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Posts Tagged ‘#autismstreaks’

It’s been a rough, tough couple of weeks here.  For those that don’t follow me or Jess on Facebook or Twitter, we received news earlier this week that Brooke has in fact been suffering from brain seizures.  Jess and I were, despite preparing ourselves for the possibility, completely rocked.  The news from the neurologist was followed up just hours later with more difficult news from Brooke’s neuropsych (or as Jess calls him – Dr. Dreamy).  Her verbal IQ had taken a frightening tumble over the last year, dropping her into the bottom one percentile of her peers.

Yeah…Jess and I walked out of there a complete mess.

That was Wednesday night.  Thursday went by in a complete blur.  Jess stayed home to prepare for Brooke’s team meeting at school, while I drove her around to attend to those preparations.  I just wanted to get to the end of the day and go to sleep.

Sleep didn’t help.

I woke up this morning just as distraught, just as angry, just as stressed.  So many of you have sent words of love and support and offers of connections to doctors.  Up until today, that had been my lifeline – I can’t thank you enough.  I know there are people out there who say that social media has made the world a colder, less inter-personal place, but after what you did for me and Jess Wednesday night and yesterday, I could not disagree more.  Like I said, you have been my lifeline.

But then something else happened today.  Instead of running angry as I have for the last several days, I decided to run comfortably; to purposely run at a slower, steadier pace.  I kept my pulse in the high 120’s and just glided for 5 miles before turning up the pace a little.  It was meditative, contemplative, reflective.

At the end of the run I took my usual “#AutismStreaeks Day Fill-In-Blank” photo.  The sun was behind me, which I hadn’t realized, and created a burst across my face in the photo and it struck me – even the darkest of nights must eventually give way to the sunlight.

...even the darkest night must eventually give way to the sun...

…even the darkest night must eventually give way to the sun…
#AustismStreaks Day 46

 

Brooke will get through this, as will Jess, Katie and I.

Thank you for being our sunlight.

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Six weeks already? Wow!  This was a tough week – between Brooke’s EEG and a storm that finally delivered what the weathermen had promised, it has been a tiring week.  That said, there were a couple of really good runs – Thursday’s 10-miler proved to be one of my best efforts of the year (the last 2.5 miles coming at a 6:44 pace) and that was preceded on Wednesday by a very zippy 6-miler that was way faster than last Sunday’s race.  Running in the middle of Nemo was an adventure to be sure, followed the next morning by an ice cold run – 9°F!  Yikes!

All in all a good week of running despite a tough week at home.

Hope you all got your miles in this week!

-Luau

Week 6:
February 05 6.0 miles 52:18 8:43 pace aHR 123
February 06 6.0 miles 42:03 7:00 pace aHR 149

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Day 37 – a zippy 6 where I just missed going sub-42

February 07 10.0 miles 71:11 7:09 pace aHR 147

Day 38 - Best run of the week - run on very little sleep - last 2.5 miles were at 6:44 pace!

Day 38 – Best run of the week – run on very little sleep – last 2.5 miles were at 6:44 pace!

February 08 3.0 miles 24:14 8:05 pace aHR 129

Pre-Nemo Run

Day 39 – Pre-Nemo Run

February 09 5.0 miles 45:32 9:06 pace aHR 134

Day 40 - 5 Snowmageddon Miles

Day 40 – 5 Snowmageddon Miles

February 10 2.0 miles 16:55 8:58 pace aHR 156

Day 41 - Post-Nemocalyptic Run in 9° temps

Day 41 – Post-Nemocalyptic Run in 9° temps

February 11  5.0 miles 40:00 8:00 pace aHR 135

Day 42 - 6 Weeks in the books

Day 42 – 6 Weeks in the books

Week 5 Total – 37.0 miles

#AutismStreaks Total – 207.0 miles (as measured by Garmin 610) – puts me 3 miles behind my mileage of at least 5.00 miles per day.

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

  • Download App
  • Download App

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My reason...

My reason…

It’s been a tough week at Chez Luau – last Monday Brooke came down with a headache that became so bad that we decided to take her to the ER. The doctors in the ER ruled out stroke and meningitis, but could not figure out what had happened other than to say maybe she had a virus coming on and her system went “haywire”. Not very satisfying. They could not rule out brain seizure.

That was followed up with an EEG on Thursday and a meeting with a neurologist later this morning.

For whatever reason, autistic kids have something like a 25-40% chance of suffering a brain seizure before/as they enter puberty. It has loomed large on the horizon for us, but last Monday’s headache, followed by falling asleep right after dinner on the couch and certain behaviors while Jess and Brooke were waiting in the ER brought those concerns into focus.

***

On Saturday, while out running 5 miles in the middle of the Nemocalypse, I came to another “why” moment. Not the “why me” kind of why; no, the “the reason why I run” kind of why.

After 5 miles during Nemo...

After 5 miles during Nemo…

The autism community is split when it comes to topics of science and research, especially when talking about an organization like Autism Speaks. Jess has written extensively about the power dynamic between autistic people and their parents. Parental advocacy can look very different than self advocacy. Along with its awareness campaigns, an organization like Autism Speaks funds quite a bit of research into the possible causes of autism. Some people talk about possibly finding a “cure” for autism through this research.

When Brooke was first diagnosed with autism, the first thought that came to mind was how do we cure this? This thinking does not sit well with many of the self-advocates because, well, to put it simply, they don’t feel the need to be “cured”. Jess has made this point more eloquently many times over, but the point is this – how would you feel if someone was constantly telling you that you needed to be cured of something that was intrinsically you? I don’t think it would feel so good.

But that being said, I still run for Autism Speaks and I still raise funds for them – along with trying to raise autism awareness, this whole #AutismStreaks thing has essentially been a fund raiser for them – and it is situations like this past week that have reinforced my belief that research is necessary, that funding for science is a must.

What we find out regarding Brooke over the next few days is almost irrelevant in the big picture. We will find out that Brooke either had a migraine or had a minor seizure or that her system is completely normal and as the doctors said in punting Monday night, her system went haywire under stress. The bigger picture is that our kids DO suffer from a significantly higher incidence of seizures. Science can help up determine why, how and maybe even what we can do to prevent those seizures.

There was a time when, if offered, I would jump at the offer for a pill that would “cure” Brooke of autism…as a parent, I would be lying if I said that I still wouldn’t consider it, but the truth is, I know there would be hesitation on my part, because I wouldn’t want to lose WHO Brooke is. Ultimately, it would have to be her decision, not mine. But in the meantime, I feel like with proper funding, science CAN realistically attempt to understand why brain seizures are happening to our kids. Even if there is no project currently exploring the connection between our kids and brain seizures, the history of science is filled with accidental discoveries – so it’s not unreasonable to think that as scientists delve into the causes of autism, they may stumble onto the cause of these seizures.

It’s another reason for me to run – another reason to keep #AutismStreaks going even when my legs or lungs or brain tell me it’s time for a rest – another reason my heart continues to say Run Luau Run!

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The temperature on my phone read 18°F.

And it was snowing.

And it was a little breezy.

Just awesome… I thought.

Am I really gonna do this?

No, I wasn’t asking myself if I was going to run – I’ve run RaceMenu’s Super Sunday race every year since 2009.  It’s has a special place in my heart having been 1.) my very first road race and the following year being 2.) the best performance I have ever had in a road race.

No, I was definitely running.  The question was whether I was going to be crazy enough to take off the singlet and go bare-chested with #AutismStreaks written on my chest.

I had been pretty certain I was doing this – that is until Friday afternoon when I came down with a debilitating head and chest cold.  I was so out of it Friday night that I had to skip much anticipated dinner plans with family friends.  After a cocktail of homeopathic and OTC remedies, I had pretty much recovered by Saturday morning, but I was still feeling the lingering effects.

As I got myself dressed to head out, I took my singlet in my hand.  I thought about putting it in my backpack, but instead dropped it on the floor – my decision was made.  I then woke up Jess, handed her a sharpie and put her to work.

***

My original thought was to stay completely clothed until the starting gun.  Unfortunately, if I wanted to be able to check my stuff, I was going to have to do it a good 15 – 20 minutes beforehand.  As I stripped down to my running shorts I got a lot of  “Oh my God!”‘s.

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It would be the most repeated statement of the day.  At 20°F, I knew I could be pretty much viewed only as absolutely crazy.  I moved into the tent to wait until the last minute to join the starting crowd.   While there I got plenty of “way to go”‘s and “nicely done”‘s.  One woman even asked if she could take a picture with me – who was I to say no?

Finally, with what I thought was just minutes to go, I made my way with my buddy JB and his friend Ed to the starting line.  We moved to the back of the crowd.  My reasoning was that I wanted as many people as possible to see that I had “sponsored by Charity Miles” across my back –

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– hopefully at least a few of the approximately 1300 people I would pass along the way would get curious, google “Charity Miles” and start raising money on their own for their favorite charities.  With the wind blowing and the snow falling, my body began to shiver.  Despite having on a hat and gloves, I was standing still and I was cold.

All I needed was a starting gun, but the opening ceremonies dragged on and on – truth be told, I’m sure they weren’t any longer than any other race, but when you’re standing in 20° snowy, windy weather, half-naked, time slows down big time.

Finally the gun went off.  It took us nearly a minute to get to the starting line.

As we weaved our way through the crowd, my nakedness paid off immediately.  Every small pack of people I passed noticed “the naked runner” and commented on the writing – along with the “Oh My God!”‘s I got plenty of “GO Charity Miles!”‘s.

Awesome! I genuinely thought!

Fighting the crowds, our first mile was the slowest, coming in at a leisurely 8:16.  By the time we hit mile 1, my legs were warming up.  As the packs thinned, we picked up our pace covering the second mile in 7:35.  It’s funny how being cold can motivate one to run faster.  As much as I was warming up, I kept thinking about the fact that I was still not fully recovered from being sick on Friday.  My upper chest began to tighten.  Now under normal circumstances, that would be a signal for me to slow it down, but dammit, I was cold and I wanted some of that Oatmeal Stout I had been eyeing before the race.  JB asked how I was doing.  Okay…I think.  Hurtin’ a little. He cracked the whip and said let’s turn it up a little!

So we did.  Mile three came in at 7:08.

The Super Sunday 5 is two races.  There is the 5-Miler which we were running, but there is also the 5K Bailout, where you can bail out at 5K and then take a bus back to the start.  I have to admit, just briefly, I had a moment of wanting to bail out.  My chest was burning from the cold air.  But as soon as the thought was in my head, it was banished.  I was continuing to pass people along the way at a steady clip (an advantage of starting at the very rear of 1500 people) and the steady stream of comments drove me on.  JB and I once again picked up the pace – mile four got cover in 6:48.

I knew that the pace at which we started the race wouldn’t allow me to approach last year’s finishing time, but with one mile to go we decided to empty the tanks just for fun.  JB and I went back and forth.  On the second to last turn we were in a dead run and he shouted, next turn we sprint to the finish.  All I could think was I thought we WERE sprinting.

But he was right – we made the final turn for home and we both found one more gear.

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#AutismStreaks streaking toward the finish line

There was a young kid maybe 15 yards ahead of us.  We started to close on him rapidly.  I was sure we would catch him – that is until someone along the sideline warned him and he too found one last gear.  We continued to close on him but ran out of real estate.  I think if we had had another 20 – 30 yards we would have had him.  The last mile was covered in 6:29 – according to the Garmin we covered the last 150 yards at 4:49 pace.

36:28.  183rd place out of  over 1500 runner, 15th out of 72 runners ages 40 – 45.  Not bad.  I have to admit that part of me had been looking to go sub-35, but considering the condition I was in, I wasn’t complaining.  JB and I made our way to the tent and more importantly to the beer.

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I highly recommend Mayflower Oatmeal Stout as a post-run recovery drink!

After chatting with some runners and cooling down (yes, I was actually warm when I finished), I ran into some more friends, taking the opportunity to snap a shot with twitter pal and fellow blogger @kissing_frogs before heading home.

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photo op with @kissing_frogs

Hopefully, somewhere out there this week, somebody from that race has googled and download the Charity Miles app and is out there running, raising money for their favorite charity.

Maybe it’s you?

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I thought the slightly milder weather this past week would bring a few more miles, but sometimes life doesn’t play out as planned. It didn’t help that I came down with something on Friday, cutting my planned Friday and Saturday runs short. Despite my head and chest cold, I did get to run one of my favorite races of the year – the Super Sunday 5-Miler put on by RaceMenu. It’s hard to go wrong when finishers are greeted by FIVE different brewers of beer, each presenting a variety of their brews. A race report is on its way.

I hope everyone got some miles in this week!

-Luau

Week 5:
January 29 5.0 miles 36:20 7:16 pace aHR 151 (surpassed 150 miles YTD)
January 30 5.0 miles 42:43 8:32 pace aHR 132
January 31  1.0 miles 09:27 9:27 pace aHR 150
February 01 4.0 miles 29:46 7:26 pace aHR 137
February 02 2.0 miles 15:40 7:50 pace aHR 182 (short mileage after debilitating head cold Friday night – don’t think the HR monitor was functioning properly)
February 03 5.0 miles 36:28 7:18 pace (Super Sunday 5-Miler – didn’t wear heart monitor – race recap coming)
February 04 2.0 miles 13:58 6:59 pace aHR 144
Week 5 Total – 24.0 miles

#AutismStreaks Total – 170.0 miles (as measured by Garmin 610) – puts me 5 miles behind my goal of averaging at least 5 miles a day. Hopefully I get it back this week.

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Waiting for the start of the Super Sunday 5-Miler – it was 22°F and snowing!

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

  • Download App
  • Download App

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It was c-c-c-c-c-coooold this week.

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A lot of runs were in the low to mid teens, which I think, combined with a busy schedule limited my miles. That didn’t stop me from contemplating going out in a singlet…

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I’m not sure if it was that I’m starting to get back into running shape OR if I was just motivated to get done because I was so friggin cold, but that 5-mile run was my fastest (6:55 per mile) of the year.

After my 5-miler in 19ºF weather in a singlet and shorts - "just get me out of here!!!"

After my 5-miler in 19ºF weather in a singlet and shorts – “just get me out of here!!!”

Two days later brought an unexpectedly quick 11-miler that also happened to be my longest run of the year.

Hard to believe that #AutismStreaks is already at 28 days. Leaves me 72 days to reach Kelly, Michael, Kathie Lee and Hoda. If any of you know them, please feel free to pass my letter on to them!

Hope you are staying active!

-Luau

Week 4:
January 22 1.0 miles 08:32 8:28 pace aHR 114
January 23 5.0 miles 39:22 7:51 pace aHR 141
January 24 4.0 miles 28:56 7:14 pace aHR 141
January 25 5.0 miles 34:35 6:55 pace aHR 172
January 26 3.0 miles 25:23 8:28 pace aHR 130
January 27 11.0 miles 84:24 7:38 pace aHR 147
January 28 3.0 miles 23:24 7:48 pace aHR 139
Week 1 Total – 32.0 miles

#AutismStreaks Total – 146.0 miles (as measured by Garmin 610)

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

  • Download App
  • Download App

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Streaking

The Streak Continues…

21 Days in the books.  Better than 1/5 of the way there.  Due to differences in GPS measurements, I’m at 116.851 “Charity Miles” miles.

Wanna help your charity of choice simply by running or biking or walking?

Get the Charity Miles app:

  • Download App
  • Download App

Week 3:
January 15    1.0 miles   07:36  7:36 pace    aHR 156
January 16   5.0 miles   41:29   8:17 pace    aHR 134
January 17   8.0 miles   58:27   7:18 pace   aHR 151
January 18   8.0 miles   71:41   8:57 pace   aHR 116 (100 miles on the Garmin as of today!!!)
January 19   4.0 miles   39:55   9:58 pace   aHR 111
January 20   7.0 miles   55:02   7:52 pace   aHR 146
January 21   3.0 miles   23:06   7:42 pace   aHR 133
Week 1 Total – 36.0 miles

#AutismStreaks Total – 114.0 miles (as measured by Garmin 610)

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original

“We’re going streaking through the quad…”

 

So I’m finally embracing this streak.

Once a week I’m am going to post a summary of the runs from the previous week.  I’m using the “Streak” more than anything as a motivational tool to get me back to my love of running.  So far it has worked like a charm – every day I’ve felt that old urge to get at least some miles under my feet.

I’m even posting on dailymile again.  Anybody who has tracked their mileage in the past, knows what it means to have walked away from tracking miles to then return to it.

The great part of this streak so far has been that I want to run – that need has returned, all without an “A” race in the near future.  Sure the Vermont 50 looms over the horizon, but quite honestly that hasn’t really sunk in quite yet.

Who knows how long this streak will go.  The post that my buddy Doug put up said 100 days – I’m better than an eighth of the way there.  The coolest part of this is that every day, by using the Charity Miles App, I’m raising funds for Autism Speaks and giving a voice to autism.  Will I make it to 100?  I don’t know.  I’ve always been a proponent of rest days, but sometimes you have to weigh physical need with psychological need.  If I make it to 100, will I keep going?  We’ll cross that bridge when, and if, we get to it.

Week 1:
January 01    6.0 miles   47:40  7:57 pace    aHR 158
January 02   6.0 miles   46:07   7:41 pace    aHR 168
January 03   4.0 miles   30:04   7:31 pace   aHR 153
January 04   6.0 miles   48:16   8:02 pace   aHR 157
January 05   3.0 miles   26:13   8:44 pace   aHR 145
January 06   7.0 miles   57:24   8:12 pace   aHR 140
January 07   3.0 miles   21:18   7:06 pace   aHR 156
Week 1 Total – 35.0 miles

Week 2:
January 08   6.0 miles   49:37    8:16 pace   aHR 141
January 09   7.0 miles   63:14     9:02 pace  aHR 124
January 10    3.0 miles   21:39    7:13 pace   aHR 150
January  11  10.0 miles  1:17:39  7:45 pace   aHR 145
January 12    4.0 miles   33:00   8:15 pace   aHR 130
January 13  10.0 miles  1:21:50  8:11 pace   aHR 139
January 14    3.0 miles   28:53   9:38 pace   aHR 120
Week 2 Total – 43.0 miles

#AutismStreaks Total – 78 miles

Any experienced streakers have any words of advice?

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