Saturday, October 6, 2012

Being your child's best advocate

While we are in Blindness Awareness Month, I thought it would be important to talk about advocating for your child. 

I have been a pediatric nurse for 15 years.  I have seen mama bears of all shapes and sizes over those 15 years, and two types stick out in my mind.  Both types were huge advocates for their children.  One type was easy to deal with, and one was not.

Since Finley has been diagnosed, I have a better understanding for type two.  I understand their attitude because they are just upset.  They are upset about the situation they are in (especially if the child was terminal) and they are scared.  Does it condone rude behavior to a nurse who is just trying to help you?  Heck to the no.  But I do understand and I always tried to sympathize with their pain.

Because of those type of parents, I know what I need to do for Finley.  I wanted to be type one - the one that is easy to deal with.  Me shouting at teachers, or doctors, or people on the phone will not only make things worse, it makes the people less willing to help Finley.  And in the end, that is always what we want - help for FINLEY.

There is a fine line between being firm and being rude, and when a parent crosses over that line, it is hard to recover.  You really do get a reputation.  Trust me on that one.

Being an advocate for Finley has been my biggest reward in this life.  Getting her what she needs and making sure all of our questions are answered to our satisfaction is my number one priority.  But I do it with a smile, and conviction all at the same time.  We go prepared with questions and notes so that we are not steered off course.  And 99% of the time, things go perfectly.

Now, don't get me wrong, I will call a person out if THEY are being rude or non-bending.  We make it very clear that we are there to work with the person, not against, and that we all are working toward a common goal.

We have also been very lucky in getting everything that Finley needs without very much of a battle.  Both Connecticut and Massachusetts educational systems and medical facilities are top in the world, and I see why.  But we have heard horror stories from other families in other states.  It is a shame what some of these families have to deal with.

So what I can offer is this:  Stand FIRM but keep CALM.  You don't have to back down from your point, but getting upset won't get you anywhere.  I have been in IEPs with rude parents and I see a change in the staff when the parent starts bad mouthing the staff.  They put up a wall.  You don't want that.  So leave your anger at the door.  Take a deep breath.  And find a middle ground where everyone can agree.


Anonymous said...


Dear Pletcher Family,
Hi,my name is Shayla,
I stumbled upon your blog 2 years ago and love it so much! I think your daughter Finley is so blessed and she is a real fighter. I pray someday that all forms of eye disease will be cured, for good.
I was born 13 weeks early and had what is called retinopathy of prematurity (ROP), Which is a potentially blinding eye disease common in preemies. Mine was stage 3 plus disease. There are 5 stages all together. Without the emergency chryotherapy that was done on my retinas'/hence (Retinopathy) its name. LOL, I would have been blind today. I was blessed that the ''Lord'' guided my eye Doctor in performing my sight saving surgery. Today I see almost with 20/20 vision! I am so glad I am not living my life in the dark.
Anyway, I ran across Finley's story and I couldn't help but learn more about her and your family from the websites. I pray that Finley gets the care she needs to save her sight, too. By the way, your RHD12 FUND is awsome and you all seem like the fund is raising awareness of LCA and your daughter's cure....
Thank You Jesus!!!!
God Bless YOU ALL!
Keep up the amazing work and fun times too!

Just Me said...

I attended my first ever IEP today and not on behalf of my own daughter. Instead, I was a Student Nurse observer and very grateful that the administration and the parent allowed me to attend with the School Nurse. It was eye opening. You are very right, effective communication is how to gain the most ground. Mama Bear all you want (I'm a prime example), but there is appropriate behavior and inappropriate behavior. Parents need to know the difference and behave as such ... otherwise, they're hurting the process (and gaining a "reputation" in the meanwhile).