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Archive for November, 2012

Time Machine

As a runner, I think about time – like, a lot.  How fast was that last mile?  How much time did that race take?  How much time do I have for today’s run?  What were my splits?  What did I average?

Time.  It’s on my mind all the…well…time.

But I’ve been thinking about time in a different way recently – as in, I wish I could go back in time.

We all have things we wished we had done differently when we were younger – the girl who got away; the trip we didn’t take; the job we declined.  I’ve got a bunch of them, but to be honest they are all silly and childlike save one – I wish I had been paying more attention to Brooke when she was a baby.

Now, understand, it’s not like Brooke is in a bad place right now.  Truth is, she’s been doing pretty well – her language gets more and more complex; she’s expressing how she feels; she’s getting more independent.  She even as a pair of sisters fighting over whose friend she is.  Brooke is in a pretty good place right now.  In general, she is happy.

But at the same time, I can’t help but notice the widening gap between her and her peers.  More and more her home-school communication journal mentions fewer and fewer friends she plays with.  As the girls her age have grown, I’ve seen fewer and fewer invitations to play dates – there have even been a few parents that just flat-out ignored any attempts on Brooke’s and my attempt to set something up.  And birthday parties?  Those are becoming rare as well – a natural progression to be sure; when Katie was Brooke’s age, she decided that she wanted to have smaller, more personal parties.  I get it.  But it’s still difficult to see the pictures on Facebook and the mentions of parties, knowing that she was not invited.  It’s not a “wah” moment, just an observation.

What scares me the most is the impending move to Middle School in a year and a half.  Will Brooke move on with her peers? or will she end up at a different Middle School with a special program for kids on the Spectrum?  These girls may not be calling for play dates and birthday invites, but they know her; they get her; they’re cool with her.

Would that I could go back in time to when Brooke was a baby.  Would there be anything I could have done?  Would that I had listened, really listened to Jess when she first felt something might be different.  Would Brooke be in a different place right now?

How could I have not noticed?  If I had, would she be different?  I know it’s not PC to wish the autism away, and you know, it’s not the autism per se that I would wish away – it’s the difficulties that Brooke faces every day that I wish I could change.  Brooke has autism, and no matter what I noticed or did six or seven or eight years ago wouldn’t change that – I just wonder if I had noticed earlier; if I had paid more attention; if I had gotten her the help she needed earlier…would it be different?

I wish I had a time machine so I could find out.

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So yesterday we found out the results to the biggest contest of 2012:

#teamLuau had defeated #teamBecca by a resounding 40 Charity Miles

…well, a closer look at the numbers revealed that maybe the victory was not as resounding as one might think – 604 miles to 564 miles – 51.7% to 48.3%

Hmmm…maybe not such a mandate after all.

***

And so, in the spirit of cooperation and bipartisanship, #teamLuau would like to show the winners and losers of that other contest that was held yesterday how it is done.

Instead of gloating about our victory and making gorilla noises at #teamBecca, #teamLuau would like to offer to split the miles Becca has to run in a gorilla suit – we will take on 20 of those miles.  Obviously logistics (how do we transport the gorilla suit? when? where?) have to be worked out, but one way or the other, we will work together and get this thing done, because in the end, it was never about #teamLuau OR #teamBecca.

It was about you.

It was about you and those whom you love; it was about the children and adults who struggle with autism on a daily basis; it was about doing our small part in making the world a better, more hospitable place for anyone who has ever felt different from others.

Hopefully OUR cooperation can show those guys in Washington that together is always stronger than divided.

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This just in from Charity Miles HQ – The Results Are In:

#TeamLuau vs. #TeamBecca

Election Results Are In!!

Dear Team Charity Miles,

As many of you know, we’ve been in the throes of an intense election. Last month, Autism Speaks’ Becca Barnes challenged Team Up Captain Luau to see who could run the most Charity Miles for Autism Speaks in the month of October.

I added a little twist by allowing anyone to tweet-add their miles to #TeamBecca’s or #TeamLuau’s totals. And Becca added a little flare: The loser has to run the difference wearing a gorilla suit, Autism Speaks jersey and blue afro wig. 

After the first week of campaigning, #TeamBecca had 221 miles– a comfortable 29 mile lead over #TeamLuau.

But, with one week left to go in the challenge, #TeamLuau came roaring back, bringing him up to 446 miles– a 4 mile lead over #TeamBecca.

It was neck & neck into the homestretch… But The People have spoken! #TeamLuau finished with 604 miles, beating #TeamBecca by 40 miles!

Ouch! 40 miles is a long way to run in a gorilla suit! I might have to go down to Florida to help her out. Anyone else with me? After all #ChangingTheWorld is a team sport!

Speaking of elections, we’d like to remind you to get out and vote today. Even better, vote with your feet by walking some Charity Miles to your voting center. Tweet us that you voted and you could win the T-Shirt below. #WalkTheVote!

All the best,
Gene

***

I want to thank #teamLuau for your incredibly hard work and extend my best to #teamBecca for a hard fought, positive campaign. And a special thanks to Gene at Charity Miles for making this all happen!  In the end, everybody wins!!!  I hope that you go out today and vote – whether you are right or left, red or blue, what matters most is making your voice heard!

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There was so much more that I didn’t document while I was out there running my unofficial New York City Marathon…hopefully I will get around to it sometime soon, but in the meantime, this was my iPhone’s experience today!

all photos (except for Staten Island shots – which were downloaded), videos, notes and editing done on the iPhone – thank you Steve Jobs.

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So after yesterday’s post, which I wrote hours before the Mayor cancelled the marathon, many of you commented both here, on Facebook and on Twitter that I would have a whole year now to get Katy Perry’s attention for a donation of wigs.  I have to be honest with you, because I didn’t want to put anyone in an uncomfortable situation, I didn’t tell you the whole truth yesterday.  My struggle with deferment was much greater than a “should I or shouldn’t I run”.

I went to bed on Thursday night pretty much having decided that in the morning I would write to Lara, our amazing Team Up with Autism Speaks coordinator, and let her know I was deferring until 2013.  What I had seen on TV and heard from friends was simply horrifying and I could not see myself running when so many needed assistance.

I woke up at 5AM and instinctively reached for my phone.  I still had another half hour to sleep, but I notice the email alert said I had several emails that had arrived around 3AM.  This is what one of them (from one of Katy’s assistants) said:

Katy would be happy to make a donation of 25 wigs.

My new friend Andrew (Katy’s friend who I had been working with) sent this email:

Just got this email from one of the peeps at Katy’s management!

Which was followed by an email from Gene over at Charity Miles (he knows Andrew and is in the loop):

HOLY COW! THIS IS AMAZING!

I was ecstatic!  It had worked.

Katy Perry was donating 25 wigs!!!

As Gene said, how amazing was that???

Suddenly, I was back in it.  I was going to run New York!

But then reality started to hit me.  The fact that Katy Perry was generously donating 25 wigs to the cause did not change the fact that people in the City and surrounding areas were suffering.  I went back and forth all day, finally coming to the decision that I did.  Fortunately, the mayor finally called the event, taking a huge weight off of my shoulders.  I didn’t mention the wigs in yesterday’s post because I wanted to make sure that it was okay that I did – after all that they did, Katy and Andrew deserved the option of deciding whether or not to be mentioned.

I want to thank Katy and Andrew publicly.  Although the marathon was cancelled, at the very least, the wigs will be waiting for us for the 2013 New York City Marathon – all of you who volunteered to wear one this year have my gratitude and the right of first refusal for next year.

Thank you Andrew.

Thank you Katy.

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To run or not to run…

That is the question I have been grappling with over the last couple of days.

To be honest, even in the midst of Sandy, I was dead set on running New York this year.  So many factors came into play, not least of which was YOUR donations that put me over my fund raising goal in less than 3 weeks forcing me to wear a Katy Perry wig for the marathon.  How could I NOT hold up my end of the deal?  I was running, come Hell or high water…except the high water came…and it devastated parts of Staten Island, Manhattan and New Jersey, along with other parts of the Tri-State area.

Even as of Wednesday, I had no doubt I would be running the New York City Marathon this Sunday, pacing my girl Jersey to a sub-5:00 marathon with my blue wig from iParty; but as I’ve watched the coverage on TV and followed the posts and comments online, my determination has wavered.

The debate is passionate – on both sides.  Run the race. Cancel the race.  Postpone the race.  All valid opinions.  All of them.

My plan was to take the train down this evening, stay at my cousin’s tonight and tomorrow night, run the race on Sunday and then head home.  As of last night, the trains weren’t running, my cousin had no power, and because of the lack of ferry service, the bus traffic was going to be even more congested on race day.

There is no right answer when it comes to holding this marathon, there really isn’t.  Wait…no, let me re-phrase that – there are too many right answers when it comes to holding this year’s marathon.

$350 million could go a long way toward helping speed recovery in those areas of New York and New Jersey most devastated.  In addition, the NYRR is donating $26.20 for every runner that starts the race – that could quite possibly be an additional million dollars to help the City and surrounding area.

But then there’s the massive manpower needed to run an event like this.  The mayor has said that running the race will not take away from disaster relief, but that just sounds like wishful thinking to me.  One man watching over marathoners is one man who is not out there helping those in need, and with another storm approaching, the urgency to get people at least settled reaches a higher pitch.

Several people have approached me about my wearing of the wig – that it may be an added target to those angry spectators that may decide to cross the line.  If I were single and childless, I would laugh such suggestions off, in part because I know that even after 20 miles of running, I can outrun 80% of the population…but I can’t outrun projectiles…and I’m not single or childless.

Just as I gave up ever trying skydiving and bungee jumping the day I became a parent, I can’t put myself recklessly in harm’s way – I’ve been reading the comments online…they ain’t pretty.  In addition, despite the fact that the wig I picked up at iParty is for a charitable cause, I would completely understand if my appearance was taken as a sign disrespect to those affected by the storm.

Too many people are hurting.  I do think that the race should have been postponed or cancelled, but I also feel I owe a debt to all those that donated to the cause – I think that every charity runner is feeling that pressure.

So it is with a heavy heart that I am choosing to defer my entry into the New York City Marathon until 2013.

I wish all those who choose to run the very best; may the day treat you well.  I ask the runners to show residents their deserved respect, being mindful of what those in New York and New Jersey, particularly those on Staten Island, have been through.  I ask that those who disagree with those who choose to run take it out not on the runners but voice their opinions to the NYRR and the mayor.

I’ll be back next year…with my wig.

That’s a promise.

***

I want to thank Lara Collazo for all of the incredible work she is doing for the cause.  She is the organizer of all Team Up events and has been tirelessly working with Team Up runners to make sure they get what they need when they need it.  I also want to apologize to her publicly for choosing to defer so late in the game, especially in the midst of all she is doing. 

AutismCares is actively seeking families affected by autism who are victims of Hurricane Sandy and invites those families to call the Autism Response Team at 1-888-Autism2 (288-4762), En Español at 888-772-9050, or email autismcares@autismspeaks.org to receive assistance. Families may also register directly at www.autismcares.org. Please pass the info on to anyone who might need help.

Another option if you would like to help is http://www.huffingtonpost.com/gene-gurkoff/charity-miles_b_2065234.html .  Long story short, Gene over at Charity Miles will be making a special donation to relief efforts for every person that runs 26.2 charity miles this weekend.  How awesome is he?  Please check it out.

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