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Posts Tagged ‘autism awareness’

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.

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I went out for a run this morning.  5 miles, 39 minutes on the nose.  I went out with no particular plan, but I eventually found myself at the local high school track.  While there, for no apparent reason, I decided to do a couple of Fartleks at 5 minutes a piece, averaging at about a 6:20 pace.  The run itself really is nothing to write about; it is rather how my run started that has me sad.

For over the past year I have been using the Charity Miles App for almost every run I do outside.

It is ingrained into my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit go, run.  For almost every single run over the past year and a half, this has been my routine, whether it be a training run, a fun run or a race.

The same thing, over and over.

Every run was inspired because I knew every extra mile was a little extra money going to Autism Speaks…every extra stride was money being spent on awareness…every step was improving the lives of autistics and their families…

With the family out on various errands and activities, I decided I needed to go for a run.  I went through my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit g…

I stopped.

I thought of Suzanne Wright’s call to action.

I stared at my screen.

I thought of Suzanne broadly painting every family with autism as lost.

I sighed.

I thought of Suzanne making it clear that their focus was on children only.

My thumb hovered over the start button…wavering just so.

I thought of the countless autistic adults who are being left behind by Suzanne Wright’s call to action.

I sighed and looked away, hanging my head.

I thought of the fact that Brooke is only a handful of years away from being an adult.

Sadness overcame me as I realized I just couldn’t bring myself to pressing start.

I swiped through the other very worthy charities that Charity Miles has teamed up with.  I finally settled on Achilles International, an inspiring group that helps disabled athletes compete in events like the New York City Marathon.  Although I did not cry outwardly, I was doing so on the inside.

Image

…feeling lost and sad after 5 miles…

I am sad.

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There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me.  For a while, running served solely as my version of therapy.  Along with the everyday struggles we all experience in life, our family also has an autism diagnosis.  I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her.  It took me some time to adjust my way of thinking…evolve, if you will.  Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged.  It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her.  Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure.  I was scared, not for me, but for my baby.  How on God’s green Earth was she ever going to make it without being cured of this…this…thing?  My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation.  For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness.  What would a cure mean anyway?  Who would I be left with?  Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion.  Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner.  She has made it clear that her focus is on children and on a cure.  She has chosen to ignore self-advocates and the whole of adult autistics.  I understand that the autism she and her family experiences may be different than that of mine.  I even understand why some families seek a cure – I was one of those people once upon a time.  There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult.  She will still be autistic.  My hope is that she will be able to advocate for herself and others like her if she so chooses.  I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into  a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view.  Why does this matter?  Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne.  Tell me you understand that there is more than just one autism.  Tell me that you understand that our children will grow up to be adults.  I know many parents mourn the child they thought they were going to raise.  Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have. 

There are times, Suzanne, where I and my family feel lost.  That doesn’t mean we are lost.  There is a huge, HUGE difference.  Throw me a bone, Suzanne.  Tell me that the opinions of autistic adults, no matter how they communicate, matter.  Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow.  Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for.  It’s right there in the name, Suzanne.  Autism Speaks.  Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me.  You can see it here after 26.2 miles of spreading autism awareness.

...after 26.2 miles of spreading awareness...

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from?  My daughter…my autistic daughter who will someday be an autistic adult.  Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne?  What am I supposed to do?  Throw me a bone, please, because you’ve painted me into a corner.

I leave you with this thought that came mind this morning:

1464098_10152091532408755_1227458589_n

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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.

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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.

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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!!!

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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.

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