Monday, July 29, 2013

Living Well Is the Best Revenge (GBE2 #115 Topic: Faith)

I go out of my way to try NOT to write about autism.  

For starters, there are so many other bloggers that do a much better job of capturing life with autism than I feel I could.

And then...my life with autism...isn't really all that difficult.  I see what other parents go through...what other children have to endure...the lives of some of the individuals that I have cared for during the course of my career...and I figure that I'm pretty damn lucky!

On their worst days, my kids just seem to be a little weird. 
Nathan can come across as kind of a jerk...uncaring...cold...a kid who has no use for the world around him or the people in it.  It's just his way...personal connections are difficult for him and sometimes, I think he'd prefer it if we all communicated in the virtual world--his comfort zone being almost strictly behind a keyboard.  But there can just as many moments when he does engage with us and his smile and sarcastic sense of humor--that took forever for him to develop (he had no idea we were joking for years!!)--light up the entire room.  
Bear is Nathan's opposite.  He loves to interact...too much sometimes.  He loves to ramble on and on (and on...) about his favorite topics:  the video games, Minecraft and Skyrim, and watching videos on Youtube.  Even at the age of almost eleven...and at the size of a small adult...his favorite place to be is wedged between Jeff and I on the couch with me scratching some part of his body.  He walks around the house with "t-rex arms" and spins around and/or flaps his hands (what he has named "advanced jazz hands") whenever he hears the theme song to the television show "The Big Bang Theory". 

Nathan has one really good friend.  Bear maintains that his family are the only friends he needs.



While Nathan tends to keep things inside and doesn't like to talk about what's bothering him, Bear freaks out about almost anything and is prone to meltdowns over seemingly minor things.  As Bear has matured, the meltdowns have become smaller and easier to come back from...but they still happen...frequently.

These differences, I think, are why Bear was easily diagnosed at the age of five but Nathan wasn't diagnosed with Asperger's until he was fifteen.  Bear can be loud, obnoxious, and rude.  Nathan is generally quiet and well-mannered.  Adults like Nathan because, even when he was younger, he acted like a tiny adult.  Bear's emotional and social age is at least 3 years younger than he actually is.  A ten year old, who is five feet tall and weighs 150 pounds, having a "temper tantrum" like a five year old isn't an easy pill to swallow for people who just don't get it.
All of Bear's life, people have shunned him.  Sometimes he notices....sometimes he doesn't.  And sometimes, people pull me aside to tell me what a rotten child he is and how it's all our fault!

Sometimes...they say these things when he is in earshot! 

We didn't discipline him enough.
We coddle him.
He isn't really on the autism spectrum--we're just bad parents.
He doesn't need special ed--just a good smack every once in a while.
He should know better not to give us a hard time by this age.
You dropped the ball with this kid...shame on you!!

Sometimes, these statements come from people who are supposed to be loving and supportive.

Often, the very idea that people feel that way--when they are supposed to love us unconditionally--causes more pain and anger than I can handle.

But I have faith.

Not necessarily in them...but in my kid.  That he will continue to be the happy, charming, amazing kid he's always been...and that he will grow into an even more amazing adult.

Proof...

that we never dropped the ball....




6 comments:

  1. We have the most amazing family EVER!! I wouldn't change ANYTHING about us. Love you, Babe. We are the best.

    ReplyDelete
    Replies
    1. Thank you dear!!! I'm pretty fond of us as well :)

      Delete
  2. What a great post. Living with autism x 2 might be a challenge and the pain of those who just won't understand is unbelievable, but I can see that you clearly have things under control. Not on an every day basis, of course, autism would never allow that! But rather on the big picture. You know their needs and you know their value. Really, what else matters? What other people think? That's just none of your business. Now carry on with all that good not-ball-dropping parenting and loving and just ignore those who don't care enough to learn.

    Your kiddos are very lucky. 💗

    ReplyDelete
    Replies
    1. Thank you Jo! I get the idea that what others think is none of my business...what makes it difficult is when they make it my business...make it their mission to tell us how badly we are doing. Most days, we just truck along and everything is fine. But those words hurt and no matter how much I try to forget them...sometimes they come popping back up. You're right though...some people are just too ignorant to learn and think they know all the answers :)

      Delete
  3. WOW i had no idea...and think of our precious GBE2 other one who also has two and see YOU TWO as sisters, spiritual sisters. Due to your sensitive sharing, loving patient education for US truly can say i get it, and to have YOUR FAITH is truly GREATER then a mustard seed..its pure radiance and it teared me up reading this..i so so get it and wow love on my friend (an honor to say) LOVE ON!!!!

    ReplyDelete
  4. I don't know what it's like to be in your world, but it seems like you're doing it just great!

    ReplyDelete

I love hearing from you. Always feel free to leave a comment...or just stop by to say hi. Thanks :-)

There was an error in this gadget