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Posts Tagged ‘autism awareness month’

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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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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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.

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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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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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