Monday, November 18, 2013

“This is Autism” (Means to Me…)

Written by Angel Mindretrofit

Originally published at Mind Retrofit

TIA-2 copy
Last Monday, Autism Speaks told the world that autism is:
 . . . living in despair

 . . . fear of the future

 . . .exhausted, broken parents

. . . lost, helpless, burdensome children

. . .  a national emergency

If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism” flashblog.
The words above are not new, I have seen them in various ways all over the media and social outlets since Autism became a common word in our household. In the beginning of our journey, those types of words were the dominating ones on the internet. Though, I did not understand at the time what Autism was; I still did not feel these types of things about my child. Now several years later, I have my “official” Autism (Aspergers) diagnosis, and our other son is in the process of receiving his as well.
Those words above and the similar ones like them were contributing factors to a poem that I am going to share. However, before I do I want to say a little more. We live each day with hope and a realistic view of what our children’s future have in store. Their future along with many other Autistic’s, child and adult alike, have promising futures because of what is happening right now. The gathering of voices to make a difference that cause lasting change is what I see. I see technology opening up possibilities that we cannot even image at this time – some of us may be imagining it right now! ;-)
For this flashblog we were to share what ”This is Autism” means to you.”
For our household this is Autism …
Questions, questions, and more questions. A flux and variety of sensory continuum’s that may or may not trigger another into hypo or hypersensitivities. Collections, collections, AND more collections. Arguments over whether General Grievous was ever a human. (He was not, he was a reptilian humanoid which, technically is not a human.) Tigger, Elmo, water toys, and batteries covering the counters. The beauty in a raindrop on the glass doors and the wonderment of leaves flying through the air. It is giggles at the sounds of chairs moving across the floor and terrified panic of a buzzer going off.
The ability to understand multiplication, but no understanding of why it would be dangerous leave with a stranger. It is days of routine and preparation for any change. It is beyond amazingly awesome some days and yes, it is exhausting others, but I am not a broken parent or a broken Autistic. I am not going to sugar-coat anything there are days when it is hard and I have written about it – I also, made it very clear that my child – Autism to me – is not a burden. I see happy children who embrace and accept themselves. It is a world of complexity while at the same time appreciating simplicity.
It is outrageous goofiness and distressing anxiety. It is confusion and enlightenment. I cannot write in a paragraph or even in a post all that Autism is to me. Its a poetic quandary reflecting many facets of light and color. A Prism that shines it face on the reality of where our heart and spirit are – it pulls out our innermost parts and that is where we see where we need to grow or we have just embraced something magical in our human spirit.
Autism means something different to me from when I first learned of it … Autism will mean something different for me in the future … For now, right here in this moment, these are the only words I can grab from my mind filled with a multiplex of questions and thoughts to express what Autism means to me…
I Am The Hidden 
not enough for this one, you see;
too much for that one,
can’t pass normalcy
but ah, I did learn my crumbled path,
hid behind your broken mask -
cannot speak,
I fear attack!
from my own peers and their looking glass;
then, parents, celebrities, medical broods
(come this way and that,
wasn’t my childhood brutality,
gratification; for your idle chitchat?)
must the bullying continue to brew,
I fit nowhere within your groups!
[I am not alone.]
you say to teach us how to play,
learn your rules,
your myths
your ways
conform my son/daughter for the “right” praise -
just be like you and yours
you say
I did!
I did all that you say,
for me,
a child -
worked into decay
all my odd and feral ways,
I died, I DIed, I DIED that day!
I slip away without a voice,
I cry in silence;
it’s been my choice,
I reach out; to be bit with words,
confused and torn,
social vestibules
I’ve faked my way through your halls,
only to collapse in my solace;
I quietly roam -
I tried to be your normalcy,
you cannot even conform -
your imaginary reality!
I quake behind my Autistic mind,
rejected here,
but accepted at the same time?
I am no brilliant Savant,
I am the ones that are forgotten,
the ones who hurt all alone,
in the perplexed dark
who had no answers;
for their disabling haunts
and pains that were considered so blasé,
even still it happens to this day
hold it in
tuck it away
pretend its not there
while my mind explodes
into anxiety
waiting for acceptance
in this world
from my own and
those who don’t know
a World of life, love, and Belong 
the complexities that live within me
Autism, Abuse, Tragedy
yet, I am HOPE
mixed with Pain
a journey that’s walked a long hard way
I am tears,
and laughs
and fears
my eyes feel all your words,
they soak through;
to the tips of my hairs!
ethereally they fuse
I write them into prose
you’ve been my Muse
gathering my aches blended with Yours
as a parent and Autistic being,
I share your joys, pains, and dreams
we are the same,
yet see so differently
I breathe your air -
I am changed
for better or worse
we share -
as loud
or softly as each needs to be
I am the Hidden,
the hidden disability
when you happen to gaze upon me
do not infer,
your intentions -
we do not see;
the same reality/tragedy/black-and-white conformity
I learned from you,
can you learn from[for] Me?

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