Feeds:
Posts
Comments

Posts Tagged ‘light it up blue’

Today is Brooke’s 11th birthday.

11.

When did that happen?

Yesterday we were blessed to have many of her friends and classmates over for a birthday party that included a planned surprise (check over on diary for the details), live animals (her favorite was the chinchilla), dancing, a piñata, pizza, cake and dough babies.  I think it is safe to say that everybody had a good time.

https://www.youtube.com/watch?v=8TlX7kyXlCY

But even in the midst of all this fun, I was reminded just how different Brooke is from many of her peers.  Watching her throughout the party I was able to see just how far she has come and just how far she still has to go.  I don’t mean in the “to be more like her peers” sense, but more in the “developing an ease with her environment” sense.

Anyway, I was reminded of Autism.

***

Tomorrow is the first day of Autism Awareness Month.  It is a time that many of the big advocacy groups push awareness, fund raising, etc.  Undoubtedly there will be arguments and heated discussions between those who align themselves with the various groups.  As you may or may not know, for a very long time, Jess and I were supporters of Autism Speaks.  Over the course of many years, we walked their walks, we ran their races, we raised a lot of money for them.  Last November I ran my last race with them – the New York City Marathon.

Days later, Suzanne Wright would write those controversial words, essentially marginalizing autistic adults.  It’s her organization.  She can do with it what she sees fit.  Jess and I could no longer support them.  It wasn’t easy to walk away – in fact, I wrote about the first Charity Miles run I took post-speech…a sad, difficult day for me.

I moved on.

But here we are, on the eve of Autism Awareness Month.  I still get emails from Autism Speaks, urging me to “Light It Up Blue!” for awareness.  As much as I want to, I cannot.  I know that Autism Speaks does not own the color blue, but it seems that they have co-opted it and made it their own (along with the puzzle piece).

Autism Awareness Day is the day after tomorrow.  Many people I know and respect will light it up blue.

I cannot.

Instead, I ask you to consider another option.  The whole point of the “Light It Up Blue” campaign was to get people to ask, get people curious, get people aware.  How about instead of vaguely inviting people to ask questions about autism, we instead do so overtly.

***

Autism

Awareness
Acceptance
Support

Love

***

respect the stim

celebrate neurodiversity

***

let’s talk about autism

***

autism is one word,
but there is no one autism

***

nonspeaking does not mean having nothing to say
question what you think  you know about autism

***

These phrases are on T-shirts (click on each phrase to link to the shirt) that Jess designed in response to our older daughter asking what we should do for Autism Awareness Day now that we were no longer affiliated with Autism Speaks.  Initially we were stumped; wearing blue just didn’t seem right anymore – I have even retired the Blue Afro.  I don’t say this often enough about my wife, but I think she is brilliant.

I know that at the time of this posting it is essentially too late to get these shirts for Autism Awareness Day, but I hope you will consider not only purchasing one, but wearing it, not just for the month of April but all year round.  Autism awareness isn’t, shouldn’t be just a day or month out of the year; it should be 365 days a year.

***

As my baby girl turns 11, I ask you to help me…no, scratch that…help my Brooke make “awareness” more than just wearing a color or lighting a bulb…

Challenge your family, friends, acquaintances, yourself on what we know about autism…

Talk about autism…talk about the many autisms…

Help Brooke turn awareness into acceptance, support, respect of differences, but most importantly, love.

Advertisements

Read Full Post »

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.

Read Full Post »

[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.

Bookmark and Share

Why do you run?

Read Full Post »

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

Yesterday afternoon, while at school pick up, a mother tracked me down…

“I’ve been meaning to tell you,” she started, “your blue hair…”

She went on to tell me how she had been sitting watching a group of kids.  The topic of Brooke’s dad with the blue hair spontaneously came up in conversation which started a discussion about autism, autism awareness and what autism is…among the kids…with no adults!

She wasn’t close enough to hear every detail, but she was impressed that the kids carried on the conversation for some time and that the topic had been brought up because of my blue hair.

“I thought you would want to know your blue hair is doing its job,” she said.  She was absolutely right.

I told her maybe I should think about keeping my hair blue all year.

“No, no,” she replied, “then they’d get used to it.  Every once in a while, it’s good to shock them and make them think.”

Even though I’m getting my marathon out of the way with NYCM next weekend, maybe I should consider going blue again next year.  I feel like each conversation Brooke’s peers have about autism is one more kid who is aware that different is okay.

Thank you to the mom who let me know that I was making a difference even when I wasn’t around.

Read Full Post »

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

Yesterday, if you were on the Twitter and following me (@luau), you would have seen the stream of pictures that follow. The quick story for those new here is that I put it out there in cyber-space a couple of weeks ago that if we were able to help my wife Jess reach her goal of $10,000 raised by the time the Autism Walk in Boston arrived, I would run my next marathon with blue hair in honor of Autism Awareness. I put out this challenge just a few before the walk and a couple of grand short. We didn’t think we were going to make it.

Lo and behold, on Walk Day how much was on Jess’ fund raising page?

$10,000.01.

My dearest friend Lurch (together we are known as Lurchau) had come through with an incredibly large donation at the last minute. Personally, I think he just wanted to see me run with blue hair.

Anyway, that is how I ended up at Stilisti Boston yesterday. It was quite the ride. Marisa, the owner of Stilisti Boston and one of the top stylist anywhere, was kind enough to donate the job for the cause. Thank you Marisa (and the rest of your staff). You. Are. Amazing. They made me feel right at home – actually, they kinda made me feel like a celebrity. You will notice in some of the pictures the group of beautiful women surrounding me. No, it’s not because of my dashing good looks or the curiosity of a suburban dad dyeing his hair blue. No, it is because these women were there to learn from the best in the business (Marisa, not me). You can find Stilisti Boston at http://stilistiboston.com/ on the Interwebs or 138 Newbury Street, 2nd Floor in Boston – 617-262-2234. I’d also appreciate it if you’d consider following them on Twitter at @stilistiboston.

Again, thank you Marisa, thank you Lurch, thank you Jess, and thank you to all who helped us get over the $10K mark.

Thank you to all of you who sent encouraging and entertaining words and comments (yeah, I’m looking at you @mynameisMarc! 🙂 )

Can’t wait to run New York with my blue hair.

The ride begins...

waiting for Marisa

the bleaching begins...

hair dryer time

bleach is starting to do its work...

touching up the ends...

time to hit the roots

time to wash this stuff out

rinse, rinse, rinse

wow...that's blond!

gotta get it dry before coloring...

...maybe I could get used to this...

view from the back

I look like a crazy man

let the dyeing begin...

waiting for it to set...

time to rinse and lock

unfortunately I had to run out to pick up the girls from school...priorities you know...

a shirt I will be wearing a lot for the next month

...finished product - THANK YOU Stilisti Boston!!!

Read Full Post »

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

So tomorrow is the day.

Tomorrow morning at 10:45 I will, for the first time in my life be dying my hair – not to wash away the gray (it’s there by the way), not to add highlights (a little too Metro’ for me anyway), but to go blue, specifically Autism Speaks Blue to promote Autism Awareness.

Jess’ stylist, who has so generously donated the job, is going to be washing, bleaching and coloring this shaggy head.

The closer I get to it, the more I realize just how nutty of an idea this was – but if I can get just one person every day to ask me why I did it, it will be well worth the funny looks.

So tomorrow is the day.

I will post pictures of the transformation here on the blog either tomorrow afternoon or Friday morning, BUT for those who simply cannot wait and want to watch the change almost as it happens, I will be live tweeting the transformation.

So if you’ve got nothing better to do tomorrow morning, hop on to Twitter and follow me @luau.

For now, I am going to enjoy my last few hours with normal colored hair.

Read Full Post »

We interrupt your regularly scheduled running blog for this message –


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

A couple of days ago, my wife was asked to write a letter to the President…yes, that President!

The point of the letter was to tell President Obama why she thought that he needs to light the White House blue on April 2nd in support of World Autism Awareness Day.

She did a fabulous job.

Ideally, there will be enough comments left in the comments section of this letter that our President will feel compelled to do it.

I’ve been reading through the comments though…so many. I have noticed that the voices are mostly those of mothers, sisters, aunts and grandmothers…where are my fellow fathers, brothers, uncles and grandfathers? Come on guys! Your lives are just as affected and your voices can be just as effective.

Please read her letter and leave a comment —>HERE<— and tell President Obama to light it up blue!

Bookmark and Share

Why do you run?

Read Full Post »

%d bloggers like this: