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.

He stands.

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.

Comments

[manicmommy]

Kim, You are a beautiful writer. I have goosebumps. If this were true, the world could fix the situation.

[lumardi]

This is an amazing piece by my friend and fellow 'autism mom' Kim. I hope you all read it and comment!

[lumardi]

Hey Kim-
this is a great piece. Of course, I cried my way throughout, as you so perfectly described pretty much every outing that I've ever had with my boys. It was hard to read in a way, because sometimes you are just so used to what you are doing, that you don't even realize how crazy it is.
Thank you for being so articulate, and for sharing this with the world.
You are a great writer!
-michele

[SleepingwithWardCleaver]

Wow, Kim, this brought tears to my eyes. You're SUCH a poignant writer.

[Beth Richardson]

Wow, well said and truly descriptive of the thoughts and feelings of an Autism Mom. Thank goodness we finally have a President willing to address the needs of those affected by ASD.

[chapnalli]

Kim-Excellent piece! It is so difficult for those not dealing with autism to visualize what life is truely like for us. And you gave such a visual!! In public, I use pictures, signs, and repeat myself a gazillion times. Many look on, some with compassion, others with irritation, but unless you have dealt with it on a daily basis you will never fully have a grasp of how all encombassing this life is.

When my son drops to the ground and for whatever reason, physical or environmentally, is unable to recover himself I find myself singing Blue's Clues tunes to change the subject. "Blue Scadoo, we can too!!" Steve, Joe and Blue have endlessly come to my rescue.

[sicilekira]

Brilliant description and article, Kim, as always.

Best,
Chantal Sicile-Kira

[caldergirl]

WOW this one toudhed me because it is so true! My five year old has autism and he has only said mommy once!!! but it would so different if the first kid had autism!!

[Princesspeach]

Great news!! This was in today's Shafer Autism Report:

"Autism tops Barack Obama's medical to-do list, according to the new president's website. Whitehouse.gov launched at 12:01 pm yesterday, even before the new president had taken his oath of office on the Capitol's West Front. Autism is the only disorder or disease mentioned explicitly in Obama's 24-point agenda. Heart disease and cancer don't get the call. Neither does diabetes, or other chronic diseases. But there are four hefty bullet points addressing autism. Obama called for:
1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.
2. "Life-long services" for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments
3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.
4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren't diagnosed until they enter elementary school.

More here: http://www.usnews.com/blogs/on-parenting/2009/01/21/autism-screening-tops-obamas-medical-to-do-list.html

[foe2Hg]

Thank you, Kim for describing slices of all of our lives in such an important way. The amount of stress we all live each and every day is unbelievable.

I hope that the Obama team looking into autism research and treatments gets a chance to read this. So far, the compassion and intelligence from them have not been disappointing but I do hope that they investigate the recent "revote" that was inappropriately done to stop funding for vaccine research via the Interagency Autism Coordinating Committee (IACC).

Your sentence here is a perfect conclusion and hopefully a reality as President Obama seems to have the honesty and integrity to get the job done --

"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."

[CamJam]

Wow Kim! This article made me cry - just all too familiar.
In a way it was like reading a page right out of one of our own typical days and what we go through -- only we're not seen on a national level. A trip to a grocery store, or off to school always hoping for the best, but prepared for the worst (if that's possible).

We did make it to see Thomas & Sir Topham Hatt last summer which turned out better than expected:
http://www.youtube.com/watch?v=5_5XV-yZbNw
And of course we had LOTS of Thomas toys along with us for the trip (just in case Cameron needed it)

If it were Cameron up there on stage, he would have shouted out with a smile "Cinders and ashes!"

[kellianndavis]

Kim:

One of your best. Excellent.

And BTW: "A clue! A clue! We need our handy dandy notebook!"

Has it gotten any better in the last 7 years!! You know, the *new* Joe (which of course, is now the "old" Joe since he's been on for the last 7 years) and all. He was way cuter and easier to deal with than the old Joe. So, count your blessings?? ;-)

Bottom Line: You're the best Ms. Erma Bombeck the Second.

[all4ben]

great job Kim – solid imagery. I would like to see some of these amazing autism moms run for office when they catch their breath.

Hey – one thing - why not go for a hundred billion or so for treatment, because that is what it is going to take to care for the kids born this year alone.

I'm pretty sure autism was highly under represented in DC yesterday. I was at the inauguration with my NT child – it was definitely not the place for anyone with any type of special need, president's child or not. There were no guest assistance passes that I could see being handed out. I sincerely hope the man who had to help carry his own wheelchair up the long stopped escalator at L'Enfant Plaza station is ok. However, folded in my pocket I carried a rather nice autism ribbon flag that I acquired recently [insert plug here]. I thought it would have made a heck of a nice gift for a president shaking hands along the parade, although I would have told him to consider it a loan, and that he should pass it on to other leaders after flying it from the White House.

Did you see the giant flags draped from the capital between the columns? – what a sight that would be if they were autism ribbon flags for an awareness day event. -perhaps flags made from a mosaic of pictures of our kids.

[kels4perry]

Kim,

I am so touched by this I am going to post it too all my child's teachers and playmates moms.
Thank you for sharing a glimps of our world as moms of these special kids into the eyes of the rest of the world.

[Maria531]

Very well said Kim. I have to say, as the mother of a son with autism, I often lack empathy for other people's struggles. Sure, people have tough breaks in life, but autism beats them all, so don't come crying to me. I must tell you though, I achieved enlightment watching that coverage. Listening to African-American men and woman recounting their experiences growing up in the South 40 years ago, being segregated, and hosed (my husband Tim was a firefighter and will tell you in depth how excruiatingly painful is it to be hit at close range with a fire hose), attending Martin Luther King rally's that were life changing, trying to live their lives with dignity while never believing change would happen. And then it did. Wow, that's powerful.
When I saw the MLK "I have a dream" speech, it all came together for me. I also have a dream, we all do, and God willing some day we will come together as a community and rejoice when our cure comes while looking back on those darkest days of despair when we really didn't believe. It really is all about hope and it can happen.....