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

Tuesday, March 22, 2011

April 2...Autism Awareness Day

It should be more than a day, but I'll take it.

Those of us who write about living with Autism day after day try to bring awareness to the disorder in a way that humanity should see it...the good, the bad, the truth.
I respect all the people out there more than I could express for their every day battles with the disorder, their child, society, doctors...but most of all with themselves.
I see so much love within these people, so much spirit...it is truly inspiring.

So to them, to YOU...you are inspiring whether you know it or feel it.
You are the reason your child braves another day when they no longer can hold their own little heads up.
You are a voice for them when you look at their faces and read what they need...what they are fighting so hard to say to you...to the world...
You are their punching bag when their body releases itself...even though I know they hate that they can't stop hurting themselves, and you.
You are truly all they have at the end of the day.

We may not always know what to do or know what the "right" thing to do is, but we keep fighting for another day for our children.
We keep fighting for the chance that one day they may just walk up to us, quiet bodies, hold our hands, look us in the eye and say to us-

"Thank you...I Love you and know all that you did for me.
I watched you the whole time fight, cry, and smile at all my crossroads.
Thank you for not giving up on me...for loving me in the worst of times...and for always holding my hand and talking to me even though I could not talk to you.
Thank you."

If only one day I could hear those words, or any variation of them :)...I would have validation that it was all for something...something bigger than myself and Autism.
I would know what I already feel with all my heart and soul...just like all of you who fight for every moment.

That is what we should make humanity "aware" of...
That a day of recognizing this disorder is like an eternity of hopes, dreams, and trials for us who have and will live with it for the rest of our lives.
We sometimes have to fight for minutes...seconds with our kids...it is that intense.

So a day to raise awareness for Autism, I'll take it...
Let's use it wisely though.
Eventually as a society we need to transition into fighting for lives...for resources...a cure.

But for now, my praise, my heart and support goes out to all of you who fight every day for your child.
It is the parent(s) who should receive the awareness.
For without us, there will be no future hope for Autism, it is our love that drives this journey.

We can argue biomedical, causes, vaccinations, diets, etc. ALL day long if we wanted.
Let's not.
Let's try coming together and raising the level of compassion and love for these kids so that they may thrive in our society...so that they can grow up with examples of love around them, not debates.
And lastly, if you know someone who is raising a child with Autism, offer your support, love and praise...
You never know what a difference you might make if you try.

peace :)

In honor of this day I wanted to share a personal slideshow...if you want to watch it here it is...
The video at the end is very personal and something I haven't shared until now...
In hopes of a better understanding, compassion and acceptance.

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Tuesday, March 15, 2011

Different perspectives...same disorder

If you have a chance check out this blog and read the post, "My Autism Mirror"

It was one of the more honest posts I have read about living with Autism.
It struck a nerve, in an honest way...in a way that sometimes people don't like sharing because it can be uncomfortable.
I thought it was a great post and one that is worthwhile to check out...

Bottom line is that Autism really does suck.
It really isn't fun, or glorious, or pretty.
It really does force us as parents/people to face ugly truths every single moment.
In fact most of the time it is so frustrating and terrible that if you didn't have both feet planted on the ground and your head on straight you just may loose all control of things.

I still maintain my perspective that Autism is a gift.
I have accepted it into my life and I have made it something I can learn from in a positive way.
That doesn't mean it is fun though.
It just means I CHOOSE to deal with it in my way, in my head, with what I have to offer.
My way may not work for others...and that is how it should be.

Some people get "annoyed" or frustrated when people write about Autism in a positive manner.
I have read through tons of different blogs and comments, etc.
It is a mixed bag of both sides and everything in between, but there is an underlying resentment that comes out from parents who live with Autism.
I will stand by my belief that you make your own world whatever you want it to be.
No we cannot control anything with Autism, but you can control how you react to it and how you feel at the end of the day...

There is a fine line between hating the disorder and the innocent little person with the disorder...
They cannot help any of what they do.
They simply are trapped inside their body that does what it wants when it wants and they make everything ten times more difficult than a "normal" child.
Most parents truly get this...others have a harder time accepting the difference.
And believe me, I am NOT judging.
We all do the best we can...period.

One parent stated that there is nothing beautiful about disabilities.
That they are socially "ugly"
They may be right...
And this is why we must educate people on the things that can be beautiful...
That can be looked at in a positive light.

I too have been shit on, literally and figuratively many times.
I too have gone a week with only 4 hours of sleep while maintaining a household and acceptable level of sanity on my own....no help.
I too have been bit, kicked, punched, and screamed at for hours.
I too have cried myself to sleep months at a time.
I too am divorced and trying to raise 2 kids, one who has Autism.
I too have to listen to other parents complain about their "normal" children doing things that would be a Fabulous, no unheard of day in my world...
The list goes on.

But here I am.
Still standing and still able to see the beauty in all of this.
And yes, like the post from another mother living with Autism I too judge myself every single day...and it never gets easier.
I am harder on myself than any society could ever be...we do that to ourselves.
As parents living with Autism we have no choice in doing so.

We all have our ways of coping.
It makes us who we are...and I can appreciate and learn from watching others.

I can only hope that each day MY way will get me out of bed and get me through the tough times...hopefully smiling...hopefully calm...hopefully hopeful for our future...

Hopeful that my love for Kannon will continue to grow so that my world can feel just a little smaller every day.

Hoping that "mirror" will get smaller and smaller until one day it is gone.


Thursday, March 3, 2011

Hope rears its beautiful head...

I have always wrote about hope...
I have always believed in it and surrounded my soul with it.

This week it has shown me why.

Kannon started school and every single day has woken up with the biggest smile and anticipation of his day.
He wants to go to school.
He loves it :)
He has helped me pack his lunch, and helps decide what he will wear...he likes to dress up in button down shirts...so fancy.

As a mother to a child with Autism I always have to believe in things that sometimes just aren't tangible.
I have to believe in things that are out of reach
This week I have reached a lot of those things, I have found feelings so great that I only thought to be daydreams.
Autism is tricky like that...it likes to keep you constantly reaching...constantly searching.
But at times like this I know Autism is a gift.
Kannon starting school has been such a gift.
He has found another part of himself that was previously buried...there, but buried.
It has surfaced now and it is so amazing to see his soul reaching out from inside.
He is truly reaching and growing...and it is without words that I can express the joy it brings to see him so happy.

There have been so many sleepless nights that I would hope this kind of happiness for Kannon.
I hoped and hoped that he would find these things inside himself...I just never knew what or how it would all come to be.

I know some people might think starting school and all this talk of hope and reaching and happiness is over the top, or "simple"...
BUT this is why I write about such things.
In a world of Autism the simple things are what absolutely rule our world...they make everything that much harder for us sometimes.
This is why I write about simple things...people who really want to understand this disorder must know that the simple things are sometimes impossible for families living with Autism.
Sometimes we never get to experience the "simple" things in life...
AND/YET sometimes with Autism the simple things are all that we do get to experience.
It is all about perspective and patience.

I feel so often the world buzzing around me so quickly sometimes...(perspective)
People in such a hurry to get from here to there...(patience)
Like this morning at school while we were waiting for his teacher to come meet the class...we all stand there against a wall by the school buses and wait.
And I look down at Kannon who is just watching it all, taking it all in.

Then he stops and wraps his arms around me and nestles his little head into my side...
"momma look at the flower...it's SO beautiful mamma"
"what flower baby?"
"over there mamma...in the grass..."

I search and search...and through all the running chaos of kids around me there it is.
20 feet away in the grass...a dandelion...alone...happy to be out in the sun...reaching up towards the sky for better things...
Some may never see it because it is after all a "weed"...
But against the vastness of it all, it is still a living, growing beautiful thing just reaching for what feels good...for what it knows to be life...


peace :)