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

Last week I awoke one day to a message on Facebook from my friend Sue.  She had sent me a link to this —>

, saying she thought of me when she first saw it.  Little did I know that Jess had posted that same video on her blog just the day before.  I urge you to watch it, but I warn you, have some tissues ready.  After initially seeing it, and wiping away many tears, I sent a “thank you” to Sue.

The next day I got a note from my friend Logan.  He was speaking on a podcast called Geeks in Running Shoes previewing a presentation he was going to give to a group from Google on the nexus of running and social media.  During the podcast he spoke of reading this blog and how it completely changed the way he sees autism – or more to point, that he now SEES autism and is less inclined to judge a family and their “misbehaving” child.

Later I received a response from Sue.  She told me that she and her family had done the Autism Walk in her hometown due in large part to the regular posts both Jess and I put up on our respective blogs.

Each of those things, the video by Lou, the presentation by Logan and Sue’s initial thought of me and response would have individually made me feel pretty inspired, but it was the rapid fire impact of those three that hit me like a Mack Truck of Good Feelings.

Suddenly my brain was in high gear, jumping from one project to another that has fallen by the wayside over the last year or two – the books I want to write (one about running, the other completely unrelated), the motivational tools I want to produce – I became even more motivated in fund raising for Autism Speaks and the spreading of the message of awareness.

But the biggest impact was on my desire to run.  It is no secret that I have been struggling to find my mojo since May.  My runs have been uninspired at best.  This past weekend I ran on both Saturday and Sunday for the first time in a long while.  I went back to basics on Saturday, pulling out my old Vibram Treks and did a nice little 5-miler into town and back.  My calves were almost immediately in pain when I got home, but I LOVED it!  On Sunday, I put on the more traditional shoes and went out  just to “run for fun”.  Shortly into my run I came across an entrance to a trail, shrugged my shoulders and went for my first trail run.

What fun!  The only downside, if there was one, was that I ended up getting lost, ending up at the same bridge over a sea of 4 foot tall grass three times before I finally figured out how to get out of the woods.  My only real worry was the 93° heat, otherwise, in the wise words of my friend Lisa (@runlikeacoyote – you should follow her if you are on twitter), it really wasn’t getting lost, it was just exploring.

Bottom line is this – I am pumped, full of energy and raring to go (though I did come to the conclusion that I am in no way ready to take the plunge on a 50-mile run through the mountains of Vermont – especially if it’s 93frickin’°!!!). Still, I feel good – terribly sore, but good!  My calves really hate me right now, but it’s good.

I’m looking forward to putting words to paper (already 1200 words in), I’m re-thinking my “why we run” project, I am setting up an appointment with a graphics designer, I’m looking forward to this October’s Autism Walk with Autism Speaks, and I have renewed motivation for spreading awareness.

AND running is fun again.

How incredible is it that one can spend months trying to find their mojo only to have it reappear thanks to three apparently unconnected, yet intricately related people.

Thank you Lou for your vision, thank you Logan for opening yourself up to awareness and passing it on, and thank you Sue for your open heart, your kindness and inspiration.

Finally, for all those who have seen Lou’s video, here’s his thank you to you.

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Why do you run?

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

When I tell people about running marathons, almost universally the response I get is, “I could never do that”.  My answer always is that just about anyone can run a marathon.  All you have to do is try, let go of preconceived notions about yourself and try on my running shoes.  Spend a week, a month, a year in my running shoes, widen your perspective and you will be hooked.  Just because you don’t understand it or don’t get it doesn’t mean it’s bad or not for you.

***

Reading through a friend’s facebook feed the other day I came across a post regarding the movie The Change Up.  There is a movement among some to boycott the movie because one character refers to another’s twin boy by asking if they are retarded.  When the father responds no, the friend asks, “are you sure, this one looks a bit downsy.”

I’m not going to go into the fact that the humor is on the offensive side of the fence and, in my humble opinion, unimaginative.  Anybody who reads this blog or my wife’s blog regularly knows where we stand on the word “retarded” and its use as either humor or insult.  The same goes for using those with Down’s Syndrome in a similar manner.

What got to me was the response of a particular fellow who snapped back at my friend with the following comments:

Isn’t this taking political correctness to an extreme? What would be acceptable, “what, are they hindered? Are you sure[?] this one looks a little suppressed”. Then after a month we couldnt [sic] use the H word right? cut the shit.

Somebody responded:

wow… cut the shit? tell you what, let’s make YOUR kid ‘retarded’ for a week. after, you can let me know how you feel about the world using him/her as a laughing point, k? better yet- why don’t YOU cut the shit. *disgusted*

To which he said:

First of all, I’ve done more direct volunteer work with “Retarded” children and adults in my lifetime than you could do in three lifetimes. I’ve done so since I was a child with my Mother. so that alone gives me my right to an opinion. I personally worked every Pat’s home game for two seasons at a concession stand at Gillette with every penny going to down syndrome. My point is it’s one thing to say directly a person with down syndrome “what are you retarded?’ that’s ignorant. But to reference the condition as Retarded or “downsey”. Is harmless in my eyes. there is a difference between “Special needs” and Down syndrome or retarded. Retarded is a gentle dictionary term for someone who is hindered from functioning in the same capacity as someone who is not “Retarded. Retarded WAS the kinder and gentler term as opposed to Mongoloid or even as they were scientifically referred to in the 1920 as idiots. I’m just tired of all this cock and bull false sensitivity you tree huggers throw out there to make you feel better about your own pitiful lives and I wonder when enough is enough.

As for those of you who have been blessed with a special child, you know as well as i do, your lucky ones and god’s chosen ones. You should also know that any of those children only want to be treated like anyone else. that’s includes joking teasing and loving. they don’t need to be shielded and understand more than most would give them credit. [To another commenter], I’d take a walk in your shoes any day and love it. My contribution was not years ago, it’s been off and on my whole life. I thoroughly enjoyed watching people look at me in horror being my usual “off color” self with my buddies and then laughing their collective asses off when they would all conspire to pelt me Mozzerella cheese balls from the pizzas we were making at Gillette. And guess who got all the hugs at the end of the day. that’s right this guy. I’m just saying lighten the fuck up. being ignorant does not make you a bad person, it just makes you ignorant. One without knowledge. You don’t have to change the fucking words, change some minds. Do you think your going to reach someone by scolding them for using the only words for it they know?

Educate. Don’t further isolate your kids by Trying to make others feel bad when I’m sure their intention weren’t. This society is over sensitized and overly pussified.
Next thing you know we will be electing a Special Needs president to compensate for our years of ignorance.
(yes i know that one was bad. I just had to get an Obama dig in here)

This was my response:

I think you are melding two issues. I agree with you that this Nation has become weak due in large part to this “everybody wins” attitude. If everybody wins all the time, nobody wins…however, we’re talking in part about a group of people who to a large degree cannot defend themselves, and when you are talking about certain subsets of that community, parents who are also unable to deftly defend their children. I am ALL for good natured teasing…particularly about things we can change, but let’s not make fun of a person because they were born with an extra chromosome or have a brain disorder…it just ain’t funny…

flatulence…now that’s funny!

So here’s the thing.  This guy firmly believes what he is saying (writing) – he really believes that he has done “more direct volunteer work with ‘Retarded’ children and adult in [his] lifetime than [the respondent – a parent of a Special Needs Child] could do in three lifetimes.”  He really believes that we [special needs parents] are all tree huggers who throw out “cock and bull” to make ourselves feel better about our own pitiful lives, and yet turns around to say that those of you who have been blessed with a special child, you know as well as i do, your lucky ones and god’s chosen ones.”  For him to then say “You should also know that any of those children only want to be treated like anyone else. that’s includes joking teasing and loving. they don’t need to be shielded and understand more than most would give them credit.” just goes to show that he doesn’t understand that sure we all want to be teased a little, but only if we are able to dish it back.  Teasing is good when it is a back and forth, not a one way street.

This guy here, this guy is why I continue to work for awareness, why I continue to run with my Autism Speaks pin, why I sometimes tell people that until you have walked in the shoes of a Special Needs parent, you cannot know what it is that they go through, what it is that pains them, what it is that scares the living daylights out of them and keeps them up all night.

The commenter said that he would walk in my friend’s “shoes any day and would love it.”  How about walking in the shoes of a parent whose kids have been wiping their shit on the wall for the past 18 years?  Tell me you’ll love it then.  Obviously he doesn’t get it.  I hope someday he may take a walk in our shoes, not just for the workday, not just for 24 hours, not just for a week.  I hope that he is given the opportunity to truly understand what it is we go through on a LIFETIME basis.  There is no end of the week, month or year for us.

Do I think we need to lighten up sometimes? Sure.  Sometimes we get trapped in our own storms and cannot find our way out.  Do we need to be able to laugh at ourselves? Absolutely.  Do our kids (and adult like them) need to learn to do the same?  Totally.

But there has to be a better way to do that instead of making these kids punchlines that will carry far beyond the movie theater.  What the commenter fails to understand is that once people see that it is acceptable to make a joke about “retarded and downsey” people in the theater, they will take it with them to their workplace, their playground, their community, at which point what was originally meant as harmless humor (and I don’t doubt that the writers of the screenplay meant it as harmless) ends up getting used in spiteful, mean-spirited, cruel ways that can cause much greater long term harm.

Honestly, I may still go see the movie.  Tropic Thunder had a similar issue, and quite honestly, that moment aside, I thought it was hilarious.  I just hope that people will think twice about laughing at the expense of someone for just being.  Laugh at the funny faces runners make at the end of a race, laugh at the fact that I almost pooped my pants in my last marathon, laugh at someone’s politics, be comfortable enough to laugh at yourself (said the skinny kid with the huge melon – yeah, that’s me).  Heck, laugh at public figures for saying ridiculous things, but don’t make fun of our kids just because they have autism or down’s syndrome or any other debilitating disease.

Quite frankly, that’s lazy and weak.  Maybe the commenter will be “blessed with a special child [and find that he is one of the] lucky ones and god’s chosen ones.”  I wonder if he will still feel that way when 10 years later he still hasn’t heard his child speak a single word, or a simple “I love you” or received a single hug.

Truth be told, I hope for his sake, and for the sake of that child, he doesn’t – I don’t think he has the feet to fill our shoes.

***

By the way, there is a tree hugger in our family.  It is little Brooke, who literally goes up to trees and hugs them.

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[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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Why do you run?

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

Do you enjoy your running?

your swimming?

your couch potato time?

those GIFTS, those JOYS, those FREEDOMS are afforded to us by the members of our military and their families – it is time to return the favor and help those that do so much to help us.

Follow the link below, leave a comment (there, not here) and then take 2 minutes to show your support and then pass it on…

http://www.hopefulparents.org/blog/2011/7/17/personal.html

***

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Why do you run?

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On Sunday I went out for what was supposed to be a 17 – 18 mile run.  Aside from 2 factors, it ended up being one of the best runs I’ve had in recent memory.

Factor One: I took a wrong turn mid-run that brought me back close to home a mile or two early.  As I approached home, I realized that I was only going to have a little over 16 miles done.  I thought about continuing on, but honestly, the gravity of a hot cup of coffee was simply too great.

Factor Two: I saw a young mom futzing with her little one’s seat belt on her jogging stroller.  She was making funny baby talk along with lines like, “are you going to be a runner just like mommy?  maybe even a lawyer too?”

Factor one I am sure many of you can relate to, but factor two?  I think that needs a little explanation.

Initially when I ran by Running Lawyer Mom, I smiled as I heard her baby voice and her baby talk.  It was full of love and hope.  The words came straight from her heart.  Her voice, despite being in that annoying tone we parents sometimes use with little ones, was full of warmth, wrapping her baby in a caress of anticipation.

As I went through these thoughts I continued to smile.  I could feel the warmth in me.

But just as quickly as I ran by her (I was clipping along at the time at around 7:15/mile) my smile turned upside down and my joy in seeing this young mother turned to sadness.

You see, I remember those moments.  I remember saying stuff like that to Brooke.  Back before she could walk or talk, I remember planning her life, right down to the job and city she would settle down in; the number of children; everything.  I had no idea what was just a year or two away.

We as parents know that nothing ever turns out as planned.  For most of us that means our children may choose a different educational path or career path or marriage path, but we know they will get there.  But for some of us, that path – that future – is much murkier than the slightly out of focus one we see for our neuro-typical children.  For those of us with kids on the autism spectrum, the future is…scary.

***

I stopped writing this post at this point – in part because I wasn’t sure where I was going with it, in part because it was time to head out for dinner before going to see the July 4th fireworks.

***

Going out to dinner with a child on the autism spectrum can be, um, difficult.  With Brooke there are a gazillion factors that can tweak her just enough to send a meal into a tailspin.  Last night, as we sat at our table, Jess and I physically winced every time a baby would cry out or a toddler would cry out for his mama or the waiting line (we were sitting right next to the entrance) got a little too close.  We eyed Brooke every time, knowing that each of those factors was pushing her closer to the edge.  I could see her face starting to contort.  The games on my iPhone provided only a little relief.  This evening was looking to potentially go down the crapper in flames.

But then something happened.  Katie started playing hangman with Jess and someone took notice.  After a moment, Brooke decided she wanted to play too.  Thankfully Katie thought that was a great idea and the two of them began to play.

My two little girls were playing hangman together!  Laughing at the words Brooke picked (Snelly and Poop and Katie).  Laughing TOGETHER!

I know that for some of my friends with neuro-typical kids, this may not seem like much, they are 10 and 8 after all.  But this was huge.  This was the first time they had played hangman together (in fact, as far as I know, this was the first time Brooke had played hangman…ever!).  Brooke then followed it up by working away at the word search in the children’s menu.  Despite a few speed bumps between dinner and the fireworks, she then made it through the display in spectacular fashion, laying with Jess on the grass, enjoying the show.

***

As we drove home, I thought of this post and what I had written.  Brooke’s future is still cloudier than most. Jess and I are determined to keep her pointed in the direction of progress, but the path remains unclear.  Just like any parents, we worry.

But you know what? My little girl played hangman with her sister last night.  And she enjoyed it.  And she played it the way it was supposed to be played.

The path may be hard to see, but the light shining on right now just got a little brighter.

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Why do you run?

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I Wish

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After my run this morning, like any obsessed runner I went over to the computer, before showering, to upload my run data.  As my stats wirelessly uploaded from my new toy (the Garmin 610), I manually entered my run into dailymile and then meandered over to Facebook to see what my far-flung friends were up to.  I can across some pictures of a dear friend who had recently taken a trip with her family to North Carolina.  Though we have not seen each other in what has to be over a decade, I have always felt a certain closeness to her and her husband.  Simply put, they are good people.

As I scanned through her album, I got lost in the joy and apparent ease their children and her husband’s brother’s children had with each other.  It seemed so…easy.  I have to admit that there is a part of me that is jealous of what they have.

Don’t get me wrong, I wouldn’t trade Brooke for anything, and quite honestly, if someone walked up to me right now and offered me a pill that would “cure” her autism, I’m not sure what it is I would do.  That being said, I wish it was easier for her.  I wish that social interaction and connection were not something that she just doesn’t quite get.  I wish that Katie didn’t have to feel embarrassed when Brooke made awkward social bids.  I wish that I didn’t have the mindset that I have to anticipate some of those awkward bids and feel the need to cut them off at the pass.  I wish, I wish, I wish…

Everybody has issues.  Everybody has problems.  I listen to the local moms complain about this and that.  Some of them feel silly to me, but the truth is, their problems are real to them.  Everybody has issues.  Everybody has problems.

Ours are just different.

I just sometimes wish they weren’t.


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[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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[tweetmeme source=”luau” only_single=false http://www.URL.com%5D

As I slipped into the pool this morning to try to implement my new effort to incorporate a complement to my running, I was momentarily distracted by the cheery singing of “ring around the rosy”. I looked up to see a group swim lesson going on with parents and toddlers. I smiled at the joy on the parents faces and the playful laughs of the little ones.

And then I cried a little.

As we come to the end of Autism Awareness Month, I can’t help but wonder, how much further along would Brooke be had I just been more aware when she was that age. Watching those parents and their children brought me back to swim lessons with Brooke. Swims lessons that were fraught with anxiety, screaming and crying. There was no joy, there were no playful laughs.

It was the beginning of an 18 month stretch where Brooke became more and more difficult to interact with.

We’ve come a long way since then. Her progress has been tremendous. But there is still a long, long way to go.

And moments like the one this morning as I slipped into the pool are tough reminders that maybe, just maybe, life would be different right now had I been more aware.

If only I had been more aware.

Had we given Brooke the therapies she needed at a much younger age, maybe her autism would not be as severe. Maybe her social interactions would not be as difficult.

This month is important. This month can save lives. Awareness can alter the course of personal history.

Please, PLEASE, don’t let Autism Awareness end with the turning of the calendar.

You just might ease the life-path of a little girl or boy and save the collective life of a family.

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Why do you run?

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Every once in a while I wonder –

what will her life be like?

who will she call friends?

how many of them actually will be?

will she be able to live independently?

who will watch after her?

will her older sister feel burdened?

will she be…happy?

Autism Awareness Month is a double-edged sword.

I am thankful that so many out there, including many of you, are so supportive and even pro-active.  I’ve witnessed the beginnings of a DOAM-Tree; I’ve seen light bulbs go off in peoples heads and on on their porches; I’ve read the President proclaim the official national observance of Autism Awareness Day.

But I’ve also had the harsh reminder that my daughter has autism – more severe than some, not nearly as severe as others; I am constantly reminded that her life will not follow the path of her friends, her cousins or her sister; I’ve watched as she struggles to initiate social interaction and keep up with those that are moving too fast to slow down, even at her own birthday party; I’ve watched as the events of a day simply prove too much, leading to an evening of uncontrollable crying; I’ve impotently stood by, knowing there is nothing I can do other than to just be there with her.

And that is when the cracks come.

I do a pretty good job of holding it together most of the time.  My wife is the cryer – she likes to say she and her side of the family have leaky eyes.  It’s not a negative or positive thing – it is just who they are.  In part because of that though, I have built a wall to keep my tears on the inside.  It would do our family no good if we both ended up in puddles of tears.  I will and do cry, sob, thrash, scream, lash, break down – but it is always inward, never, if rarely on the outside.

Running has helped with that.  Much of the raw emotional energy that comes from the pain of watching my child struggle has been channeled into 4AM runs – I try my best not to run angry, but sometimes I have no choice.

But you can’t run away from pain.  You can’t run away from hurt.  I can’t run away from autism.  I won’t run away from my Brooke.

And so the cracks come, and the eyes begin to leak.

As quickly as they come though, a finger is put in the dam and the leak is stopped…for now.

what will her life be like?

who will she call friends?

how many of them actually will be?

will she be able to live independently?

who will watch after her?

will her older sister feel burdened?

will she be…happy?

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Why do you run?

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Lighting It Up Blue

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

Today is World Autism Awareness Day. Although awareness is not the goal, it is the means to get us there. I would like to thank each and every one of you who lent words of support, left comments on my wife’s letter to the president and went out and lit it up blue last night.

I am sorry to say that we did not succeed in getting the White House to do the same. We did get President Obama to say —>THIS<—, and the White House did contact my wife for —>THIS<—, but we were really hoping for —>THIS<—.

Thank you again for your time and effort. I’m sorry we could not make it happen.

For those that lit it up blue last night, I hope you will consider leaving your lights like that until the end of the month.

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