Sunday, September 28, 2014

Autism: I Just Called to Say "I'm Tired"

Autism:  I Just Called to Say "I'm Tired"

by Pam Mari 

Dear Autism: 

I got your voicemail yesterday.  I suppose I was busy when you called and to be honest I usually don't respond to voice mails because they are usually from bill collectors.  

But your question deserves an answer.  You inquired " I just called to ask how you and your son are doing, being that I'm in your life I figure I'm entitled to know". 

Yes I suppose you are right.  Let me enlighten you.  


And since you seem to operate on a 24/7/365 schedule you must never tire.  It appears that you never tire of causing pain and disruption.  
You never tire of bringing tears to my son's and my eyes.  You never tire of stressing out marriages.  You never tire of stealing otherwise enjoyable moments from my son's life.  You never tire of tying my stomach in a knot first thing in the morning or the last thing at night. 

Perhaps your perseverance, stubbornness and never say die attitude is the only thing I could applaud about you.  But alas, for me, I'm freaking tired. 

Allow me to elaborate. 

As I stated before, I'm tired. 
I'm tired of the crying. 
I'm tired of the meltdowns. 
I'm tired of the sensory issues that make simple tasks like bathing, haircuts and clothing a major battle. 
I'm tired of the rigidity of thought you cause that makes it so I cannot utter certain words or phrases to my son because for him, they are only to be used in the context he heard them in - a video. 
I'm tired of hearing ten seconds of a video over and over and over and over again. 
I'm tired of trying so hard to teach simple social skills like why it is wrong to scream at ten at night. 
I'm tired of working so hard to get my son to take one little bite of a different food.  His diet stinks you see and I worry about his health. 
I'm tired of not having anyone over to visit our house. 
I'm tired of the looks and stares of others. 
I'm tired of fighting for a local classroom placement for my son since our local school doesn't provide an autism class. 
I'm tired of seeing friends on Facebook and other social media talking about their great vacation or dinner out or visit to the museum.  
I'm tired of scouring ebay for toys that ceased to be produced ten years ago.  (although I do consider it a victory when I find one).  
I'm tired of trying to explain to my son that they just don't make them anymore and watching him meltdown because he doesn't understand that concept. 
I'm tired of being hit. 
I'm tired of other family members who chose to walk out on us telling me "it's my fault".  I don't consider you to be "my fault".  You are just there, like a tossed away beer bottle on my lawn. 

I'm tired of looking like crap.  
I'm tired of not giving a darn that I look like crap.  I used to care. 
I'm tired of not laughing.  Of course, you would not understand that one.  Or maybe you secretly laugh at us.

I'm tired of eating or should I say "inhaling" my food.  There is always a behavior or a meltdown that needs attended to at that time. 

I'm 56 years old.  I'm tired.  I'm not dead yet but wonder how long I can carry on.  My son is 16. I'm tired of worrying about how he will survive when I'm gone.  

I'm tired of coming up with creative ways to thwart a crying situation or meltdown.  I'd much prefer to come up with creative party ideas or themes for college essays for my son. 

I'm tired of wiping butts.  However I will say that in this regard I consider myself lucky as so many other autism moms are still carrying diaper bags.  

I assume by now you get the picture.  I'm tired.  I'm exhausted.  Mentally.  Physically.  Emotionally.  Creatively.  

I'm tired in every aspect, regard and measure of my life.


But don't despair.  I won't quit.  I won't give up.  I won't change my number.  Please don't feel obligated to call again.  I  will simply push the "ignore" button.  And I will carry on with the mindset that the things that appears to be killing me, may be the thing that will save me.