Monday, October 24, 2011

The Elephant in the Room

I am Poem
Happy,bright, funny, silly.
Related to Charlie, who is silly and a really funny klutz;
Mom who gives me good meals and great hugs; Dad, who really cares for me.
Who enjoys Teddy bears, swinging and playing games on the computer.
Who feels happy with stuffed animals, silly at home, and great when hugging.
Who needs Teddy bears, lots of love, and many warm hugs.
Who gives happiness to people playing games with him, gives frustration to his little brother, and gives happiness to most of the other people around him.
Who fears getting lost, getting beat up, and having his underwear hoisted up a flagpole.
Who wants to write an adventure novel, to see Rascal Flatts, and to travel around the world.
Who dislikes bullies, cheesy movies, and mean dogs.
Who sees other people as smart, silly and serious.
Who lived in California and Washington.
by #1 Son

My son finally completed his evaluation with Children's in late August for Aspergers. I struggled about whether to post this. I want to protect my son and I now realize that Asperger's makes him more than less. So, I want to share this part. (What's in a label?)

It took us a FULL year to jump through all the hoops and receive a diagnosis . That is entirely to long to ruminate on things. The verdict is HFA - High Functioning Autism. In most circles I believe HFA and Asperger's are used interchangeably.  It was not surprising to us the parents this ended up being the diagnosis.  IT is disheartening that it took so long for us to get to the experts. I really want to say I am totally fine with the diagnosis. I am not but that is my problem not my child's.  I find myself dwelling on all the missed opportunities or all the times I have been judged as a bad parent. (there have been so many times) We have Experts where were they when my child was struggling?  Why didn't they see this earlier?  Hey, my Kid is 13 years old where was his early intervention? Maybe I just need a moment to feel bad about this specifically how my son was treated by the school system and the judgement and hopelessness I felt.

If anything was reinforced for me in talking to the experts,we have been doing a fine job with very very limited resources and support. All in all, the label doesn't change the behaviors we have to work on though it does go a long way to explaining some of them..  This is probably not going to get my child or us parents any additional support. This isn't the golden ticket. It is really hard seeing it written down.  The reality is overwhelming. I fight against the urge to label behaviors anxiety, asperger, ADHD. The behavior is what it is. I can't get caught in the web of the labels.

This is the kind of stuff that keeps you up at night. So welcome to the elephant in the room.  Since you are here to stay, we will embrace you and your reality. My son has found his tribe and won't be voted off the island.

Here are a couple of articles/ blog post that are really resonating with me.
Austism : Putting Ezra First
Drinking the Skool Aid
Beyond the Broom Closet

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