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Posts Tagged ‘diary of a mom’

Today is Brooke’s 11th birthday.

11.

When did that happen?

Yesterday we were blessed to have many of her friends and classmates over for a birthday party that included a planned surprise (check over on diary for the details), live animals (her favorite was the chinchilla), dancing, a piñata, pizza, cake and dough babies.  I think it is safe to say that everybody had a good time.

https://www.youtube.com/watch?v=8TlX7kyXlCY

But even in the midst of all this fun, I was reminded just how different Brooke is from many of her peers.  Watching her throughout the party I was able to see just how far she has come and just how far she still has to go.  I don’t mean in the “to be more like her peers” sense, but more in the “developing an ease with her environment” sense.

Anyway, I was reminded of Autism.

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Tomorrow is the first day of Autism Awareness Month.  It is a time that many of the big advocacy groups push awareness, fund raising, etc.  Undoubtedly there will be arguments and heated discussions between those who align themselves with the various groups.  As you may or may not know, for a very long time, Jess and I were supporters of Autism Speaks.  Over the course of many years, we walked their walks, we ran their races, we raised a lot of money for them.  Last November I ran my last race with them – the New York City Marathon.

Days later, Suzanne Wright would write those controversial words, essentially marginalizing autistic adults.  It’s her organization.  She can do with it what she sees fit.  Jess and I could no longer support them.  It wasn’t easy to walk away – in fact, I wrote about the first Charity Miles run I took post-speech…a sad, difficult day for me.

I moved on.

But here we are, on the eve of Autism Awareness Month.  I still get emails from Autism Speaks, urging me to “Light It Up Blue!” for awareness.  As much as I want to, I cannot.  I know that Autism Speaks does not own the color blue, but it seems that they have co-opted it and made it their own (along with the puzzle piece).

Autism Awareness Day is the day after tomorrow.  Many people I know and respect will light it up blue.

I cannot.

Instead, I ask you to consider another option.  The whole point of the “Light It Up Blue” campaign was to get people to ask, get people curious, get people aware.  How about instead of vaguely inviting people to ask questions about autism, we instead do so overtly.

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Autism

Awareness
Acceptance
Support

Love

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respect the stim

celebrate neurodiversity

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let’s talk about autism

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autism is one word,
but there is no one autism

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nonspeaking does not mean having nothing to say
question what you think  you know about autism

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These phrases are on T-shirts (click on each phrase to link to the shirt) that Jess designed in response to our older daughter asking what we should do for Autism Awareness Day now that we were no longer affiliated with Autism Speaks.  Initially we were stumped; wearing blue just didn’t seem right anymore – I have even retired the Blue Afro.  I don’t say this often enough about my wife, but I think she is brilliant.

I know that at the time of this posting it is essentially too late to get these shirts for Autism Awareness Day, but I hope you will consider not only purchasing one, but wearing it, not just for the month of April but all year round.  Autism awareness isn’t, shouldn’t be just a day or month out of the year; it should be 365 days a year.

***

As my baby girl turns 11, I ask you to help me…no, scratch that…help my Brooke make “awareness” more than just wearing a color or lighting a bulb…

Challenge your family, friends, acquaintances, yourself on what we know about autism…

Talk about autism…talk about the many autisms…

Help Brooke turn awareness into acceptance, support, respect of differences, but most importantly, love.

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So I was all set this morning to write about why I think I’ve been getting sick this winter, but instead this proud husband would like to share some pretty cool news about his pretty awesome wife.

This guy is now married to an official, genuine, actual Huffington Post Blogger!

After writing one of her best political pieces recently, Jess decided she would submit her post to Huff Po.  She had high hopes they would print it, but felt that it was probably a long shot.  Last night she got the news that her piece was live!

So proud of you, babe!

Check out the post by clicking —>>>HERE<<<—.

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Today I have my very first guest-blogger.  She is none other than my lovely wife, Jess.  I hesitate to let you read further only because she is a much better writer than I am.

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[tweetmeme source=”luau” only_single=false http://www.URL.com]

All right, so you can pick your jaws up off the floor now. Seriously, it’s impolite to stare.

I know how implausible it is to find me here. Me – of “I only run when being chased” fame. Me – who once announced to the world that I was going to run a half-marathon, got three weeks into Dante’s third ring of Hell training, decided for the millionth time that I DESPISED running, then spent the next six months trying to hide from anyone that had been within earshot when I’d made the declaration. Me – who would sooner chew glass than run, no less spend my time reading a blog about running (Sorry, honey, you know I love you, right?).

And yet, here I am. And I have a story to tell. And it’s about running. I know, what are the odds?

Here goes.

In another lifetime, when I was thinner and taller er, um, younger and richer oh, Hell, let’s just go with just out of college, I lived in Manhattan. Long before Luau and I met, and a good many years before I would become a running widow, I would periodically head over to the finish line of the New York City Marathon. Friends and I would go to share in the revelry of the day. We’d whoop it up and cheer in the runners as they ran along Central Park South. We made it our personal mission to help push them over the last hump as they neared the finish line in the park.

I loved being there and I always found that the energy and inspiration lingered long after I’d walked away.

One year, after cheering in God knows how many runners, I headed over to the West Side for dinner with a friend. We tucked into a window seat at a favorite restaurant and ordered a bottle of wine. We talked about everything under the sun. We chatted and laughed and watched the people go by. We ordered slowly and ate even more slowly. Why not? We were living in the days of nowhere to be. It was long after nine o’clock when we finally paid the check.

I headed out into the night, amazed at how dark it was. I walked across town, making my through the park and back down to Central Park South. I was changed by what I saw along the way.

A lone runner was making his way along the same path that had been lined with bodies hours earlier. Where there had been rows of fans five and six deep. there was now nothing but a few stray barricades still waiting to be collected. There was no fanfare now – no one screaming or urging him on – no one there waiting to hand him a banana or a mylar blanket. There was no one to put a medal around his neck, offer him a massage or even give him a handshake. There was nothing at all but him and the place where the finish line had been. It was nearly ten o’clock at night.

I stood in the dark watching him with tears streaming down my face.

One at a time, he pulled his forearm crutches around his body. At awkward angles, they kept time with his feet until he finally stopped to raise them above his head.

I felt like a voyeur. I didn’t say a word. I didn’t move. I just stood back in awe of the human will.

Finishing that race was for no one but him.

Running is intensely personal. Whether you’re obsessed with running a qualifying time for a marathon (ahem), looking to beat a personal record (ahem again), or just hoping to make it in before the course closes, unless you’re an elite runner, it’s for no one but you. Running for a cause or running against the clock; running two miles or running twenty six miles, if you’re really going to do it, it’s got to be for YOU.

If you’re running New York this weekend, I wish you luck and I wish you strength.

And while you’re there, if you start to falter, keep your feet moving toward the park. Because there, you might just find the spirit of the man who finished HIS race long after the spectators had gone home.

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Jess can be found at Diary of a Mom where she writes about our life, our beautiful daughters – nine and-a-half year-old Katie and seven and-a-half year-old, Brooke, and our up and down journey with autism.

She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit ‘Like’ and probably now wonder what they got themselves into.

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