Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Wednesday, December 19, 2012

I've hesitated writing anything in light of the tragedy that occurred in Newtown.
I 've cried daily when watching the parents speak of their children, and seeing pictures of them smiling as only children can with such innocence.
My heart cannot make sense of "why"...
Neither can my head.

However after hearing through a mutual friend this morning that somewhere out there in this confused world of ours a kid tried to light an Autistic kid on fire because of the recent tragedy, well I just cannot say something...

I first have to say out of respect and love for humanity that by no means am I trying to shift attention to, or stand on any soap box of any kind for my cause.

I am not putting anything above the loss of those precious lives.
Please hear this.

What I have to do though is make it very clear that people desperately need educating about Autism.
People need to understand that behind the stigma of the "A" word there are very real souls existing...alongside very loving, strong, compassionate parents/families.

The daily life of Autism is enough to bring the strongest of wills to their knees.
The emotional toll it takes to watch your child live every day with this disorder is at times unbearable.
The struggles families go through to get help for their children and themselves is time consuming, overwhelming, and sometimes impossible.
Sometimes in general the trials faced through Autism are impossible.
And that is just the harsh reality of it.

However...it does NOT mean that we are bitter, worn down, angry souls.

Quite the opposite.
What I have seen through many families living with Autism is nothing short of inspiring.
It makes people stronger.
It makes those affected by it more patient, kind, and empathetic to the world around them.

It forces one to turn their views upside down and inside out.
It forces you to find the beauty in life.
It completely makes you re evaluate what it takes to live a life well lived.

Do we sacrifice for the greater good?

Do we have to find something "bigger" in all of this crazy, confusion of a world we live in?

Do we suffer silently because "we" are so misunderstood by society?

So, here is our "normal":

Hand flapping.
Body rocking, head swaying.
Loud voices.
Loud strange noises coming out of their mouths.
Extreme sensitivity to light, noise, textures.
Emotional outbursts sometimes resulting in screaming and/or tantrums.
Inability to relate appropriately to peer group.
Poor physical awareness in relation to personal body space.
Movie talk/echolalia.
Numerous food allergies.
Special/restrictive diets.
Inability to focus for periods of time.
Sleepless nights.
Potty training into ages 6...7...8
Speech therapy
Occupational therapy
ABA therapy
Social skills therapy
Specialized school programs
Special vitamins, supplements, medicine.

This is why I started writing this blog.
If only so one other person outside of my world could see my son through my eyes...
Try to understand his ticks, his outbursts, his ways...without me having to explain it.
To see WHAT AUTISM REALLY IS, and to let you know IT IS OK.
He will not hurt you.
It is not contagious.
That this is what Autism looks like...the good, the bad, the ugly.
From one perspective of course.

Autism is bigger than me.
Bigger than Kannon.

Spreading awareness of what lies beneath that misunderstood exterior of his is my passion.
This is what I will continue to do on my son's behalf so that hopefully one day society will choose to take a second look at the disorder and perhaps take a minute or two to educate themselves on something that unfortunately is an epidemic...
Yes, an epidemic.
To bring proper, honest awareness to Autism is the best way I know how to honor Kannon and all the other kids out there that someday will be adults.
Adults that we as parents, and a society want to have the best possible chance at success.
Without judgement, without shame.

I continue to pray for the victims of Newtown and their families , and I will continue to pray.
Let's not let the act of an individual ruin humanity or cloud our greater intelligence...
We are bigger than that.

Communicating honestly, openly, and in an educated manner is a start to opening the doors of understanding Autism.

I am always open to any questions anyone has in relation to Autism...no matter what they may be, and will answer them as honestly I know how from my experience.


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