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Posts Tagged ‘Autism Awareness Day’

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.

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Autism

Awareness
Acceptance
Support

Love

***

respect the stim

celebrate neurodiversity

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let’s talk about autism

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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.  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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