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

Monday, April 2, 2012

My hope for awareness.

1 in 88 children WILL HAVE AUTISM.

More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.

This statistic is nothing short of devastating.
Devastating because there is so much more we need to do for Autism.
SO much more awareness, education, resources and funding needs to happen.

Autism receives approximately 5% of the government research funding of many less prevalent childhood diseases.

Leukemia: Affects 1 in 1,200 / Funding: $277 million
Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
Autism: Affects 1 in 88 / Funding: $79 million

If you don't already know someone who is affected by this disorder...you soon will.
With numbers like this we need to understand what we are dealing with and how we can help.
We have to educate adults and children about Autism, so that those of us living with it can function in society without the added stress of being judged or misunderstood.

To recap, just as examples, over the past few years Kannon has been pushed off a 15 foot playground, had sand dumped all over him, been pushed down to the ground and kicked, laughed at in his face, spit on, called "stupid" "retarded" "dumb" "weird" "idiot"...and at the end of most days he is always smiling, happy, and on some occasions he wiped the tears from my face.
I have had parents tell me I needed to "take control of my child", "keep him quiet" and "get him under control"
I have also been glared at, had eyes roll at me and disapproving head shakes galore.
Our family has also had to empty our pocketbooks to help pay for therapy for Kannon.
At one time our monthly expenses were up to almost $6000 a month, just for services alone...
Not to mention the special diet, supplements, and medicine Kannon needed.
It can be beyond overwhelming.

With the lack of funding and education we have a very long road ahead of us.
There are still so many unknowns in relation to the disorder, the professionals who deal with it and of course the families affected by it...we are the ones who have to fight harder for ourselves and our children...and ultimately the disorder.

There is not a day that goes by that I wish I could just take a deep breath and not have a heavy heart due to all the unknowns I will face.

Will Kannon ever recover from Autism?
Will he ever live on his own without me having to take care of his basic self help needs that so many take for granted?
Will I be able to physically and emotionally care for him until the day I die?
Will I have to someday watch him live in a care facility and go "visit" him instead of being able to maintain a sense of freedom for and from my own child?

Those are the "bigger" worries I have...
But let's not forget the smaller, more in your face ones too.
Like, will Kannon ever stop yelling instead of just talking in a normal tone of voice?
Will he ever stop flapping his hands and repeating himself over and over and over again?
Will he ever sleep through the night consistently?
Will he ever be able to have a conversation with me?
Will my daughter forgive me for having to put so much time and energy into Kannon?

It is all too heavy to contemplate, so I don't.

I wake up every day, thank my angels for what I have and move forward.
I thank god for allowing me to be a mother, and for all the life lessons I have learned so far.
Also for bringing into my life other mothers that I have met through living with Autism...amazing, strong, honest women who have become my closest friends and give me strength through their actions.

You can live with Autism.
You can fight for yourself and your child.
But you will need help, you will have to open your mind and heart to new roads that you never thought possible.
Autism throws every curve ball possible at you and your life...just be prepared for a bumpy ride and you will be fine.
You can be happy every day and not worry about all the unknowns.
Perspective allowed me these freedoms.

I share my stories for hope of a better tomorrow for Autism and those living with it.
I never want pity, praise, or a pat on the back.
All I want is for people to open their hearts and minds and realize there are other possibilities out of their comfort zone.
That there are other types of lives to be lived, and not to be judged.
I have changed my perspective because I had to.

Now it is societies turn to change theirs.

peace :)


  1. Wow! I had no idea about those statistics. Love to you, K, K, and K. :)

  2. What a powerful post! I had no idea the stats were so staggering. I will help you get the word out on this. You are such a brave soul. Incredibly inspiring and are living your life with such grace despite your added challenges. My heart goes out to you. Lots of hugs for you and the fam :)