Search This Blog

Monday, April 20, 2015

Why I Refuse to Read the "What Nots"

Today, exhausted and in need of support, I vented to a group of my mom friends about my daughter's epic sensory meltdowns.  They listened intently as I described her shrill screams when she is overwhelmed. They shook their heads with sympathy when I recounted her hitting, biting and kicking. And when I had finished, only one of them was brave enough to respond. "I think God only gives kids with special needs to people who can handle it.  You are so strong and amazing," she said.  

Two simple, heartfelt sentences.  Two powerful sentences.  Two sentences that other mothers of children with special needs have told me they cannot tolerate.  Two sentences that are often the focus of countless articles on the internet --"10 Things Never to Say to a Special Needs Parent" or  "5 Things Special Needs Parents Hate Hearing."  I have shared these articles on my Facebook page. I have given them "Likes." I have fantasized about high-fiving the authors.

And then my friend uttered those two sentences.  Two sentences that I was prepared to despise. Two sentences that --  for whatever reason -- did not offend me at all.  

In that moment, I came to the realization that I did not share the same opinion as some other parents and writers in the special needs community.  And while I understand the importance of writing these pieces  -- to protect our children, to educate the public, to raise awareness and to form connections -- I question if these writings sincerely bring us together.  I feel they have the potential to tear us apart. Why? Because the people who need to be reading these articles aren't -- just like a thief isn't going to take the time to stop and read a "No Shoplifting" sign in a store.

Who reads that sign?  The people who pay.  The people who are honest.  The people who care.

So who are the people taking the time out of their day to read these pieces?

They are our well-meaning friends and family members.  The people who are there when our children first receive their diagnoses.  They see our tears and feel our pain, and with love in their hearts, they say, "God only gives special children to special parents."  

They listen to us explain our many fights with the insurance company for the adaptive equipment our children so desperately need, and with admiration they say, "Your child is so lucky to have you."  

They watch us run back and forth from PT and OT and DT. And when in exhaustion, we say, "I can't do this," with encouragement they respond, "You are strong."  

These are the people who are reading our articles. The people who love us.  The people who may not be perfect, but who mean well.  The people who are trying and who care. And the last thing I want to do is push someone away for trying -- trying to pay me a compliment, trying to show me support, trying to interact with my child. 

Although I may be entirely alone in this thinking, maybe it's not just others who need guidelines on how to interact with the special needs community.  Maybe we need them too:

 I will believe in the goodness that exists in each of us.  

I will appreciate those moments when you speak from the heart.  

I will listen with an open mind for your intended message.  

I will not expect you to be "perfect."  

I will value any and all of your efforts.  

I will forever be grateful for the care and compassion you show.

To my friend who said I was strong and amazing, thank you.  And to anyone reading this, so are you.  And I say that with so much love, because I care.

No comments:

Post a Comment