February 8, 2012

You Do Not Know Them


by LJ Goes

I just put my son Noah to bed. His brother and sister went into his room and showered him with kisses. Then I tucked him in. It went like this.

Me:  Good Night Buddy, I love you.

Noah: Staring at me. Parts lips, exerting air, but, no speech comes out.

Me:  Love you love you love (shower face with kisses)

Noah:  Staring at my eyes, parts lips. Trying to talk, just a squeak comes out. Rests his head on his pillow frustrated.

Me:  Its' okay. I know it's in there. Don't worry. We'll get it out. I know you love me. I know. And you know I love you big man. I am very proud of you today.

Noah:  Lips open again. Has not yet broken eye contact. Now he does, looks down, and sighs (defeat).

Maybe tomorrow will be the day he says, "nightie night mom, love you too." It happened once. It will happen again.

Dear Pharma and DSM Team,

You know NOTHING about autism. You made up a word for behaviors you didn't like. Behaviors you are too busy and profit-minded to investigate. No one, and I mean NO ONE, likes petulant children. You know this. Let's manage them. Get them to go with the flow. Process them out.

The one thing about autism everyone can agree on is that it consumes everything. Our time, our money, our patience, our families. But, parents, parents like me? We know about the lies you've told. If you think for one minute my son prefers the company of the iPad to interacting with me, you are sorely mistaken. He wants to be with his family. With his siblings. He wants to eat normal food, go on family outings, go to restaurants and parties like normal kids. He wants to do all those things because he is adventurous and smart and funny and loves to laugh.

But, you took all those things away from him when you destroyed his auto-immune function, his bowels and his central nervous system. I will forgive you for those things. Yes, you heard me right. I will forgive you. I will even sign a piece of paper saying I forgive you and you don't have to pay me a penny. But, I will never ever tolerate you saying he does not desire social interaction, that he does not possess empathy or sympathy or that he is incapable of understanding complex human emotions.

Those descriptors belong TO YOU. Your narrow focus and short-sighted children killing science is evidence of that. DO NOT, I repeat DO NOT, assign these attributes to my child and his friends. Because YOU DO NOT KNOW THEM. We know who are children were before you took them from us. And we are getting them back. So, keep your absurd observations and descriptions to yourself. My friends and I will fix the damage you've done, and our kids will rise up, prove your worthlessness and remove your power. It's how it works. The oppressed always rise to power eventually. But, the people in power are rarely fond of history lessons. No matter. IT. WILL. BE. Count on it.

Sweet, sweet dreams, NOAH's mom

5 comments:

Maryann said...

Beautifully said!

lkwberry said...

Powerful and beautifully written! Keep faith and keep trying! Didn't hear my son speak for eight years. He would open his mouth and have gibberish come out and look so frustrated. Can only speak in short phrases, but says I love you, sweet dreams every night and his voice is beautiful!

ipurl6 said...

Very beautifully written. "Tears"

Renna said...

Wonderful and heartfelt. It took a long time for my son to string together "I love you" but the moment was pure magic! Your love will make it happen...

Savvymedialady said...

Very powerful and beautifully written! One mother started her organization DC Autism Parents (DCAP). Her story is one of passion and determination. Her road to redemption for her autistic son began when she sued the D.C. School system for not given her son an “appropriate education” and won.
Here's a link yo her organization:
www.dcautismparents.org