December 2011


My not-really-wordless Wordless Wednesday:

20111228-110039.jpg

Howie: “I like you more than I like myself!”
Lewis: “I so PROUD of you!”

A moment in time during vacation week.

Oh, but if you feel like loving me
If you got the notion
I second that emotion
So, if you feel like giving me
a lifetime of devotion
I second that emotion
” – I Second That Emotion by Smokey Robinson

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

Somehow, we remembered.  It must be a Christmas miracle.

Last year, a few of my friends from my support group were talking about getting their kids’ pictures taken with Santa at the mall.  Or rather, not getting them.  The lines, the looks, the sensory overload…it was all too much for their kids.

I blurted out, “I wish we could have our own Santa somewhere so your kids could get their pictures with him without worry.”

We were quiet for a moment.  Then a friend said “My sister-in-law has a Santa suit.  We could do it.”

“Someone remember this for next year.” I said.

And somehow…we did.

**********

Five of us started talking, and the plan began to come together in mid-November.  Instead of our monthly support group meeting, we’d have a holiday party for our families instead.  We’d hold it at our local community house for free, have pizza and drinks, and bring in some crafts and toys for the kids to play with.

Low key.  Joyous and simple, my friend said.

And of course, Santa.

I recruited my friend’s husband to play the role of Jolly Saint Nick.  He’s amazing with kids and has known Howie since he was a toddler.  He’s not a special needs dad, but he’s a very special dad.  If anyone could play Santa for our kids, it would be him.

The RSVPs from our support group friends flooded in.  We were expecting 60 people.  Thirty-five kids.

I got a call that morning from one of the moms in our group.  She was coming with her crew – her husband, her 11 year old daughter, and her 7 year old son, who has autism. She thanked us a hundred times for this.  Her son had never seen Santa – it’s always been too hard to get him out to see him at the mall – and her daughter still believes and wants to see him too.

She said we’ve made “Christmas exciting for her family again.”

I almost burst into tears on the phone.

**********

The afternoon of the party came and I was a nervous wreck.  I only had to bring the Hot Wheels cars, the crafts, and make sure Santa was there on time.  For some reason, I felt like so much was riding on this.  We were promising our friends so much – the ability to play and eat and talk to Santa on their own terms.  Could we pull it off?

We could.

**********

Let me tell you something.  Our kids…they are something special.

They walked into that room and somehow they knew it was a safe space.

A place to just “be”.

They sat on the floor and played with cars.  They built with blocks and made snowman crafts.  They played with what they wanted to play with. Ate when and what they wanted to eat.

My friends' kids playing with Hot Wheels Trio Blocks (photo used with their permission)

There were no meltdowns.  No “interfering behaviors”.  No “non-compliance”.

They were themselves.

I made the big announcement that Santa was in the building at 6pm.  You could feel the kids’ excitement as he walked into the room.

We had a special spot for Santa to sit in the back of the room for photos.  Tim set up his camera equipment to get that special shot.  Santa gave the kids “high-fives” and we had a seat next to him for the kids to sit in.  Not on him.

Because…we know.

Santa took his place and the kids made their way over to him in their own way.  Some rushed over and got in line.  Some moseyed their way over, checking out the scene.  Some hung back, going over if they felt like it.

Santa on their own terms.

No one was more excited to see Santa than my own Howie.  My little Jewish boy jumped up and down when Santa walked in.  He pulled me down and whispered in my ear: “Is Santa real or fake?”

“What do you think?” I said, holding my breath.  I didn’t know if he recognized my friend in the suit.

“I think he’s real.” he whispered back.  Good enough for me.

"I would like a green hot wheels car!"

"Is there one in Santa's bag?"

Hurray! It's a Christmas miracle!

We had kids get their pictures taken with Santa who had never been able to be in the same room with him before.

As my friend said: “Community house? Free.  Pizzas? $10 each.  Our kids’ smiles? Priceless.”

(my friend's son, photo used with her permission)

Ringing Santa's bell so wishes come true (my friend's son, photo used with her permission)

First great photo with Santa (my friend's son, photo used with her permission)

First time with Santa (my friend's son, photo used with her permission)

and my personal favorite photo:

My son, giving Santa a high five. Minutes after he told Santa "I celebrate Hanukkah."

I wish I had the words to describe the joy in that room that night.  Let’s just say that the kids were all full of awesome.

That night, a few of us went out for drinks.  One of my friends said she’s never seen her daughter that happy.

“She could just…be.”

Exactly.

There was no stress for our kids to be something else.  They were surrounded by acceptance and understanding and pure unconditional love.

The way the holidays are supposed to be.

**********

I have Santa signed on for next year already.  This Jewish girl saw the magic of Christmas and I will never ever forget it.

The moon is right
The spirit’s up
We’re here tonight
And that’s enough

Simply having a wonderful Christmas time
Simply having a wonderful Christmas time ” – Wonderful Christmas Time by Paul McCartney

Eight nights.  Eight senses.  I’m at the SPD Blogger Network because Hanukkah starts tomorrow and we have a lot to do to get ready.

That includes a little sensory work.

Happy Hanukkah!

SPD Blogger Network Post

I Have A Little Dreidel

We’re coming up on the two year anniversary of my son’s autism diagnosis.

Since it’s the 17th of the month, I’m writing about it over at Hopeful Parents today.

Read why I’m just A Little Bit Stronger today than I was two years ago.

A Little Bit Stronger

My dear sweet boy.

I lingered a little longer tonight after you fell asleep.  Watching you so peacefully breathing.  Your body still.  Quiet.

My dear sweet boy.

When it is just us – just you and me – you are so present.  You look right at me.  Your big brown eyes twinkling when we talk.  Dancing when you laugh.

And then you leave me.  What happens when you leave me?

I don’t know how to fix it.  It’s a mother’s instinct to fix things.  To “kiss it better”.

When we are together, I can help you.  I navigate the bumpy waters. I am by your side.

I am three steps ahead of you, anticipating the next curve.  We keep each other even.  We avert the meltdowns, the aggression, the rage.

What happens when you walk out that door? 

I want to help you figure out how to adapt to the world around you.  But I so desperately want to help the world learn how to adapt to you.

What makes you so challenging when you leave my arms?

How can I make them see what I see?  I see the boy who jumps up and down beaming with pride when he gets an answer right.  I see the boy who laughs a contagious laugh at the funny jokes.  I see the boy who can light up the room with his smile.

The boy who just wants to please.

The boy who was so happy.

How do I show them the wonder that is you?

**********

“Do you wish you had my brain?”, my son asked.  “Do you wish you could think like I do?”

Yes.  I do.  I would do anything for just one moment to be you.

To feel what you feel.  To see what you see.  To think like you think.

Maybe then I could understand how to help you.

Maybe then I could fix it for you.

Maybe then I could “kiss it better.”

Like a mother should.

One of the wonders

People see me
I’m a challenge to your balance
I’m over your heads
How I confound you and astound you
To know I must be one of the wonders
Of God’s own creation
And as far as you can see you can offer me
No explanation ” – Wonder by Natalie Merchant

I was blown away.

The comments on my “Defying Gravity – The Giveaway” post were incredible.

Unforgettable.

As the entry in the Motorola Xoom giveaway, I asked readers to share their child’s “defying gravity” story – a moment when they exceeded expectations.

The moment when they were through “accepting limits, because someone said they’re so.”

And…wow.

Go back and read the comments on the post because what our kids have done is truly incredible.  And what they will continue to do will be even more spectacular.

Like the children who were told they would never walk who are now running.

Or the children who were told they would never talk who are now having conversations.  And singing.

Or the children who are pushing themselves to make friends, try new foods, ride bikes, fight bullies, stack blocks, draw pictures, go to the dentist, and advocate for themselves in school and in life.

All of you who shared your story – I am inspired by you as parents.

And your children are nothing short of heroes.  All of them.

Every single “defying gravity” moment is huge.  I get it.  We all do.

Evidence of that?  This comment from Molly:

Our children defy gravity in a million ways every day, because their own gravity is relative. This week, O started consistently trying to engage children in play in school. This didn’t always end well, for anyone, but we choose to focus on what we “will” do rather than what we were told we’d “never” do. And while, to most, our gravity is less…grave?…again, it is relative. Assess the gravity you face and defy it on your own, in your own way.

Assess the gravity you face and defy it on your own.  Exactly.

Click HERE to read all the comments on the post.

We could pick only one winner, chosen at random from all eligible comments by random.org.  The winner was Eric S, a dad to two sensational kids.  Congratulations to Eric and his family!

I wish I had Oprah money and could give a tablet to everyone who needed one.

I know that Motorola will be doing more giveaways, so I’ll post any that I see on my Facebook page.

Check out sites like Apps for Children with Special Needs (a4cwsn) for help in getting your child an iPad.  If you’re a military family, check out iPads 4 Military Families. Sites like Technology in (Spl) Education have information on apps by IEP goal and listings of free and discounted apps.  Ask your schools to apply for grants to get the tablets in the hands of our kids’ teachers.  And of course, be wary of anything that seems too good to be true.

I know the power of this technology as I have seen it in action not only in my own house, but in my friends’ houses as well.  I wish everyone could experience it.

Thank you again for sharing your stories with me.  This is an incredible community and I am proud to be a part of it.

I will remember this always.

Unforgettable
In every way,
And forever more
That’s how you’ll stay.  – Unforgettable by Nat King Cole

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