Saturday, April 2, 2011

What Autism is to me ~ Letter To The World

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance. 

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is. 

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder. 

You can not understand or accept the people until you understand and accept the Autism they have. 

Autism is a part of who they are. 

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes … too many of them continue to be bullied, to be judged, or to just be ignored. 

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves... we ask you... no, we need you to know what Autism really is. 

Today, we ask for your Autism Understanding and Acceptance. 

This is what Autism is to me...

Before you read our story I want one impart one thing, autism is everyday and its very lonely. I may be surrounded by family and friends who love my family but if they don’t understand autism, if they don’t ask about it and if they don’t lend support….then yes we are very much alone.

Everyday for the last 5yrs the YuckMouth house has lived, breathed, slept, not slept autism. While I struggle to still make the entire house aware of autism we live it, how much more do we need to be aware ourselves? What we need is for the rest of the world to be aware of it, to know it like we do. But not to just know our autism but everyone else's autism, because you see autism looks different on every man, woman and child, there may be similarities but its different for each and everyone of them

With today being the kick off of Autism Awareness Month, we the community are striving to let the world know just what autism means to us.

On August 24th, 2005 I gave birth to my beautiful baby boy. Nothing was odd or unsual, he wasn't born with autism stamped across his forehead. There wasn't a test that would tell us that as he got older he wouldn't be like all the other lil boys, that he wouldn't be like my other sons. As time went on, some milestones were missed or delayed, but nothing shouted autism to me. He was just different, and looking back on it now and if I had known what I was looking for I would have known sooner, things might have been different.

I'm not going to quote facts because facts are posted everywhere you look. But those facts aren't going to tell you what to look for.

With Racer his autism was there from the beginning, it was in the way he moved about the house. How he interacted with each of us. He has four older siblings and he just wasn't like them. He didn't talk and the words he had were odd and not normal for first words. But he was persistant, he was frustrated, he was alone. As a mother I did everything I could do help him along I didn't want him to be different, I wanted him to be fine. And even though I had my doubts the entire world said "he's fine, he's a boy and boys are slower to develop". I wish those words could be removed from the mouths of the entire world. Because a mothers gut is what is usually always right. At two he was lining up cars, making snake lines with cans all across my living room, I thought he was artistic I was perfectly happy to let my lil boy do what made him happy. At night he would climb out of his crib and fall to the floor and not cry, I thought he was brave. When we moved him to a smaller playpen that was closer to the floor he would rock it back and forth till it fell over I just thought he didn't want to sleep in that either. Never in my wildest dreams would I believe he had autism.

Then we went to the doc for his check-up, he was almost three and had a total of  three words to his vocabulary , dada, turtle, and pizza. He would sit and watch the same movie over and over again and cry when I tried to change it. At that doc appointment she suggested that he might have autism she gave us the number to Regional Center and sent us on our way. I was full of questions and I was very alone in all of this. Because again everyone around me said "oh he's fine, he's a boy and boys are slower to develop"

Weeks went by before we heard from Regional Center, that was a lot of sleepless nights. I wasn't sure how to prepare for it all, I wasn't sure what the outcome was going to be. We arrived at the testing, we sat through the testing and then we waited. They wanted to talk to us after, and we waited. Then we got the talk and I suppose this happens to a lot of parents. They went through all the results how he was seriously delayed across the board, but in some areas he was doing just fine. As I sat there I wanted to scream out JUST SAY IT ALREADY, I wanted to know if he had autism. And finally after dragging my heart through the mud they said the dreaded words "your son has autism". I was given a packet a sort of welcome to autism packet now that I think about it. I was told that someone would be in contact with us in regards to our son and we were sent on our way.

That was twice that we were sent on our way, twice that my mind was filled with questioned I didn't know how to form. And twice that we as parents weren't aware of autism, that the medical profession didn't help us be aware.

Racers autism isn’t always hand flapping and spinning, it’s squawking bird calls when he’s working on a puzzle. Its toe dancing when he’s so happy he can’t contain it all inside. Its lining up his cars across the full length of his twin size bed when he’s upset. His autism is being so deathly afraid of Halloween decorations at stores that he spends the entire month of October in the house.  And for now his autism also means not being able to say I love you to his family without prompts.

Racers autism for me is sleepless nights, because he’s not sleeping. Its wondering and worrying about his future and what will happen to him when me and his father are gone. The reality of knowing that no one knows Racers autism as well as me and his father do is scary, no one else bothers to get to know him enough to live in his world for a day.  As a child I can shield and protect him, but eventually he will be an adult in this world, in a world that has yet to reach out and understand who he is.

What is so important not only for the month of April but everyday after is to be aware. We have PSA’s  about cancer and aids and all sorts of other issues, but Autism which becomes worse every day, we have nothing. But parents across the world are dealing with this everyday, struggling in a world of their own because the outside world knows nothing about us and how to deal with us.

So not just for the month of April I want everyone who reads this to be aware. I want this to be sent to everyone who could ever possibly come in contact with autism and guess what the one fact that I will throw at you is 1-110 children have autism. What does that mean to you?

This is only part of our story because our story, his story will continue until he’s old and gray. I hope before that happens the world becomes aware of autism, more then just knowing the word or what they see in tv and movies. Its real life, its my sons life and its our life and all the other children and adults out there


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