Tuesday, January 28, 2014

He's not a Fixer Upper

This isn't strictly speaking a “new” post since I've already shared some of these thoughts on Facebook and cribbed others from an extremely talented writer you should really check out.  I have her permission to share them and her approval on the few alternations I made, but even though she focuses on Autism not FASD you should still check her out.  There are enough similarities between FASD and ASD that her thoughts and posts are always extremely relevant, in addition to being lyrical and uplifting in a way I cannot manage to be.  I’m angry and snarky and fight off my fears with a bitter kind of humor.  It’s what works for me.  We all have to find our own way.

This particular post isn't going to be funny or snarky either though.  Just raw and I hope real.  First the part I want to share from Jess’s blog:

My child is not typical.

Trying to force him to be something that he’s not doesn't work. 

Let’s play a game, shall we? You, reading this, you need to have FASD now.

What?  But you don't have FASD?

Don’t worry; we’ll show you how. We’re going to give you therapy to give you FASD.

But I don’t have FASD.

Not really relevant.

But ..

We’re going to teach you to ACT like you have FASD.




But ..That’s not who I am.

Yeah, we know, but you’re going to have to get used to it.

But it’s NOT…WHO....I....AM.

No, it’s not and it hurts to be told that who you are is not okay. That how you experience the world is .. wrong. That how you act is … wrong. That how you feel, think, express excitement, show fear, communicate joy, share sadness, and, and, and .. are wrong.

It is a life of No.

It is an environment of negative, toxic energy.

No. No. No.

Here have a gummy bear for not being you, a sticker on a chart for acting like something you’re not.

It is exhausting. It doesn't work. We cannot be who we aren't.

Even if we can pretend well enough to convince the panel of judges.

Pretending to be someone you aren't isn't a life.

It hurts.

And it hurts no one more than him.

I will not strive for normalcy for my son. It’s an asinine and dangerous goal.

Low self-esteem. Depression. Alcoholism. Drug abuse. Suicide.


My son is not ordinary. He is not typical. He is not a standard-issue human. He is unique. He is himself.

I will do everything I can to arm him with the tools that he needs to get by in a world that doesn't fit. I will teach him what will be expected of him in every situation I can think to include.
And I will tell him, by word and by deed, that his quest is not to make others comfortable, but to find the space in which both he and others can be as comfortable as possible, together. That it is not a one-way street. That he has every right to say, in his way, the fact that I don’t fit the mold doesn’t mean that I’m the wrong shape. It means that we need a more flexible mold.

I once believed that normalcy was our goal. No more.

When I read this on Jess’s blog it made me cry.  And rage.  And cry some more.  This is what my son and all the others who have neuro cognitive differences deal with every.damn.day.    I saw something posted by a very wise adult with FASD recently that was saying essentially the same thing.  I don’t have his permission to post his words right now so I am not.  But I hope he will allow me to link to them or quote him after we have had a chance to talk. 

What scares me into my bitter tirades and snarky humor is, as a parent, how do you find your way?   How do you balance arming your children with tools to survive in an unkind and inflexible world with allowing them to just be their awesome selves?  Because my son IS awesome.  He is not “awesome in spite of his disability” he is just flat out awesome.    And I don’t want to change that. 

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