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Posts Tagged ‘Autism Speaks’

21 Weeks – Boston 13.1 with Team Up with Autism Speaks

Posted in training, tagged , , , , on April 19, 2012| 2 Comments »

Some of you may still be waffling.  Some of you may be thinking, it’s too late.  Luau’s 26  24 week plan doesn’t work for me anymore.  If only there were a 21-week plan to get me to the finish line on September 16th, then, THEN I’d walk with Jess at the Boston 13.1 Team Up with Autism Speaks Half Marathon.  Well, your prayers have been answered.  I’ve modified the plan yet again.  It has a little bit of a steeper ramp up, but it should still be painless.

21 Week Plan <—HERE is the 21 week plan.  Just click on the blue link to download the printable PDF plan.  No excuses!  You start on today…or tomorrow!!!  Now go sign up —>HERE!!!<—

Below I’ve attached my post from 3 weeks ago regarding the start of Autism Awareness Month.

***

Tomorrow is April 1st.  It is the first day of Autism Awareness Month.

On Monday, World Autism Awareness Day, hundreds of landmarks and millions of homes, including our own, will be lit up blue.

I hope you will consider lighting it up blue with the rest of us.

Tomorrow will also be exactly 24 weeks before the Boston 13.1 Half Marathon.  I wrote about it a while back (I Want You) when Autism Speaks announced that it was teaming up with 13.1 to be the official charity of the Boston race.  Many of you signed up and we already have over 10% of the slots designated for Team Up with Autism Speaks filled.

***

If you are sitting on the couch reading this, thinking, I could never do a half-marathon, I want you to stop to reconsider.

Even if you have never run.

Even if you rarely walk.

This is something you can do.

And by signing up with Team Up with Autism Speaks, you are not only taking on the challenge of completing a half marathon (a tremendous personal feat in and of itself), you are taking a pro-active role in making the world a better, more compassionate place for my Brooke and those like her.

As we get closer to the date of the race, I will make another push for the more hard-core runners to join my cause, but today, the day before Autism Awareness Month starts; today, the day my Brooke turns 9 years old (HAPPY BIRTHDAY BROOKE!!!); today, I want to talk to those of you who have been looking for a reason to get off the couch, out from behind the desk, out of the sedentary life-style; especially if you are are the parent of, sibling of, child of, relative of or person with autism – this is a way to get active AND make a difference not only for yourself but for others as well.

***

Some of you may know the story of how I got into running a little over 3 years ago.  To be clear, I really disliked running, especially any distance over a couple of miles.  Over the years I had tried running on, but it never lasted more than a couple of weeks.  Three and a half years ago, Jess announced that she was going to run a half marathon…on the Cape…in the middle of February.

I thought she was nuts – she had never really run before.  I wasn’t going to let her run a half-marathon in the bitter, winter wind of the Cape alone, so I told her I would run with her.  As I began training, I remember thinking this really sucks.  Long story short, a couple of weeks later something just clicked – I had found the joy in running.

Meanwhile, Jess never did manage to get her training going.  I think a part of her problem was that she really had no guidance as to what to do.  I had no idea what I was doing so I was no help either (I didn’t discover the online running community until mid-summer).  She made an initial effort, but with no plan, the grand idea of running a half simply faded away.

***

Fast-Forward to about a month ago.  When Jess heard that Boston 13.1 would be open to walkers who could maintain a 16:00 per mile pace, a dream was reborn.

This time however, she had a few things working in her favor:

  • she wasn’t going to be running a half, instead tackling the distance as a walker
  • she would be training during the warmer month, so she wouldn’t have to brave the bitter cold
  • she knew a somewhat experienced runner to help put together a program for her that would ease her into the distance.

And so she started her program 2 weeks ago.  I put together a 26 week walking program that would slowly build up over 6 months to get her to the starting line with confidence and to the finish line without pain.  I drew upon several established programs for walkers and runners including C25K (Couch to 5K) and a modified Hal Higdon program.  The program can be used to walk or run a half-marathon.

***

I have further modified the program and compressed it to 24 weeks, meaning if you start tomorrow; if you get off the sofa and out of the house tomorrow, you could find yourself walking/jogging/running a half-marathon in September.  As big of a feat as it may seem (and is), it’s not as hard as you may think!

So I would like to encourage you to join me and Jess on September 16th at Suffolk Downs for the Boston 13.1 Half Marathon as part of the Team Up with Autism Speaks Team.  If you are an avid runner, you don’t need the motivation to get out there, but if you’ve been looking for a way to get active and make a difference, this is your chance.

Don’t think about it, because you’ll talk yourself out of it. Just do it. Click —>HERE<— to join the team and then click on the link below to get the 24 Week Walking Training Plan.

YOUR 24 Week Half Marathon Training Plan

You can do this!

AND if you are a Boston local, starting at the end of June, I will be organizing group runs/walks on the weekends leading up to the event along the scenic Boston Marathon course.  It will be a run/walk at your own pace kind of a thing, but we will start and finish together.  I hope you will join us.

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One

Posted in Uncategorized, tagged , , , , , , on April 2, 2012| 28 Comments »

Today is World Autism Awareness Day.  It is a day where landmarks and houses around the world Light It Up Blue to help spread awareness.  From the Americas to Europe, Asia to Africa you can find pictures of some of the greatest landmarks and government buildings being lit blue.

How can you contribute to this day?

By changing one solitary lightbulb in your house, apartment or even at your place of employment (ask the boss first) to a blue lightbulb.  They are easy to find – Autism Speaks has teamed up with Home Depot, who is selling inexpensive blue light bulbs.

You may wonder what changing one light bulb can do?

It could change the world.

Yeah, that’s right.  One light bulb could start one conversation which in turn could cause a ripple effect.  Autism Awareness is about breaking down the preconceived notions that people have about autism, and…

***

I started to write this post early this morning.  Inevitably, as is the case on a school day, I ran out of time – kids needed showers and breakfasts; lunches needed to be made; backpacks needed to be packed and the kids needed to be shuttled off to school.

Once at school, I realized that I had forgotten it was Literacy Morning – a short, 30 minute session in the classrooms where the kids show parents what and how they are learning about literacy.  I was going to have to split my time between Brooke’s and Katie’s classes, so I figured that I would hit Brooke’s class first while she was still focused.

Not all the kids had parents who were able to come, so Brooke was paired up with one of her good friends along with her (Brooke’s) one-to-one.  They were working off of a worksheet that would help them document different parts of a book or magazine – Title page, Table of Contents, Pictures, etc – and then allow them to answer some questions about those sections.

I sat down with them with anticipation…

***

From the …

When I…

Starting with the first question…

 

***

It’s been almost six years since the word “Autism” entered our home.   It’s been a long time since I sat at the edge of our bed at 3AM, silently crying, overwhelmed by Autism.  It’s been a long time since Autism has weighed heavily on my shoulders. It is always there, but I have learned to deal with it.  Brooke still uses her scripts, still has many difficulties, but we have watched her grow and utilize her tools as her tool box has grown.

It’s been a long time since Autism has slapped me in the face.

This morning Autism cold-cocked me in the teeth with a pair of brass knuckles.

From the start, Brooke couldn’t look at the worksheet.  Her eyes were everywhere EXCEPT the worksheet.  She couldn’t answer any questions, responding to every inquiry with either nonsense or rapid-fire scripting.  She hit me with one script and as soon as she realized that I wanted to her answer a question first, she’d hit me with another.

Bam. BAM! BAM!!!

I kept using the language I knew she understood – expected vs unexpected; full body listening; keeping the brain focused; engine running high.

There was nothing behind her eyes, almost no recognition of what I was saying.

I wanted to cry.

After 15 minutes, I had to go to Katie’s class.  She was waiting for me.

***

On the way down the hall, another parent who was splitting time like I was asked how it went.  I couldn’t answer.  I could only shake my head.

Upon arriving at Katie’s class, I found her patiently waiting to get started.  She very efficiently ran me through a 30 minutes project in just over 15 minutes.  It was a study in contrast.  I was so impressed with the way she compressed the time, but it was a stark reminder of  where I had been.

Again, I wanted to cry.

***

As I got into the car, Jess called to see how my morning went.  I tried to keep it together, but the floodgates finally opened.  I told her that today, on Autism Awareness Day I was coldly, brutally reminded that my baby has Autism and the tears…just…flowed.  Maybe there is poetry in that.

I thought about this unfinished post – how I had wanted to “rah! rah!” you into going down to your local Home Depot to buy some blue light bulbs – to convince you that you could make a difference by simply changing the color of you porch light.

I told my wife through tears that I felt like a fraud.

How were light bulbs going to keep Brooke focused when the pressure of school or work mounted?

I thought of the homeless lady in front of the church that Jess wrote about a few weeks ago.  I can guarantee you that to someone who didn’t know Brooke, some of the things that were coming out of her mouth today would have made that person think that maybe this little girl is beyond help.  I looked into the future and wondered how Brooke would ever be able to hold a job or even finish high school, much less college, if this is where she lands when the pressure builds.

Brooke didn’t present as angry or agitated this morning.  Everything was an overly silly, nonsensical response.  She was perfectly pleasant, but she wasn’t present.

What happens to her when she’s twenty or thirty or forty when there isn’t a one-to-one aide to help facilitate or explain?

What happens when she is fifty or sixty or seventy when I may be gone?  You want to know why I’m so obsessed with running and health?  Because I can’t die for a very, very long time.  I need to live to make sure Brooke doesn’t get lost in the shuffle.  Ignorant people will do ignorant things.

So what the Hell could one light bulb do???

***

Deep Breath…

What could one light bulb do?

I plan on being around for a long time.  I run, in part, because I plan on growing very old and being there for my kids.  The sad truth is though, that any number of things can happen to an individual – the best laid plans of mice and men and all…

I could be hit by a car tomorrow, or, according to quantum physics, simply dematerialize one day and disappear – the point is that you never know what the future holds.

What I do know is that if you put a blue light bulb in your porch light (or go nutty like us and put blue votive LED candles in every window), maybe someone will ask you why.  And if they ask you why, hopefully you will tell them what you know about autism and how it affects families and individuals.  Maybe that person will decide to put a blue light in their porch light and will continue the chain.

I would love to see a whole city-block – scratch that, I’d love to see a whole city lit up blue because someone told someone who told someone…

The truth is though, awareness is simply not enough.  If for whatever reason something were to happen to Jess and me, there is very little in place to prevent Brooke from becoming that homeless lady outside the church, babbling incoherently, generally ignored by the passing public.

That’s what I saw this morning, albeit briefly, during Literacy Morning.

I need – no, Brooke needs porches lit blue and awareness to be spread…but then she also needs services put in place.  As a society we need to understand that these kids and adults with autism, wherever they may be on the spectrum, are a part of our society, a part of our community.

Those supports should not be provided solely by a religious organization or a private institution, but rather by society itself, because in the end, we are one.

That is why I ask you to please just change one prominent light bulb in your house to blue for the month of April.

Just one.

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I Want You!

Posted in motivation, other, Uncategorized, tagged , , , , , , on February 14, 2012| 35 Comments »

Last Saturday I had the honor of attending the Boston Autism Speaks Walk Awards Dinner. It was an evening filled with inspiration and hope. While there I spent some time talking with Erica Giunta, head of the Massachusetts chapter of Autism Speaks. She was excited to tell me that Autism Speaks and the 13.1 Marathon Series had teamed up to make Autism Speaks the official charity of 13.1 Boston. For the September 16th event, Autism Speaks has pledged to field 400 half-marathoners. Each of those runners will commit to raising at least $500, meaning that we will raise at least $200,000 for research, advocacy and awareness programs.

This is where you come in.

I am NOT asking you to donate.

I am NOT asking you for money.

I want YOU!

YOU!!!

I want you to come cover 13.1 miles with me, where we will start at historical Suffolk Down race track and “dash through East Boston, Revere, and Winthrop, take in a stunning view of Downtown, and smell the salt air of the great Atlantic Ocean! The Boston 13.1 Marathon is (also) WALKER FRIENDLY. The course will remain open for 3 hours and 30 minutes (16 minute/mile pace).”

We are all touched by autism – whether it is ourselves, a family member, a neighbor or friend. If you haven’t been touched by autism, chances are you will – and soon.

I was inspired in listening to Autism Speaks President Mark Roithmayr Saturday night speak of a generation of children who are growing up with the understanding that kids like my little Brooke are “just one of the guys,”; of high school basketball and football players who were coming up to him simply to ask, “what can we do for so-and-so”; of college kids who were packing auditoriums to hear him speak on a Thursday night (I don’t know about your experience, but my Thursday nights in college were generally spent in the fraternity basement).

There is a generation of kids who are growing up with awareness, knowledge, compassion.

“Just one of the guys.”

It made me realize that there were in fact, many girls at Brooke’s school that really do just look at her as one of the girls. Yes, they know she’s different, but they just don’t care. They like her and she likes them. In fact, this morning at drop off, a girl that was in her class LAST year came up to her to give her a pink teddy bear for Valentine’s Day. Brooke hasn’t had a play day with this girl since last summer, yet this young lady thinks enough of Brooke that she felt compelled to give her a Valentine’s Day present.

This kind of awareness, this kind of comfort would, in part, not be possible were it not for the awareness efforts of organizations like Autism Speaks. In turn, organizations like Autism Speaks would not be successful were it not for the incredible efforts of you. Yes, YOU.

***

Whether you are an experienced marathoner, an avid walker or just a getting off of the couch, I would like to invite you to join the Team Up! with Autism Speaks Team. They make fund raising easy.

2012 Team Up! with Autism Speaks benefits include, but are not limited to:

  • Race Entry (which means you don’t need to worry about the $65 – $100 entry fee)
  • Team Up! with Autism Speaks Runners Tank or Long Sleeve, and an Autism Speaks dri-fit hat
  • Pre-Race private team dinner for you and a guest, location TBA
  • Customized fundraising page
  • Team Up! Facebook Page
  • Virtual Coaching by a certified running Coach Chris Fales
  • Fundraising Tips and Opportunities
  • Dedicated Autism Speaks staff
  • Race Day Cheering Section at Mile TBA
  • Race Day Team Up! Tent for pre and post race usage
  • Team Handbook- In a PDF form and downloadable for reference at anytime.

I will add one more “benefit” if you are a Boston local. If you will be running your first half-marathon at 13.1 Boston, or just need some inspiration to get out there, I will organize weekly weekend long runs in the weeks leading up to the event. 7 months is a long ways away; plenty of time to get yourself ready for what is sure to be a fun-filled, inspiring day.

If you are an out-of-towner, what better excuse to get yourself up here for a visit? You’ll get to see New England in the early Fall, you’ll get a great run in, you’ll raise funds for a worthy cause, and best of all, you’ll get to have dinner with me the night before the race…okay, well, maybe that last one is not such a great excuse. Regardless, whether you decide to dine with me or not, I want you here.

You love to or want to run/walk.

You want to help.

On September 16th you can do both.

Join me by registering join the Team Up! with Autism Speaks Team—>>>HERE<<<—.

Experienced runner, novice runner, walker or couch potato – I. Want. You!

If you cannot join me but would still like to help, please consider donating here --->>> http://events.autismspeaks.org/boston13.1marathon/runluaurun

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Once In A Blue Moon

Posted in New York City Marathon, Odd Ball, other, tagged , , , , , , , , on November 18, 2011| 11 Comments »

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

Some things, some opportunities only come around once in a lifetime – an opportunity to travel to a far off land; a chance to go all the way to South Africa to run Comrades; an intimate moment with J. Lo…oh, wait a minute, that’s fantasy, not opportunity. Sorry.

Anyway, as I was saying, sometimes the stars align just so to allow you to grab the bull by the horns and really, REALLY live.

One such opportunity presented itself this past weekend, allowing me to take advantage of the circumstances of my life.

As you may recall, about two months ago, I put it out there that if you put us over our fund raising goal for the Autism Speaks Walk, I would run my next marathon with blue hair.  You did.  On the day of the walk we found ourselves 1¢ over Jess’ stated goal.

One.

Frakking.

Penny.

But a promise is a promise and so because you fulfilled your end, I dutifully fulfilled mine.

If you are new to Run Luau Run or haven’t stopped by in a while, you can find the process of me Lighting It Up Blue and going from brunette to blond to blue—>HERE<—.

I then ran my blue haired marathon two weeks ago in New York and had both my slowest and most enjoyable run ever.  The video is —>HERE<— the race report —HERE<—.

The blue hair has been a lot of fun.  It has brought a lot of attention to autism awareness; it has made me easy to spot; it has definitely been a conversation starter.  It has served its purpose and run its course.  The blue has started to fade away and my roots have become more prominent (did I just say that? my roots? really?).

Could I go in for another touch up?

Sure.

But I would be ignoring the wise lesson I learned from Elmo when he told me the story of how he saved Christmas and almost lost it again – that having Christmas every day takes away from the true spirit of Christmas – instead, carry that spirit with you throughout the year.

And so it is with my blue hair.  A month of blue hair to spread awareness was a wonderful experience.  Now, it is time to carry that spirit with me (and you!) throughout the year.

***

Which brings me to this past weekend.  An opportunity, a chance to do something I always wanted to do as a kid and as a young man, but never could because of one reason or another…when am I going to again have longish, blue hair that needs to be taken down…

…and so I give you Goodbye Blue:

A nod to Movember:

Happy Movember!

But the wife wouldn’t let me into bed until I shaved off the ‘hawk and the ‘stache.

Clean Shaven

At least I have the pictures to prove it.  Thank you everyone for helping us raise the funds for our walk. I hope you will continue to “light it up blue” in spirit with me throughout the year.

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Why do you run?

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2 Birds, 1 Stone and a Couch

Posted in New York City Marathon, tagged , , , , on October 7, 2011| 10 Comments »

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

Thank you.

Thank you to all who helped push Jess over $10,000 in our fund raising efforts for the Autism Speaks Walk here in Boston. Due in part to your efforts, as a team we were able to raise nearly $30,000 in total.

As many of you know, I had promised that if Jess reached $10,000 raised by Walk Day, I would run my next marathon with Blue-dyed hair.  My next planned marathon was the Sugarloaf Marathon.  After reaching her goal, Jess asked when the marathon was going to take place, I told her May 2012.

Dead silence.

“What?” I asked her.

It’s too far away she would tell me.  She followed that up with saying that she had not mentioned in her donation requests the “marathon” part of my offer.

That was kinda the point I thought. 

Well, I guess they’re just gonna have to wait, I said.

Uh, no, was her reply.  Diary readers were expecting to see a blue-haired Luau and they were expecting to see it soon.

I thought on that for a while, trying to come up with a solution.  In the end, the only thing that seemed fair was to dye my hair now (the appointment has been made for next Thursday) and then dye it again in May for Sugarloaf.  I told myself it wouldn’t be so bad because I would be a beacon of Autism Awareness for a good 2 – 3 months depending on how long I kept the dye jobs.  It was like killing 1 Bird with 2 Stones.

***

BUT, something happened yesterday.  I won’t go into detail about it except to say that I will be donning my Team Up with Autism Speaks singlet again much sooner than I expected.  I will still run Sugarloaf in May – I believe it is my best shot in the Spring to re-qualify for Boston 2013. However, it appears as though I will be unexpectedly running the New York City Marathon again this year.

That’s right, I’ve got 30 days to train for New York.  This year however will be different than last.  Because I have not been in any kind of training mode for the last three months, I will be running for fun – no taking a shot at 3:15; no attempting a PR.  This is gonna be “let’s take a picture with every friend I can find along the way”!

The added bonus is that my hair will still be blue on November 6th, which means I will be able to run Sugarloaf with my normal hair color (if I decide to ever go back to it – maybe I’ll choose to stay blue) – 2 Birds, 1 Stone.

Unfortunately, because of family commitments, my weekend will be different as well.  I am going to slip into the City Saturday morning to pick up my number, and zip out to attend a family function that afternoon/evening, and then go back into the City that night.  There won’t be time to have a drink and catch up or break bread with friends I would love to see.

So, I’ve got a request – if you are going to be in the City watching the marathon, please let me know where you think you’ll be.  I’ll have my phone with me and will be live tweeting along the way (@luau).  I would be thrilled to stop, have a sweaty hug and take a picture with you along the way.  If you don’t Tweet, leave me a message on Facebook (Run Luau Run) or email me (runluaurun at gmail dot com).

Now, does anybody have a couch I could crash on that Saturday night?

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Dear Friends…

Posted in other, tagged , , , on September 21, 2011| 3 Comments »

Dear Friends,

As you know, last year I ran the New York City Marathon, wearing the Autism Speaks logo on my chest.  YOU got me there by helping me raise well over $3,500 before the race.  This year I have chosen to skip the marathon and focus solely on the Boston Walk for Autism.  There are several reasons for this (one being I can only run so many marathons before my legs give out), but suffice it to say that sometimes one must walk to be able to run again.

So why am I walking for Autism Speaks? Why am I asking you once again to help us meet our goals?  I could link you to a dozen blog posts both Jess and I have written about the scientific research that shows incredible promise, or how Autism Speaks continues to do incredible work in their Raising Awareness campaign, or I could tell you about a friend who was surprised at just how many people in her new school community didn’t know what autism was right here in our town, telling me that there is still a long way to go…

But for me, it always comes down to this ..

(and now I’m stealing my wife’s much more eloquent words)

To make a difference.

To ease the path for my girl and so many like her who struggle with autism’s challenges.

To help find answers.

To change lives.

That’s what I’m asking for today.

*

Because every child deserves the chance to push past the limits of his or her potential.

Because we ALL deserve a world in which these amazing people are full participants.

Because we still have so many more questions than answers. 

Because the answers change lives. 

Because given the right tools, there is nothing – NOTHING – that my baby can’t do. 

Because for the first time in my life, I have no choice but to ask for your help. 

Because we can’t do this alone. 

Please give what you can. 

Because every dollar makes a difference in the lives of children like mine. 

From the bottom of my heart,

Thank you.


I know these are tough times economically, so I ask you to give what you can, and if you can’t, and are so inclined, please pass this along.  The link below will take you to Jess’ fund raising page.  I’m asking you to donate to HER page and not mine because every dollar she raises will be matched by her company – EVERY DOLLAR! So for every dollar you donate to her, you are essentially helping us raise double that!

http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=467486&supid=331351221

If, for whatever reason, the link takes you to the Walk’s splash page and asks you to look up a walker, please enter:

FIRST NAME: Jess

LAST NAME: diaryofamom

The link can be a little wonky.

Finally, as added incentive, if we can hit her goal by Walk Day (October 2nd), I will do this for my next marathon (to me, not the dog – Dear PETA, this picture is photoshopped.  I did not dye my dog for real).

Thank you for your continuing support.  I am already in your debt.

-Luau

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Speech

Posted in other, tagged , , , , on July 28, 2011| 51 Comments »

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

“On behalf of every man
Looking out for every girl
You are the guide and the weight of the world
So fathers, be good to your daughters
Daughter will love like you do…”

-Daughters by John Mayer

Last night I had the privilege of speaking at the Greater Boston Autism Speaks Walk Kick Off Party. I have to admit that I was a little nervous, in part because anybody who had been to the Event a few years ago would remember Jess’ absolutely amazing, ovation-inducing keynote speech. I was asked how my worlds as a runner, a father and a person touched by autism interconnected. What follows is a video of my speech (thank you Jess for recording it), a transcript of the speech, and a few “thank you’s”. You can tell my public speaking skills are a little rusty (I hadn’t given a speech since my PTO President days), but I think I got my point across.

Good Evening.

Some of you may know me through my wife’s blog, A Diary of a Mom, as Luau.

I am a father of two beautiful girls, one of whom has autism.

I am also a believer that awareness is the key to understanding which in turn leads to acceptance – I firmly believe that if I can sit down with anyone and talk with them about autism and how it affects my little girl’s interactions with the world, I can erase one more disapproving face, one more thoughtless comment, one more snicker from the world – as parents, these are things we have all experienced at the playground or the grocery store or the mall.

Those “know-it-all” parents who look at you and say, “I would never let my child do that”. – They are a big part of why I do what I do.

But what is it that I do?

Well, I run.

And I write about running.

And you’re right – that should have nothing to do with autism; but as I am sure many of you know, when you have a child with autism, it becomes a part of everything you do.

When I write about running, I often find myself drawing parallels to the challenges, the trials & tribulations, and of course the victories of living with a child who has autism. As my audience has grown, so has the number of men and women who have now developed a sense of compassion for our families. I hope that as time goes by, more people like me, specifically dads who just aren’t sure how to make an impact, will find their own voice, their own way of contributing to the conversation, whether it be through running, talking to other parents while coaching Little League, or sitting around a poker table – ultimately raising awareness.

Now don’t get me wrong. Awareness, understanding and acceptance are not the goals – they are the vital first steps on the journey toward the goals. This is one of the many reasons why I work so hard to raise funds for Autism Speaks.

Autism Speaks understands that there isn’t just one solution to the challenges faced every day by people with autism and those who love them. And so while Autism Speaks works hard to raise awareness, they are also tirelessly working to unravel the mysteries of this epidemic using a reasoned, scientific approach, pushing for good, solid science to eventually answer the myriad and endless questions we have.

As men we are wired to “fix” things. As fathers we are wired to protect our children. This is our nature. But autism is neither something that can be fixed nor something we can protect our children from – instead it is messy, complicated, hard, frustrating. And so as fathers we lose faith in ourselves.

But I am here to tell you tonight, no matter how lost you may feel, no matter how overwhelmed by the process you may be, there IS a way that you can help, there IS a way that you can make an impact, not only for your child but for all of our children.

You walk. And as you talk to your friends sitting around the poker table, to the parents at the little league game, and to your co-workers about why you are walking, I bet you get to see judgement replaced by compassion and ignorance with understanding.

The first time I ran the Boston Marathon, my wife handed my an Autism Speaks pin to wear during the race. Her message was that if our little girl could fight each and every day to interact with the world around her, then dammit, I could drag my butt up Heartbreak Hill even with my legs failing me. And when they did – I put my right hand over my heart where I was wearing the pin – I made it past Heartbreak Hill and finished with a Personal Record of nearly 25 minutes.

I now wear this pin to every road race I participate in. This simple token does two things:

  1. It gives me strength when my legs start to tire.
  2. It starts a conversation and helps me pull more people into my community of understanding.

I run, I write, I talk, and I walk for Autism Speaks because to quote one of my newest heroes, Autism Speaks’ Chief Science Officer, Geri Dawson, I want “A world in which suffering because of autism no longer exists.”

Several weeks ago, I had the privilege of listening to Dr. Dawson speak about the latest scientific breakthroughs and ongoing research initiatives that are being funded by events like this. During her talk she gave me something I had been struggling to find in the preceding weeks. We were having a particularly hard time and had let our fears for our baby’s future grab hold of us. But on the night that Dr. Dawson spoke, she gave me, us, the gift of hope.

The hope that “A world in which suffering because of autism no longer exists.” is possible.

“A world in which suffering because of autism no longer exists”

That is not only Autism Speaks’ mission statement, but also mine – not just for the sake of this dad’s little girl, but for all of our loved ones who live with autism every day.

Thank you for being here. Thank you for listening. Thank you for helping to make the world a better place for my little girl.

***

I would like to thank Jess for helping me turn my crude rough draft into a polished piece; Kelley Borer for inviting me to speak (I was convinced she was asking the wrong member of our family at first); Autism Speaks for helping make the future brighter; Randy Price for continuing to be a fixture at every Kick Off event and walk; and last but certainly not least the amazing people of the Teamsters Local 25, who have raised nearly $1,000,000.00 for Autism Speaks – Sean, Trish and Tom, you are Heroes in my book.

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Quicksand and a Rope

Posted in motivation, other, Uncategorized, tagged , , , , on June 10, 2011| 18 Comments »

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

I am running – pounding the treadmill.

My demeanor is calm, almost stoic, but I am sinking.

Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.

I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.

My breathing becomes labored and yet, I am still calm, stone-faced and waiting.

When the endorphins finally kick in, it is almost anti-climactic.

Yes, I feel good.

Yes, there is some release of tension.

But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.

Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.

***

I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.

Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.

That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.

***

But then last night I was thrown a rope.

Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. R went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.

That is exactly how I felt.

It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.

Until last night.

What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.

***

And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.

Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.

Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here
Here comes the sun, here comes the sun
and I say it’s all right

-The Beatles


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This is the second time an Autism Speaks scientist has pulled me out of my funk. I had the pleasure of also seeing Dr. Tager-Flusburg again last night.

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Blue in New York

Posted in motivation, New York City Marathon, Odd Ball, racing, tagged , , , on October 12, 2010| 9 Comments »

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

Okay friends, New York is less than 4 weeks away.  When I first put it out there that I needed to raise $2600 to run the New York Marathon for Autism Speaks, you put me there in less than 4 weeks.  I was amazed and humbled how quickly my circle of friends rallied around to support this cause that is so very important to me.  I am extremely grateful.  For the last couple of months however, I’ve been stuck at a little over $3,000.  Nothing to sneeze at for sure, but I know I can do better.  So I’m throwing out a challenge.

If I can manage to raise $8,001 ($1 more than the goal of the fundraiser currently standing in 5th place among New York runners) before the Friday (11/5) I leave for New York, I will do this:

Yo! Wuzzup?

That’s right.  I will, for the first time in my life, dye my hair, and not only will I dye my hair, I will dye it Autism Speaks Blue.  Come on.  How many of you wanna see me walking around New York City with blue hair?

Here’s the link to my fund raising page —>HERE<—

Get me to $10K, and maybe I’ll even dye the dog!

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Walking Before Running

Posted in New York City Marathon, other, tagged , , , on September 20, 2010| 7 Comments »

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

Many of you know that I am running the 2010 ING New York City Marathon on November 7th. I will be able to do so because a great number of you helped me raise the required funds for Autism Speaks to get me there as a charity runner. Through your generosity I have raised over $3,000. I am deeply grateful. A few people however have asked me to remind them where to go to send donations. I would like to request that you send them to a new destination.

Before I run, I will walk.

Next Sunday, our little family will be participating in the Greater Boston Autism Speaks Walk at Suffolk Downs. I have to admit I have been hesitant in writing this post. After all that you did for my drive to run New York, I did not want you to feel that I was going back to the well too soon and too many times. That said, if you have already donated to my New York fundraiser, please know this post is not directed toward you (though please feel free). If you did not have a chance to donate to my run, but want to help, please consider donating here. It is our team’s fund raising page for this year’s walk. We are Team Umizoomi (my little Brookelet’s choice). Last year you helped us raise so much that I was allowed to throw out the first pitch at a Red Sox game – an opportunity of a lifetime.

Throwing out the first pitch on Autism Awareness Night at Fenway in 2009

I’m going to steal the wife’s letter from her page:

Because autism awareness is as important to my baby girl as any other tool we can give her.

Because she desperately needs acceptance, encouragement and understanding.

Because she deserves compassion and love.

Because with the right tools, there is nothing she can’t do.

Because 1 in 110 children is just too many.

Because no child should have to hurt.

Because there is nothing we wouldn’t do for our girl, but we can’t do this alone.

Please, donate whatever you can. Join our team. Walk with us here in Boston or join us in raising funds and walking virtually from wherever you are.

Because together, we CAN and we WILL make a better world for people with autism.

On behalf of my family and so many others like us, thank you. From the bottom of our hearts. We couldn’t do this without you.


My Little Super Brooke

Once again, if you have already given, please don’t feel like I am coming back to you, but maybe you could pass this post along. But if you haven’t donated yet, please consider giving to, joining and walking with (virtually or IRL) Team Umizoomi.

The link is —>HERE<— or click on the picture of Super Brooke!

Thank You,

Luau

PS – just let me know if you do, that way I can thank you properly!

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