My Name Is Not Autism!

We have have been excelling in just about every aspect of this thing in our lives called autism; making progress with leaps and bounds. Yes, I know we have a long way to go, but it is in those seemingly small triumphs (like hearing a pronoun escape those lips) that we continue to aim for the monumental finish line. This is a race I not only got roped into without consent, but it is also one I will finish with vigor!

As we propel forward I have changed some of my thinking.... I have stopped saying that my daughter is autistic, instead I say she is diagnosed with autism. See if she is something it is here to stay. She is a girl... She is a sister... She is O-... those things won't change. But, diagnoses and labels can be (and are) removed.

My daughter in not autism, my daughter is experiencing autism.

My agenda is not hidden. My goal is to get my daughter beyond this label. Not for my benefit but hers. I know that will piss some people off. In fact, I know several camps that will claim that is impossible or that this is not all accepting of her. But, I challenge that. As we recover from the toxins that soared through her body as a fetus and infant we start to see glimpses of the Sahara Grace that would have been...

Is it wrong to want to know that child? Is it wrong to yearn for her recovery? Is it wrong to say that I won't stop this fight until the label is gone and she is able to function normally? Is it wrong to yearn to hear her thoughts, dreams and aspirations? Is it wrong to want for her to fit in with her peers without obvious deficits? Is it wrong that I get pissed off that her childhood was stolen from her? ... from her sister?

The answer is simple: no!

It isn't about the label... it is about the stigma, the deficits, the inability to effectively communicate, the lack of peer interaction, the sensitivities that interrupt the seemingly simple daily tasks, the freaking moments she can't tell me what is happening to her when I am not there to protect her...

We will conquer autism. Not because we don't love her for who she is today; that person's attributes are beyond words!! She is an incredible soul with lots of love, humor, wit, and charm. But because we want more for her than the constant feedback, "She is such a sweet child!" or "Isn't she pretty?" Yes, she is sweet and pretty.... but she is more that that. Often people say these things when the autism is in the forefront of her day.

I am sure they think this comforts me and makes me feel better. But, honestly it pushes buttons deep within me. She is more than a sweet child or a pretty girl... she is Sahara Grace, and she has so much she wants to teach the world, so much hidden in this fog that she wants to express, feeling that are bound in her, and accomplishments waiting to be recognized.

She is Sahara Grace... not autism!!