I wrote this post for HuffPo when your husband became our President. I hope it tells you what it feels like for those of us living with autism every day. Blue lights and awareness are great for K-Mart sales. We need much more to support every American with autism, and with every "version" of autism.
If the First Child Had Autism
As a Mom, one of the highlights of the inauguration was watching the first children, Miss Malia and Miss Sasha Obama, revel in their father's day. They were poised and yet still childlike. Eyes bright. Smiles wide.
Their mother, our elegant new First Lady, was able to fully share the day with her darling daughters. Did you notice the glances and grins they shared? I sure did.
And then I became sad.
As an autism Mom, I thought about how different the day would be if the First Lady had a child with autism. Here's one scenario:
The First Lady is holding her child's hand tightly as they walk toward their seats, her smile tempered by the interference from her autismometer, the scanning system she uses at all times to gauge her child's mood, temperment, ability to manage the input and to anticipate a meltdown. In her other hand she holds a metal ring on which hang dozens of plastic cards with simple pictures and words. It's an odd accessory.
The boy is wearing a pair of bulky, Bose noise canceling headphones to help him tune out the roar of the crowd. His eyes are cast down to the floorboards.
The lines laid out before him capture his attention. He stops. He sits down.
A brief look of panic crosses his mother's face. She erases it. Then gently, lovingly signs, "stand up."
He lies down.
She flips the pictures to the word "stand" and shows it to him.
He covers his eyes.
She starts to perspire despite the cold, turns to her Mom and nods. The older woman responds and reaches into the bag she is carrying. She hands the child a Thomas the Tank engine toy. He accepts it, clutching the toy, waving it in front of his face.
His mother's shoulders drop a few inches as they make their way to their seats.
She tries to watch her husband, to admire his handsome face and take note of his momentous day. This is his day. But autism is along for the ride. As always. When the speaker (who was it again?) finishes, her son's voice rings out amid the cacophony of applause, "A clue! A clue! We need our handy dandy notebook!"
She breathes out -- shows her son another small card. "Quiet." He squirms. Her mother hands her a small surgical brush with which she strokes her son's palms.
Her husband is about to take the oath. He looks at her with his, "Are we OK?" expression. She will not add to the gravity of the job he is about to accept. She will not cloud his day. She smiles and winks.
She takes her son's hand and together they stand. Her mother wraps her arms around the boy, applying pressure to his torso.
The President takes his oath. "Elmo Loves You!" cries the boy. The crowd emits a nervous laugh. The President bends to his son, kisses his head. The new First Lady takes her child's hand and fights back tears, praying her face reveals nothing but love and pride.
The First Family waves to the throng of supporters. To the world. The boy waggles his fingers in front of his eyes. His head nods to a song only he can hear. The First Lady kisses her husband, her hands cup his face for a moment.
In that second, the boy bolts up the aisle. There is a large, wet stain on his pants as he scrabbles toward an exit. The day is simply too much for him.
His grandmother is right behind him. Leaving her daughter and son-in-law, now the First Lady and President of the United States.
The next day, the President announces an initiative to study every possible cause of autism from genes to vaccines and to spend millions on treatment.
In four years, he plans to have his son speak at the inauguration for his second term.
Kim Stagliano is Managing Editor of Age of Autism. Her book from Skyhorse Publishing, All I Can Handle I'm No Mother Teresa; A Life Raising Three Daughters with Autism is available now. Visit her website at Kim Stagliano.