Fun = Stress = Peace

Crazy equation, I know.

We (me and kiddos and friends) had a super fun adventurous time at a local water park on Sunday evening.  Three days later and Anthy's every nerve (metaphorically) exploded in his body leaving a sticky, gooey, emotional mess (literal) of a 6 year old boy tonight...

(Nervous level severe and beyond...)

As I am walking out of his bedroom after (hopefully) his body is able to let down enough to rest, I had that moment when my true zen momma understanding came whispering through.  I get it.  

This will always happen...  

Understand?

This.will.always.happen.

There is no fixing this.  He y'am who he y'am.  He had fun on Sunday....  He did....  I promise....  There might even be smiling pictures to prove it.  Yet, his senses eventually fight back hard and payback's a witch.  This will always happen.  He has super fun = He pays a price three days later.  

His brain and his body are wired differently.  Our best bet is to help him adjust, adapt, and. if necessary for social purposes, camouflage his needs into something he and the people around him can live with. Someday (hopefully), it will be a blip on the screen to those standing next Anthy three days after some super fun.  Someday, he will have the skills to give himself what he needs to restore.  That is our goal and our hope.

There was a day years ago when I sobbed, "This will never change" into a phone and a sympathetic friend's ear on a desperate day as I curled on the floor next to my bed.  

Today is not that day.  

Today is the day when I can feel the small tug of grief for the loss of an imaginary, unrealistic dream.  Today is the day when I can feel that sadness while I stand next to my deep well of gratitude and joy.  

This will always happen....

and I will always be short...

and Chris will always need blood pressure medicine...

Whatevs...

Words and Phrases That Hurt, part I

I was raised to treasure the idea of free speech.  My mother was a product of the 60s, and I am most certainly a product of my mother.  She detested the idea of banning a book, no matter how disturbing.  The rule in our family was that I could read any book in the house, as long as I discussed it with her.

(As an aside:  When I was nine I asked her what the word irony meant.  Normally, she would have made me look it up in the dictionary.  This time, she went to the shelf to get a book, and insisted I read A Modest Proposal by Jonathan Swift.) J

I write all of this as an introduction because I want you to understand that my intention is not to ban words or dictate feelings.  I merely want to open up a conversation about how the word retarded makes me feel.

My son is six years old, and he has some fairly invisible disabilities.  After about 30 seconds of talking with him, however, anyone over the age of four could see that he is severely speech delayed.  I have every confidence that he is treated with kindness and respect by every child and adult at his school.  My concern is NOT about what names people call him to his face right now.

Many years ago, I forwarded an email with the word “retard” as a joke.  That was before I was a mother.  I was wrong.  A colleague gently tried to tell me I was wrong, and I could not hear her.  It was not a shining moment for me as a human being, and I am not proud of it.  Although this email was not directed toward a specific person; although I was not pointing and laughing at someone else, it was (and is) unkind to have that word in my vocabulary.

For those who do not have a developmentally delayed loved one, I think it is difficult to empathize with us.  It is difficult to understand how uncomfortable this word might make us.  It is easy to think (as I once thought) that this word does not inflict pain if it is not aimed toward a person. 

Lately, here are a couple of contexts that I have heard this word from thoughtful, caring people:

Fellow grocery shopper:  I was trying to finish that report, but my computer started acting retarded.
College student: Crap, I missed that negative sign.  I am so retarded!
It seems that some people feel that this word is ok as long as there are no names called at people.

They were NOT pointing at my son and laughing. 
They are NOT mean people. 
That word was NOT meant to hurt anyone.
BUT…

·        In that moment, that word cuts me emotionally.  It is a small cut, but it is a cut based on the knowledge that “retarded” is exactly what some people would objectively call my sweet, amazing boy.

·        In that moment, I recognize that the word “retarded” is not dead.  Every time I see how easily someone uses it in everyday language, I fear for the day that he will face children in a schoolyard who easily aim it at him.

·        In that moment, I am hit again with the realization that some people will think my child is less than because he has challenges.  I face again that most people think “retarded” is a thing to be feared and avoided. 

·        For some, it represents things not working or mistakes in thinking.  It represents viewing of Life as a crazy race in which my kiddo cannot keep up.

Again, it is not my intention to police words.  I am not offended when people use it in my presence. 

But it hurts a little…every time.