write down tips we have learned about raising a child with special needs (more specifically, a child with Cystic Fibrosis) to share with others.  We have much yet to learn but here's what we've gotten so far:

What We've Learned Tip #3: Fight For Your Voice

One of the things we've learned relatively quickly now that we have a child with special need is to speak up on our child's behalf.  We have learned that being our child's advocate means giving him a voice.

It seems like that would be easy since so many people are looking out for Bennett's best interest - his doctors, his nurses, his therapists, his parents, etc.  However, there are times when these trained adult voices disagree.  And it's up to us, as parents, to make decisions on his behalf.

There have been at least two separate situations so far in which we have had to look the expert in the eye and say we strongly disagree.  It is very difficult to face someone with much more training on a subject that ourselves and say we feel we know best.  But the one thing we have realized we are best trained in is: knowing Bennett.    

Daily, we attend classes at the Bennett Medical School, the Bennett Nursing School and the Bennett Enter-Any-Descriptive-Name Therapy Training Program.  We see our little guy 24:7.  We put him to bed, we wake him up.  We change him, feed him and clothe him.  We see his silly side, fussy side and cuddle side.  We are, quiet frankly, experts in our child.  And so, one of the things we have had to do is to fight for our voice in this process.

This is not for the faint at heart.  If not careful, it can leave some, if not everyone involved feeling hurt, insulted and/or unheard.  But numerous letters and periods behind one's name does not necessarily mean one is always right.

We feel very thankful to have such a fabulous CF doctor who told us recently that she appreciates second opinions and other voices.  This is so important when so many people are involved with helping our son thrive.  And we really appreciate when these other voices being heard include our own voice.

Bennett is worth fighting for and we will continue to do it.  But learning how to be heard can be hard.  We have had serious sit-down conversations with several of Bennett's medical caregivers.  This has always turned out really well for us, but has risked throwing our hearts in cardiac arrest as we can feel frightened to challenge the authority of those better trained than us.

Nonetheless, we are Bennett's advocates - his parents.  And we will speak for him until he can do it for himself.

One Response to “What We've Learned Tip #3: Fight For Your Voice”

  1. What great parents you are! We too learned this the hard way when Madeline was 3 months and in the hospital for a blockage and lung infection. We had very poor care that this hospital and fought for our child early on. Later, many mistakes were uncovered through all of our questioning. Good for you for doing what is best for Bennett...we as parents, are the best advocate for our children! I am sure you have touched some hearts in this post!

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