This is My Autism

March 16, 2011 at 8:57 pm | Posted in Uncategorized | 573 Comments
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Dear Mr. President,

I need your help.

Last year, on April 2, 2010, you issued a statement expressing your support of World Autism Awareness Day. I appreciate the fact that you did that. Your support is vital to our community.

But I’ll be honest with you, Mr. President. I didn’t even see your statement until I really started digging around on the Internet last night. With all due respect, Sir, if I didn’t see it, I’m guessing almost no one saw it.

Mr. President, when you spoke to a parent of a child with autism in a crowd outside Philadelphia in 2008, you spoke to me. When you said that your General Counsel had an autistic child and that one of your best friends in Chicago also had an autistic child, I leaned in closer to my screen. When you told that parent, “I know how fiercely you love your child, but I also know how hard it is, how much work it is for you and how much support you need,” I listened. And I dared to hope. I dared to believe that you might make things different for my little girl.

My daughter has autism, Mr. President. And you’re right; I love her fiercely. I love her with a ferocity and a tenderness that can only co-exist within a mother’s heart. I love her so much that there is nothing on God’s green Earth that I wouldn’t do to help mitigate her challenges. There is nothing that I wouldn’t do to make the world less foreign to her, less hostile. There is nothing that I wouldn’t do to ensure that every day when she steps outside our door, she is met with tolerance and understanding and compassion. That she is seen by the world as a full and complete human being – not as a set of challenges encompassed by a single word. There is nothing that I wouldn’t do to ensure that her talents and unique gifts are recognized, fostered and celebrated throughout her lifetime.

Above all, there is nothing that I wouldn’t do ensure that she has the opportunity to contribute to our great nation.

Mr. President, as much as it pains me to admit, these are not things that I can do alone. I carry my soapbox wherever I go, but my platform is small. I need your help.

On April 2nd of this year, the world will join together in observation of the Fourth Annual World Autism Awareness Day. As you know, this day exists because it has to. Because our children’s ranks are now growing in undeniably epidemic proportions. Because 1 in 110 children are now on the autism spectrum. 1 in 110. Please take a moment to let the enormity of that number sink in. The numbers aren’t getting any smaller. And someday mothers like me – mothers of 1 in every 110 children – will no longer be here to take care of our precious babies.

If our children are to thrive without us, it will only be in a world that understands them. The people that they encounter every day will need to know what autism is – what it really is – day in and day out. They will need to know how hard my baby works to communicate. How much time and support it’s taken to get her where she is now. How proud I am of everything that she has accomplished. How much potential she has. What an incredible human being she already is. How much this entire group of people has to offer our society if we are willing to see them – really, truly see them, recognize them and include them in our communities.

On April 2nd, landmark buildings around the world will participate in a campaign to help shine a light on autism. They will Light Up Blue as a statement of solidarity, celebration, understanding, compassion, and hope. They will light up blue to say, “We are here. We see you. We hear you. We support you.”

On April 2nd, I will change my porch lights to blue, Mr. President. And in so doing, I will talk to the ten or fifteen people who may ask me why. Ten or fifteen people will walk away that day with a new understanding, a new sensitivity, a new commitment to help make life better for children like my daughter.

Sir, I need your help. I need you to light YOUR house blue too. Because when you do, you will start millions of conversations. Ten or fifteen million people will ask why, then ten or fifteen million more. And people like me – and thousands upon thousands of our friends – will be there to tell them.

Mr. President, I’ll be honest. We need a lot more than blue bulbs. We need research and a renewed and reinvigorated commitment to real scientific inquiry and critical thinking. We need the money that you promised to fully fund IDEA. We need sweeping legislative change. We need a federal mandate on insurance reform. We need passage of the ABLE Accounts Act and a reauthorization of the Combating Autism Act. We need affordable and appropriate housing for our children as they transition into adulthood. We need the money that you promised to allocate to autism services, research and treatment. And far more.

It’s a heck of a list. And I get it; I do. Those aren’t things that you can do in a day.

But what I’m asking you for right now is something that you CAN do in a day.

I’m asking you to help us begin a conversation in earnest. To light the fire of awareness in our nation. A nation where a mother dares to hope that when people talk to one another – really talk to one another – the world can change for her children.

This is blissfully apolitical. Autism is not partisan. It does not discriminate between black and white, privileged nor impoverished. It simply lands where it will and affects every aspect of an entire family’s life.

Your girls are beautiful, Mr. President. They are poised and confident, graceful and self-assured. You must be incredibly proud of both of them. I ask you, Sir, what if Malia or Sasha had autism? What would you do to help them? I’m guessing the better question is, What wouldn’t you do?

At the very least, I know that you’d buy a couple of light bulbs and help spark a conversation.

For my incredible daughter, and for the million others like her. For their mothers and fathers and siblings. For their aunts and uncles and grandparents. For their neighbors and friends. For an entire generation who will either bear the brunt of blind support or reap the rewards of full acceptance  – acceptance that can only be born of awareness.

Please, Mr. President. We need your help.

Sincerely,

Jess, Proud mother of two beautiful girls and author of Diary of a Mom

Diary of a Mom

P.S. I respectfully urge you to read the comments below. They have come from every corner of the autism community – truly united in its request for your support.

 

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