“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 able to give her.
And I have all of the love.
Just like all parents do.
And poor Evie.
On paper, she looks like a good poster child for the Autism tragedy story.
Non-Speaking. Insomnia. Needs full personal care. Needs 24 hour supervision.
I know that many of you are thinking that Evie should have come with her own melancholy violin soundtrack. And probably me too.
Because that’s what you’re taught to believe.
But I am here to tell you that all of those Autistic despair ticker points blend into our life.
The hardest part of having an Autistic child, for me, is dealing with other people.
And the fear that grips my soul and makes many of my nights sleepless is that Evelyn is growing up in a world that hates her.
Growing up in a world where her life does not have the same value as your child’s life.
Because Evie is Autistic. And your child is not. Real life example, my child could be denied a life saving organ transplant because she is Autistic. No, that’s very real. Not made up. And don’t, for a second, think that doesn’t cross my mind every time we visit her cardiologist.
And how do we get to a place where Autistic people are not considered as worthy of a heart as non-disabled people?
Well I will tell you. The Autism factory.
Yeah, I know it is the only Autism “charity” that you’ve heard of.
And oh boy do they do a great job of spreading “awareness.”
Please tell me…the co-founder of which other charity would say this about the population they claim to represent? ”Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. ”
Or can you let me know, pretty please, why I shouldn’t be outraged that Autism Speaks churns out videos where a board member talks about wanting to drive their kids off a bridge IN FRONT OF THE CHILD in the name of “awareness”? And all like it is normal and natural to feel this way.
That’s not awareness. That’s abusive. That’s a person teetering on the edge of criminality. And in no other circumstance would this be acceptable. Only if you’re the mother of an Autistic child.
And all of the world sees this propaganda–because it is Autism Speaks. They have what seems like an infinite budget to describe Autistic children as monsters. As money-sucking burdens to their families.
As completely and utterly worthless. No I am not being dramatic. Because you don’t spend gazillions of dollars trying to prevent and cure children that are not Autistic.
And that’s what Autism Speaks spends their money on. Churning out fear of Autism. And telling the world that we need to wipe out the existence of these beasts.
And I’m not supposed to be angry to have my child described to the world in this way. I’m not supposed to rant or use harsh language to describe the fact that this organization is promoting the hatred and bigotry my child will live with every day for the rest of her life unless something changes.
I’m not supposed to be angry that other parents think it is acceptable to KILL their Autistic children. Never would the majority of the population defend a mother who tries to kill her child….unless that child is an Autistic burden.
It is somehow outrageous that I would say that I have never dreamed about killing my child. That I don’t fantasize about some non-Autistic version of her. I’ve been dubbed “sanctimommy” and called a liar for saying that I am not jealous of parents to non-autistic children.
I am quite literally an outcast for loving my child the exact way that she is. Other parents are expected to love their children without restriction or condition. My child is Autistic. I am expected to want to change/cure/prevent/fix her.
I’m not sorry for loving my child.
I’m not sorry that I’m angry.
I’m not sorry that I don’t think my child is a monster. Or that my life doesn’t look anything like the one that Autism Speaks would like you to believe I lead as the parent of one of those full on Autistic kids.
No. I will not feel guilty for feeling blessed to have this amazingly perfect specimen of a child as my own. I will not hide my pride for her.
I will not play nice with the people that seek to diminish her human worth to the point that her life could very well be endangered.
My daughter is perfect. I want to change the world. Not my daughter.
This is why I support a complete boycott of Autism Speaks and all of its affiliates. And I am asking. Rather begging for you to please take one second out of your life and sign the petition right here. And if you’re feeling extra kind, like our facebook page.
I’m asking you to do that for Evie. My laughing happy girl. I am asking you to do that for me–her adoring mother. And PS–as the organizer of the petition I will know whether or not you care as I have access to the list of those that sign. I am only half kidding about the caring part.