I watch him carefully as he speeds by me.

His training wheels clank-clank as they hit the uneven pavement in our driveway.

He’s doing laps on a track he made out of chalk.  One big circle.

Around and around and around.

I’m sitting in my winter coat on a beach chair on our lawn.  It’s the first nice day of spring but there’s still a chill in the air. His brothers have gone in for the day but Howie refused.

“I’m not done”, he said.

So neither was I.

Understanding

Understanding

I think about Autism Awareness Month.  Or Autism Acceptance Month.  Or Autism Awareness/Acceptance Month.

I think about the posts I have written in the past.  What it mean to us to “Light It Up Blue“.  Why I share what I share.

I think about what the words awareness and acceptance really mean.  I mean really really mean. And whose awareness?  Whose acceptance?

Globally? Nationally? In my town?

Awareness

Awareness

Howie stops for a moment and gets off his bike.  He surveys the track.  I can see it in his eyes that something is missing.  Something about the track is not quite right.

I can’t see it.  To me, it is perfect.  The lines may not be straight, the arrows showing the right path are jagged.

But still…perfect.

His eyes see things I can’t.  His mind works differently than mine.  He can create elaborate pictures and structures in his head and put them together with Hot Wheels Tracks, Legos, blocks and chalk.  I can’t draw anything but a stick figure.  I can sit through a two hour lecture on the history of New York’s geography.  He can’t sit through a five minute lesson on contractions.

I am aware of this.  But is he?

Howie adds one more line to the track and colors it in.  He hops back on his bike and the circles begin again.

Acceptance

Acceptance

I know the statistics.  The 1 in 88 or 1 in 50.  Or in my house…the 2 out of 3.

The answer to the question of whose awareness and whose acceptance is easy for me this year.

It’s Howie.

We’ve started talking about how his brain works differently than others sometimes.  How some things are harder for him at school and somethings are easier.  We’ve talked about sensory overload and calming our engines and using his sensory toolbox to help his body feel better.

But…we’ve never given it a name.

Up to this point, we have been his advocate.  I have piles of papers and notes and spreadsheets and doctors’ reports that speak for him.

It’s time to teach him how to speak for himself.  How to advocate for what he needs and why.  Not to escape the hard work or to use as an excuse.  But to truly understand what makes him successful.  What makes things challenging.

So if a kid makes fun of him for flapping his arms up and down when he’s excited, he can say why he does it.  Or if an adult makes him look at them in the eye he can explain why that’s hard for him. Or when he creates the most incredible stories and drawings he can explain why his brain works the way it does.

Or when he just needs to ride his bike around in circles for an hour before dinner he knows why it makes him feel happy.

His older brother Gerry has accepted it.  Tim and I have too.  We can share our version of Autism Acceptance Month as parents and siblings.

But the understanding/awareness/acceptance needs to come from within too.  From Howie himself.

We will light our house up blue and wear our blue clothes tomorrow.

And slowly…in our way and in our time…Howie will understand that we’re doing it for him and with him and his younger brother.

Awareness and acceptance will begin at home.

And then Howie can be the one to share it with others.

Free

Free

He zips by me again for the 100th time.  The early spring wind is starting to kick up and I start to shiver.

I ask him to pause for a moment so I can take a picture of the first bike ride of 2013.

He stops, smiles, and poses.

“What are you thinking about?” I ask.

“I’m thinking about being me,” he replies.

And he speeds away.  The clank-clank of the training wheels follow behind.

Awareness.  Acceptance. Understanding.

Starting locally.  So he can share globally.

Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by

And I’m gonna go there free

Like the fool I am and I’ll always be
I’ve got a dream, I’ve got a dream
They can change their minds but they can’t change me
I’ve got a dream, I’ve got a dream
Well, I know I can share it if you want me to
If you’re going my way, I’ll go with you

Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by
Moving me down the highway
Rolling me down the highway
Moving ahead so life won’t pass me by.” I Got A Name by Jim Croce

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Why do I have a blue light on my house this month?

I could light it up blue for the women in my support group, who have given me the gifts of laughter and strength.

I could light it up blue for the people I have met since my son’s autism diagnosis who are always there no matter what time zone they are in now.

I could light it up blue for my friends who have fought so hard for the appropriate educational placement for their child.

I could light it up blue for the children diagnosed this year and the thousands more to be diagnosed in the years to come.

I could light it up blue for the families who drive by my house so they know they aren’t alone.

But the most important reason I light it up blue?

I light it up blue for my family.

So I can show them that there are other families just like ours.

So they know that the stigma does not exist in our house.

So my boys know that what makes them different makes them special.

So their brother sees that we’re part of something global.

So he feels less alone.

So WE feel less alone.

On our first World Autism Awareness Day, we looked like this:

April 2, 2010

Then we looked like this:

boys in blue

April 2, 2011

And today we look like this:

April 2, 2012

I can see the progress in these pictures.  I can see the hard work and the tears and the love.

When we shine a blue light on our house, we are shining the light on those beautiful faces.

Light Up The World

I light it up blue for them.

Lay it all down
Got something to say
Lay it all down
Throw your doubt away
Do or die now
Step on to the plate
Blow the door wide open like up up and away

Let’s light up the world tonight
You gotta give up the bark and bite
I know that we got the love, alright
Come on and light it up

Light it up tonight” – Light Up The World from Glee (original song)

December 26, 2011

Dear Mr. President,

Hi! My name is Gerry* and I am nine years old. I have a recommendation of lighting the White House blue at Autism Awareness month next year. The White House is not one of the many famous landmarks that has been lit blue in April. I say this because my brother is autistic,  and it made me feel great to see all those buildings lit blue, because blue is the autism color. I made a model of the White House from a Lego set I got from Hanukkah. I put blue pieces on it to show what it might look like:

Light It Up Blue

The White House...in blue

This was just a recommendation.

Sincerely yours,

Gerry

**********

It’s time to start thinking about this again.  Last year, my friend Jess at Diary of a Mom got a grassroots campaign going to encourage the President to “Light It Up Blue” on Autism Awareness Day in April.  He said no.

We’re saying “wrong answer”.

Mr. President, make this year the year you turn the White House blue.  For my two sons with autism.  For their brother who loves them so much.  For the thousands of families who ride the autism rollercoaster every single day.

One day.  One bulb.

How can you say no to this face?

I can light it blue, can you?

I worked all afternoon on it.

*name changed for the blog, but the letter is in the mail to the President for tomorrow.

 
“Hail to the Chief we have chosen for the nation,
Hail to the Chief! We salute him, one and all.
Hail to the Chief, as we pledge cooperation
In proud fulfillment of a great, noble call.
Yours is the aim to make this grand country grander,
This you will do, that’s our strong, firm belief.
Hail to the one we selected as commander,
Hail to the President! Hail to the Chief!” – Hail to the Chief  by Albert Gamse

I saw a different side of awareness the other day.

I was in the car with two friends, driving to an autism resource fair.  It was Saturday, April 2nd.  World Autism Awareness Day.   My friend in the driver’s seat has a child with Asperger’s.  My other friend’s son was diagnosed this past fall with PDD-NOS.  He’s three.

My friends were in the front seat talking about running and other such things.  I was enjoying sitting in the back seat alone, something I rarely get to do.

I tuned back into the conversation when I heard my friend in the passenger seat say “Did you know that the Boston Garden had blue lights on for autism?”

I looked up and caught the eye of my other friend in the rear view mirror.  She smiled at me.  She knew I knew.  Because I had written about it here.  And here.  And here too.

“Ask Alysia”, she said. “She has a blue shirt on today.”

My friend turned around to me.  “You know about this?”

“I do, ” I said.  I explained that April was Autism Awareness Month, and that as part of the “Light It Up Blue” campaign, landmarks all over the world were turning on blue lights.  I rattled off the list:  Fenway Park, the Prudential Building, the Empire State Building, the Sydney Opera House, the statue of Jesus in Brazil…

“They were even trying to get the White House to turn blue for the day.”  I said.

My friend’s eyes grew wide.  And they got teary.

All she could do was mouth the word “wow” to me.  And then she turned around and was quiet for a moment.

Right then I realized the importance of the “Light It Up Blue” campaign.  Yes, it’s just a symbol.  But for a mother who is still struggling with everything related to her son’s diagnosis, it meant much more than that.  It showed her that for one day the world stood with her.  And as she attempts to understand what is happening with her child and as she fights to get her son all the help and services he needs, she now knows that there are others fighting along side her.  All over the globe.

blue house

Light It Up Blue

Before this, I thought of the awareness campaign as a way to help people not connected to autism learn more about it.  My friend reminded me that it’s also about showing people within the community that they are not alone.  That there are others who understand and will accept her son as he is.  That we will be here to help her get through the difficult days.

It is for my friend that our yellow house is now blue.

Blue moon, you saw me standing alone
Without a dream in my heart, without a love of my own.

Blue moon, you knew just what I was there for
You heard me saying a prayer for someone I really could care for.” – Blue Moon lyrics

I’m interrupting my regularly scheduled Hopeful Parents posting day to pass along an important letter from a friend of mine.  Jess, who writes at A Diary of a Mom, wrote this amazing letter to President Obama.  She’s asking him to “Light It Up Blue” at the White House on April 2nd for World Autism Awareness Day.

She asked those of us who support this idea to comment on her letter.

I’m asking you too.

Here’s the comment I left:

Jess speaks for the thousands of us parents out here looking to you to lead the way. Showing your support by “Lighting It Up Blue” would not only show parents that you are with us, but our children too.

Mr. President, my eight year old son needs to see that you understand what we’re going through as a family. His four-year-old brother has autism, and he sees the challenges his brother faces and asks constantly if there’s ways we can help. My oldest child alternates between being frustrated by his brother’s behavior and being protective and supportive. He has done it in silence because he doesn’t want any of his friends to know about his brother.

But just recently, for the first time ever, he asked his teacher how they were going to commemorate Autism Awareness month in April. For the first time, he’s going public with it.

Mr. President, if my eight-year-old son wants to Light It Up Blue, don’t you think you can too? If only to show the siblings that autism is nothing to be ashamed of? That there’s nothing more important than supporting their brothers and sisters in their daily struggles?

Thank you.
Sincerely, Alysia (mother of three boys)

Please join the hundreds of people who are urging the President to Light It Up Blue, for just one day.  Together, as one voice, we can make a statement for awareness.

Click Here for Light The White House Blue