Printed with permission from the author, Amy Sequenzia
I am not autism, I am an autistic person
My life is not a tragedy, it is a growing process
I have good days and bad days
My parents fought for me, not against me
They fought for my rights
The nights I spent awake made me think about my life
My family and friends also thought about it
They saw me beyond a diagnosis and saw my potential
They accepted me and worked hard to provide me with life experience
When is the rest of the world going to follow their example?
There were times of hardship but I am part of the human race
I am not immune to hardships
My neighbors learned how to see me as a whole person
The ones who never did
Lost an opportunity to experience diversity
I am autistic
I am not a tragedy
I am not robbing anything, anyone
I was not robbed of my life
I am who I am
This is my life
Copyright 2011 by Amy Sequenzia
The Price Pay For Autsim Speaks by Heather Clark raisingrebelsouls.blogspot.com
The Price We Pay for Autism Speaks
There were videos of other small Autistic children playing, but they were playing the Autistic way, and that was wrong. These children looked just like my son. Right then and there, Autism Speaks solidified all the fearful and false ideas about Autism that I had whirling around in my confused head. Everything on the site, everything surrounding these videos of beautiful children playing, cemented my ignorance, reduced my hope, and sent me into a tailspin of pain.My son became wrong (and eventually both of my sons became wrong). I cried more than a Mother should in that one darkest day because I believed it was my child who was lost. I believed the Autism Speaks lie. The one Suzanne Wright is telling our congress tomorrow. It cost me something good.
The most important factor in any child’s health and happiness is their relationship with their parents, but Autism Speaks’ work directly damaged the connection I had with mine. Because they created such a sense of urgency and panic within me, because they recommended intense and unreasonable therapies, because they portrayed my Autistic children as inherently wrong and in need of fixing, I settled into grief before I had a chance to collect my thoughts and make sense. Instead, I let a sense of separation grow between the people I love most and myself. I saw a divide where there never was one. I subjected my children to evaluations, therapies, and schedules that I imagined would create a path for our connection, but the truth is that I was letting the negative ideas promoted by Autism Speaks take that away. I let them rob me.
Autism Speaks continues to exploit my children’s neurology and they take advantage of the vulnerability of parents everywhere. They hold our hearts and minds ransom. Now they broaden their attack to gain more control within our government. They attempt to legislate their ableist ways. I lay awake late last night, and I woke up too early too. I hold myself responsible for believing their lies. I hold guilt and shame for it. There is no refund for the time and love I lost. None of my pain has worth though, not compared to what they have done to my sons, not compared to what they have done to all Autistics, not compared to what they will do tomorrow. They are creating a debt of hatred, my Autistic children cannot afford. Autism Speaks needs to pay.
Please get involved!
“We love how Evie is always happy & smiling.”
This is a picture of the note that Evie’s para educator wrote yesterday.
Today her note was short.
“Great Day! So happy all day long!”
This is my Evie.
Full of love. Full of life. Full of happy.
This is my child. And I love her with every corner of my being.
I’ve been labeled as radical–part of a fringe movement.
When did a mother’s love for her child become some sort of unthinkable political statement?
Here’s the thing. Evie is Autistic.
My love cannot be contained in those tragic little boxes that it is supposed to fit in when you’re the mother of a non-speaking Autistic child.
And I don’t try to confine it. So it explodes out all over the world.
Just like it has always done.
Because freaking damnit!
Evie deserves more love than I will ever be…
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