Feeds:
Posts
Comments

Posts Tagged ‘autism’

Today is World Autism Awareness Day.  All around the world, landmarks will be lit up blue (though we’re still waiting on the White House, Mr. President!) and a plethora of autism bloggers will write about the necessity of awareness and funding.  Some bloggers and advocates will even say things like “we are passed awareness, everybody knows somebody who is impacted by autism.”

I’ve struggled over what I should write about today – it is such a big subject.  This is where my thoughts (and events over the last few days) took me…

***

The Run Luau Run/diary of a mom family has been a big fan of JetBlue Airways for a long time.  They just make traveling easy.  Early on, as brand new parents, we appreciated the simple additions of television screens, but as our family grew and we were confronted with the challenges we face, we came to love the airline even more.  Jess has written a few blog post about them here way back in April 2010  and here from April of last year  and here and here from January of this year.

They way they have listened to the Special Needs community and made changes in the way they do things is exactly what anyone hopes a company would do.

Awareness is working – is it the answer to all our issues as a community?  Not even close, BUT it is a starting point – a place where education can happen, where understanding can happen, where compassion can happen.  None of those thing happen without Awareness.

But it was a phone call and then email I received last Friday from JetBlue that simply blew me away.  If you follow me on Facebook or Twitter you may have already seen this, but I think that it definitely warrants its own blogpost here on Run Luau Run.  Friday afternoon I received a phone call from a gentleman from the JetBlue social media department.  To be honest, I was in the middle of some stressful stuff and I wasn’t really paying attention at first.  I thought he was either trying to sell me something or have me take a survey that I had no time for.  Once he clarified who he was, he simply said that he wanted to send an email to Jess and me and wanted us to keep an eye out for it.  He didn’t say what it was, but he had a feeling we’d get a kick out of it.

The folks at JetBlue knew that Brooke’s birthday was this past Sunday; they also knew that one of Brooke’s favorite characters is Dora the Explorer – so they put this together:

When I show it to Jess, she cried.

When we showed it to Brooke…well, you tell me whether you think she liked it or not:

To top it all off, the day after her birthday, on the first day of Autism Awareness Month, this arrived in the mail from JetBlue:

photo 1

which had this inside:

photo 2

and was filled with all this:photo 3

which Brooke happily modeled:photo 4

My point is this – raising awareness is working, it is making a difference.  Whether it is companies like JetBlue changing the way they do boarding or interact with their passengers or Mophie donating battery packs to help some idiot run 100 miles while using the Charity Miles App or even Katy Perry happily donating 25 blue wigs to a bunch of marathoners, awareness is helping change attitudes toward autistic people.

Today I will wear my Autism pin and just like any other day of the year, talk to whomever is willing to listen about autism – I will gladly talk about insurance coverage, accessibility, adult services, employment, education; I will do whatever it takes to convince people that we need to help make the world better, more accessible, not just for my Brooke, but for autistic people everywhere.

All those things start with one word – Awareness.

Read Full Post »

I don’t know if you play the lottery, be it Powerball or Megamillions or both.  I don’t play often, but when the numbers get up high enough, I usually can’t resist at least putting a couple of bucks down – you gotta be in it to win it, right?  And you just never know.

If you play like I do (or more often for that matter), you may relate to that feeling when you put that ticket in your pocket – can you imagine?  wow, what would I do with $100 million?  I would… and the list then goes on and on and on.  It’s wishful thinking at its very best.

Of course, you never win more than a few dollars and you fantasy of a worry-free life goes “poof” just like any other dream does when you wake up in the morning.

***

Yesterday was Brooke’s 10th birthday.  All month, scratch that, all YEAR she as been talking about turning 10; how it’s the biggest one zero, how she’ll be a big kid, how she’ll be double-digits.  All that talk lulled me into a “just bought my lottery ticket” state.  It’s not that I was thinking or even wishing that she would wake up on her 10th birthday without autism.  No, being autistic is part of who Brooke is.  The feeling for me was the flickering thought that somehow turning 10 would give Brooke special powers to deal with the difficulties that can come along with autism; that somehow now that she was 10, she would be able to handle and not scream at the sound of her sister’s coughs, that she would be able to easily adjust to eating at a restaurant that wasn’t part of the original plan, that she could refrain from yelling when people asked her to repeat what she said, that she wouldn’t get overwhelmed at the thought of conveying that she had changed her mind about something.

I don’t know why or how I had convinced myself that these things would happen just because my baby was turning 10.

***

I have to remember that Brooke will make her way…it will just be at her own pace, in her own way, in the order that works for her.

Making a wish...Happy Birthday my little Angel!

Making a wish…Happy Birthday my little Angel!

Read Full Post »

It’s hard to believe that #AutismStreaks is already 12 weeks old – 84 straight days of running!

A busy couple of weeks highlighted by a fun 5K on St. Patty’s Day and an easy 16-miler with my buddy JB this past Sunday.  I don’t think we stopped talking the entire 16 miles.  Hope it’s been a good couple of weeks for you and that those who are running Boston this year aren’t going too crazy with their tapers.

Coming in to the finish line at the Inaugural Leprechaun 5K - 20:20 (8th overall, 3rd in AG, 1st in LHR - Leprechaun Hat Runners)

Coming in to the finish line at the Inaugural Leprechaun 5K – 20:20 (8th overall, 3rd in AG, 1st in LHR – Leprechaun Hat Runners)

With Julie C. - she did an amazing job directing her first race!  AND it was for a good cause - raising funds for the Nashoba Learning Group (click this picture to learn more about NLG)

With Julie C. – she did an amazing job directing her first race! AND it was for a good cause – raising funds for the Nashoba Learning Group (click this picture to learn more about NLG)

Me & JB after 16 miles where we didn't stop yapping for a minute.

Me & JB after 16 miles where we didn’t stop yapping for a minute.

Week 11:
March 12 – 7.0 miles 51:32 7:21 pace aHR 141
March 13 – 5.0 miles 38:50 7:46 pace aHR 129
March 14 – 7.0 miles 56:00 8:00 pace aHR 135
March 15 – 10.0 miles 1:19:32 7:57 pace aHR 138
March 16 – 1.0 miles 8:03 8:03
March 17- 5.0 miles warm up and cool down with a 20:20 5K in between
March 18 – 1.0 miles 9:00 9:00 pace

Week 11 Total – 36.0 miles

Week 12:
March 19 – 3.0 miles 25:52 8:37 pace
March 20 – 6.0 miles 50:32 8:25 pace aHR 122
March 21 – 5.0 miles 44:30 8:53 pace aHR 123
March 22 – 7.0 miles 50:24 7:12
March 23 – 5.0 miles 41:41 8:20 aHR 131
March 24- 16.0 miles 2:14:00, 8:22 aHR 133
March 25 – 1.0 miles 10:28 10:28 pace

Week 12 Total – 43.0 miles

#AutismStreaks Total – 457.0 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

Read Full Post »

My first thought was a stream of Woohoo’s and Yahoo’s and Yes’s and Woot Woot’s!!!  I couldn’t actually do it out loud because I was sitting in the waiting/observation area of Brooke’s gymnastics class.  When I received this tweet from Mophie, it was all I could do to contain myself:

download-1

But as I worked to keep my sense of excitement, joy and accomplishment inside, another thought popped into my head.

Oh Crap!!!

Don’t get me wrong.  I was super excited.  I am STILL, over 12 hours later, giddy over the news that yesterday’s post not only reached the fantastic people at Mophie, but that those fantastic people are sending me two, TWO, of their Juice Pack Pluses.

The conversation went something like this:

Mophie: We’d love to help you out! Send us a DM! #mophielovesyou

 

Me: I am sitting in my daughter’s gymnastics class lobby and I just yelped!

Mophie: …We saw your post and we wanted to help by sending you 2 of our juice pack pluses…

 

Me:…I cannot tell you how thankful I am!

Mophie: We’re happy to help! Now you just have to run your heart out and rack up those miles. 🙂

And that’s when it hit me.

Oh Crap!

There’s no turning back now.  There’s no deciding in May you know, my training hasn’t been what I wanted so I’m gonna do something else.   There’s no bailing.  Now my name is on the line.  On June 14th I’m running 100 miles or running for 30 hours, whichever comes first!  If I don’t follow through, then why would anyone even think about supporting me in whatever it is I decide to do the next time.

So there you have it.  Be careful what you ask for, because sometimes, just sometimes you get it…and when you do, you have got to follow through with your end of the request.

***

On what I feel is a pretty cool result of this whole thing is that many of you didn’t even know what Mophie was or what Mophie made.  Many fellow autism parents, who often rely on their iPhones to help their children wait in lines or transition from one part of the day to another sent texts or left messages that said they were extremely excited to discover that this product existed – in the end, I feel like this was a win-win-win situation for everyone.

Thank you Mophie for helping me in my endeavor – on race day there will be a sharpie tattoo on my shoulders that reads “Powered By Mophie”.  I know that the folks at Charity Miles and at Autism Speaks will truly appreciate the fact that I will be able to run the Charity Miles App for 100 straight miles, and I truly appreciate the fact that you are helping me make a better tomorrow for my Brooke.

Thank you,
Luau

Read Full Post »

mophie-iphone-5-juice-pack-air-battery-case-1

Dear Mophie,

(For those of you who do not know what Mophie is, they are a company that makes an iPhone case that doubles as an extra battery)

I need you assistance in a footrace I will be running in June.

I suspect that this is not a request that you get often, if at all, but it is true – I need your help.  I have been a user of your product for a few years now, first with my iPhone 3G and now with my iPhone 4G.  Your product has allowed me to use my phone worry-free throughout the day – it is a rare day that I crawl into bed at night with little or no charge on my phone.

I used my Mophie Battery Pack at the 2011 New York City Marathon to record my journey through the five boroughs and I STILL had enough juice to edit my recordings on the iMovie app and upload it to the web.  Yes, YOUR product made that possible.

But I am now in a pickle.  Between the built-in battery of the iPhone and the your battery pack I get about 15 – 18 hours of moderate use.  That’s well and good when running a marathon, but in June I plan to tackle the 100-mile distance.  The winner of that race just may finish within that time frame, but I am not nearly that fast.  The cutoff time for the race is 30 hours.  A few friends and I are each hoping to run 100 miles in less than 24 hours, but ultimately, we would just like to be able to finish.

You may wonder why it is so important that I have my phone while I am running those 100 miles – yes, it would be nice to have some music or a podcast playing, and I would definitely like to be able to record the highs and lows of our 100 mile journey, however, the main reason why I would like to have my phone with me is that I run with an amazing little app called Charity Miles.  This app allows me to raise money for charity with every mile that I run.  25¢ per mile may not seem like a lot, but the quarters eventually add up.

My daughter has autism.  Autism has impacted our lives in a very real way – forcing us to alter plans; causing one parent or the other to miss a performance of our older daughter; keeping us from being able to sit at certain restaurants or participate in dance recitals or engage in play dates…the list goes on.

When I run, and I’ve run every day this year so far in part thanks to your product, I have my Charity Miles app set to raise funds for Autism Speaks.  They are conducting ongoing research that will hopefully one day soon help alleviate the difficulties my daughter and those like her face on a daily basis.  Autism Speaks, while funding a broad range of scientific research is also working to help raise Autism Awareness.  This awareness has pushed people to think twice before simply dismissing my girl as a spoiled brat when she is having an anxiety fueled meltdown or calling her awful names because she sometimes seems to be intellectually incapable of grasping certain concepts.

I don’t know if anyone has every run 100 miles straight while running the Charity Miles app and frankly, I don’t really care – I just feel like this could serve as inspiration to ANY walker, biker or runner to get the app and start using it for their charity of choice (Charity Miles has a wide range of charities they raise money for)…and hopefully, some of those inspired folks will choose the same charity I choose, and bring closer the day that my soon to be 10 year old baby girl will find an easier, less anxiety inducing environment.

I am hoping that you will consider donating 2 of your most powerful battery cases for the iPhone 4 so that I can keep my phone humming at full strength as I attempt to cover 100 miles on foot in 24 hours.  Please feel free to contact me at runluaurun at gmail dot com (written out to avoid spammers) if you have any questions or need any specifics clarified.

Thank you very much for taking the time to read this,

Luau

***UPDATE!!! I received this tweet from Mophie – THANK YOU!!!***

download-1

Read Full Post »

I sometimes wonder, what the Hell did I do?  What did I do to deserve this?

***

Oh, Luau…the Lord moves in mysterious ways.  We cannot know what his plan is.  We can only have faith that he has us on the right path and that he will only put challenges in front of you that he knows you can overcome.

Yeah?  Tell that to the guy who disappeared down a sinkhole last week.

***

Last night Jess, Brooke and I went to go see Katie in a school production of a musical.  Katie had been fighting a bad cold all week, but was determined to perform.  Little Brooke was even saying that she was excited to see the show.  Everything was going great – Brooke was singing along, watching, keeping an eye out for Katie – yes, everything was going along just fine…that is, until it wasn’t anymore.

Just before intermission Brooke turned to me and said, this show is too long. 

I hushed her and said that intermission would be soon.  She then said she needed the restroom.

Fine, I thought, no problem.  We slipped out of the auditorium and were back in our seats in minutes.  When intermission arrived, I went to get a snack.  I was gone maybe 10 minutes at most.  When I returned Brooke was in full meltdown mode.  She was done, cooked, finished.  Jess walked her outside to try to calm her down but to no avail.  About 5 minutes later she came in alone.  A friend was watching Brooke in the lobby.

Can you take her home, she asked.

I sighed.  I wasn’t going to get to see the second half of the show.

I wondered, what the Hel did I do?  What did I do to deserve this?  To be clear, this question wasn’t directed at Jess.  There was no way I was going to let her miss the closing act of her baby.  Those two have a bond that is beyond special, beyond your typical mother-daughter relationship.  No, my question was for the Big Guy Upstairs.

What did I do?

WHAT HELL DID I DO, “LORD”???

I took little Brooke by the hand and trudged out of the school, shoulders slumped, on the edge of tears.  Upon arriving home, Brooke wanted to draw.  I told her one picture and then it was time for bed.  I slumped to the floor feeling sorry for myself.

I again wondered to myself, what did I do to deserve this? But then it struck me.  Maybe I did do something to deserve this; maybe at some point in my life I treated someone poorly or used terms that were inappropriate – who knows?  It didn’t matter.

My question morphed.  My thinking changed. My anger at the Petty Guy Upstairs grew.

The real question I should have been asking is What the Hell did Katie do to deserve this?  Why does she have to suffer collateral damage?

The answer?

Nothing.

She didn’t do anything to deserve this.  This whole “sins of the father” crap is just that…crap!  Petty, Vindictive Crap!

7 miles at 11 o'clock at night while blasting Zepplin II helped my mood a little...but not much.

7 miles at 11 o’clock at night while blasting Zepplin II helped my mood a little…but not much.

 

Read Full Post »

20130305-072154.jpg

Week 9 of #AutismStreaks brought highs and lows – for those of you who follow Jess, you know it’s been, well, an “interesting” week.  I was particularly pleased with my run on Saturday – a steady and strong 21-miler that was my longest run of the year by 9 miles.  During that run I shared a few miles with a gentleman named Errol, a runner from South Africa who was training for Boston.  While chatting he almost convinced me that I need to run Comrades, a 54 mile race in South Africa that changes direction every year; every other year it’s uphill, the other, downhill.  Let’s see if I still want to run Ultras after this year’s TARC 100 and Vermont 50.

I hope you got you runs in this week,
Luau

Week 9:
February 26 – 5.0 miles 37:58 7:35 pace
February 27 – 4.0 miles 31:54 7:58 pace aHR 128
February 28 – 7.0 miles 50:00 7:08 pace aHR 149
March 01 – 1.0 miles 8:32 8:32 pace aHR 146
March 02 – 21.0 miles 2:56:45 8:25 pace aHR 132
March 03- 1.0 miles 10:18 10:18 pace
March 04 – 5.0 miles 36:06 7:13 pace aHR 140
Week 8 Total – 44.0 miles

#AutismStreaks Total – 337.0 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

Read Full Post »

Family

Friends are the family you choose...and that choose you.

Friends are the family you choose…and that choose you.

They say you can’t choose your family…I beg to differ.

For those who don’t regularly follow either Jess or me on the blogosphere or elsewhere, it’s been a tough few weeks – we found out that Brooke has been suffering from brain seizure activity and that the seizures may be causing some language loss for our baby.  Although we have seen quite a bit of horizontal growth in her language over the last year, her vertical development has essentially stagnated, if not taken a step backward.  We are in the middle of the process of trying to figure out what is going on.  An MRI performed last week showed no abnormalities in her brain structure.  We are still waiting to hear what her 24-hour EEG revealed.

It’s been difficult and I wrote last week how many of YOU have been our Sunlight during this confusing time.  Part of my personal therapy has been to run – this streak could not have come at a better time for me; some runs have been full of deep thought, others have been an opportunity to simply shut out the outside world and go.  As you may know, I have run every run running the Charity Miles App.  Using the GPS in your smartphone, it tracks your run (or bike ride or walk) and makes a small donation for every mile that you cover.  I’ve written more about the app and Charity Miles —>Here<—.

I always thought that Gene (the founder) was a pretty good guy.  I liked his story and I liked what he was doing.  What I didn’t truly realize was that this guy is paying attention and he truly cares.  When Jess and I first found out about Brooke’s brain seizure activity, we were devastated and that devastation was reflected in my posts – Gene tracked my phone number down through a mutual friend and called me to make sure I was okay.  This isn’t a guy I know.  We have never met, but he cares about his Charity Miles team.  I was floored.

But it didn’t stop there.

A few days later, after finishing up a run, I went through my routine of logging my miles, first through the Charity Miles App.  The way it works is that after your run, in order to have the donations sent to your charity of choice, you must post that you ran using the app on Facebook and Twitter.  Charity Miles always has a few hashtags thrown in, I assume to draw attention to groups they are working with.  I always add the #AutismStreaks hashtag and the day before hitting send.  On that particular day, I was surprised to see another one: #TeamLuau

I blinked.  I didn’t think I had added that.  No, I’m sure I didn’t do that.  Then I wasn’t so sure – sometimes I do these things on auto-pilot.  I did a twitter search of the #TeamLuau hashtag – and there it was, on every Charity Miles run done for Autism Speaks.

I was speechless.  I tweeted Charity Miles that I was speechless, honored, thankful.

Their response?

Simply put?

We’re family.

Read Full Post »

Week 8 brought a 24 EEG and an MRI for the little one – by Friday I was cooked and could muster only a mile.  I’m not sure whether all the visits to the hospital or my lack of sleep affected my ability to think straight, but I also seem to have registered for a 100-mile race come June.  Good thing I’ve been doing all this base building!

Friday night would have been fantastic in the moonlight, but all I could muster was one mile...

Friday night would have been fantastic in the moonlight, but all I could muster was one mile…

Week 8:
February 19 – 7.0 miles 59:38 8:31 pace aHR 133
February 20 – 8.0 miles 1:00:33 7:34 pace aHR 156
February 21 – 8.0 miles 1:11:45 8:58 pace aHR 126
February 22 – 1.0 miles 10:00 10:00 pace aHR 147
February 23 – 9.0 miles 1:08:59 7:40 pace aHR 138
February 24 – 3.0 miles 24:59 8:19 pace aHR 125
February 25 – 7.0 miles 1:01:28 8:47 pace aHR 122
Week 8 Total – 43.0 miles

#AutismStreaks Total – 293.0 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

Read Full Post »

struggling through the news...

struggling through the news…

It was another week filled with run therapy – the news of Brooke’s brain seizures made the runs this week harder but all the more meaningful to me.  Ending Week 7 with a fantastic 12-miler with my bud JB was just what I needed!  Thank you again for all of your support this week.

Week 7:
February 12 – 3.0 miles 24:05 8:01 pace aHR 140
February 13 – 5.0 miles 37:46 7:33 pace aHR 138
February 14 – 6.0 miles 43:12 7:12 pace aHR 151
February 15 – 10.0 miles 1:17:46 7:45 pace aHR 132
February 16 – 1.0 miles 6:45 6:45 pace aHR 139
February 17 – 6.0 miles 49:14 8:12 pace aHR 134
February 18 – 12.0 miles 1:33:07 7:45 pace aHR 138 (hit 250 miles YTD on the nose)
Week 5 Total – 43.0 miles

#AutismStreaks Total – 250.0 miles (as measured by Garmin 610)

post-12-miler on Monday with my bud JB

post-12-miler on Monday with my bud JB

***

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

Read Full Post »

« Newer Posts - Older Posts »