Saturday, March 26, 2011

The Real Autism Experts.


“And the Expert is”

For the umpteenth time a new “Expert” was telling me new plans for Nicky's program, and for the lst time experience took the meeting for me. 

I listened as the confident behaviorist laid out a new plan. With ten years of implementing plans under my belt, I know no matter how capable the expert, or great the plan sounded, it would be less one important ingredient; knowledge of Nicky. 

The days of me feeling intimidated by the "Experts" are gone. It's taken a while but I've learned no matter how experienced each expert who comes into our lives is, or how much they may contribute, they don’t know Nicky. Experts know autism, they don't know Nicky. Its me and his sister Evyn who have the secret sauce – knowledge of who Nicky is - not who a kid with autism is - and that is the key to a great plan that works for him!  

I so remember when I thought it was the experts who had to be right. I acted confident, but I wasn't really. I felt like I was just mom and I didn't have a clue. Autism was a new world I was struggling to wrap my mind and life around. I had to rely on them. It was them who I thought had all the power, they knew autism, they had to be the magic ingredient to getting Nicky better. I entrusted so much in them, that when they disappointed me or something when wrong I was frustrated, angry and disappointed. If the “Expert” wasn't perfect, if they didn't get it, what hope did Nicky have. 

Today I see things differently.  I’m not a psychologist, or a trained behaviorist, I can't write a behavior plan, or perform a functional analysis. I haven't a clue what most of the acronyms mean, but I know my kid. I know in my heart when someone really gets him and when they don’t. I can see the "missing" things in a plan that you only know if you live with him 24/7. I know the difference between him being plateaued or just bored. It’s true what they say “We are the ones who really do know our kids best”. We are the experts, we are the secret sauce!  

3 comments:

  1. I never felt confident enough to speak up. Good to know it wasn't just me.

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  2. You have nailed it girl. Absolutely no one knows your child like you....nor ever will.

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