Wordless Wednesday (Autism Awareness Day 2013 Edition)

April is Autism Awareness Month, and today (April 2) is World Autism Awareness Day.

I started off this morning watching the sun rise behind the Autism Speaks puzzle piece as I finished my Charity Miles run:

edited AS sunrise

And I ended the day at Florida’s Old Capitol, waiting for the sun to go down so the blue lighting could convey its message. As I waited with families, some affiliated with Parents In Action, who have children on the autism spectrum, I heard about Asperger’s, service dogs for children with wandering issues, 13 year olds who still have meltdowns and who are difficult to restrain because of their size, teachers who take the time to pore over children’s records in order to best educate them, and disabled vets who take on new roles as learning assistants for children with autism. I had barely scratched the surface before we had to part ways. In the midst of all those details, I heard love, the kind that every parent has for their child, the kind loaded with hopes, fears, and prayers. And as always I found families willing to educate me about their journeys with autism. As people come to work tomorrow morning in Tallahassee, I am happy they will see our Old Capitol all dressed up in blue. And I hope awareness and acceptance will have gained just a tiny bit more purchase on the stretched-thin agendas and hearts of our civic leaders and fellow Tallahasseeans.

blue old cap

 (I also really encourage you to read Diary Of A Mom’s post about today’s significance.)

crafty spices

Then The Blue-Haired Gorilla Happened

If you follow my blog at all, you know that I love to use my blog as a platform for worthy causes.

In addition to blogging, I enjoy adding “causes” to the reasons I run. In fact, when I made my Badass Army 2012 Resolution, I customized it by adding this statement: 

I will actively seek out and promote fitness opportunities that do good for causes I support.

Back in July, I started seeing posts on Facebook (and tweets on Twitter) that stated that the miles run, biked, or walked by the individual posting had helped causes through Charity Miles. For example:

When I participated in the Boston 13.1 for Autism Speaks in September, our team learned more about Charity Miles and how the app can be used to raise support (via corporate sponsorship) for various causes via the simple acts of walking, running, and biking (25 cents per mile walked or run, 10 cents per mile biked!

Once I returned to Florida, I began using Charity Miles for all of my workouts. Then I came up with a plan. I would do a workout for each of the Charity Miles causes, and blog about that cause that week (if you’re a blogger, you may be familiar with the hunger/desperation to come up with topics!).

That’s why I did a workout on September 27, 2012 that was dedicated to the ASPCA:

But then the potential for this happened:

Read about how the loser of the #teamluau vs #teambecca October Charity Miles Throwdown for Autism Speaks has to run the difference in miles in a blue-afroed, Autism Speaks jerseyed gorilla suit get-up here.

And I couldn’t resist joining in to help some of my favorite people with a favorite cause.

(But I do feel a little guilty about the diversion from Plan A – I actually sent Luau a DM on Twitter that said “somewhere out there an unvaccinated puppy just shed a tear” – I will get back to you, ASPCA, I promise!)

And then the decision had to be made about which team I would be on, #teamluau or #teambecca?

I am a HUGE Luau fan. After all, he convinced me sight unseen to divert (I see a diversion theme here…) from my 2012 goal of running a 5K in 29:59 or less (the long run training probably actually helped that goal actually but that’s for a different blog) in order to train for a half marathon. When forced to make a decision, and noting that Rebecca is a) from Florida like me (yay!) b) someone I didn’t manage to meet in Boston (not sure how that happened) and c) a fellow mom (like me), I decided I needed to throw my miles in with #teambecca (she’s on the right in the billboard below):

Which gets me to this:

First of all, check out Charity Miles.  You can read Luau’s post explaining it all. Or you can watch this video:

Secondly, if you have been wavering about where, when, and how to start (or resume) a fitness routine, why not use this as your motivation?  Pick a cause you love and go for it. Of course, since the Charity Miles Autism Speaks throwdown is still on for the rest of October, feel free to tweet your miles with #teambecca (or heck even #teamluau) if you are on Twitter!!

Lastly, I guess this quote is more pertinent to the Nature Conservancy Charity Milers:

“The creation of a thousand forests is in one acorn.” ~ Ralph Waldo Emerson

But let’s extrapolate to running, walking, biking for autism:

“The creation a thousand ways to help Autism Speaks is in one mile.”

Why not add yours to the total?

The List

This post is starting today, and, if everything goes according to plan, will be capped off next Sunday by a confirmation from me that I completed the Boston 13.1 Run as an Autism Speaks team member. I don’t plan to write a full post next Sunday (a rarity in the three years I have been blogging weekly) because by that evening I will have run the race in Boston and made my way to New York City. I have roughly 60 hours in the City and plan to squeeze in every moment of BigApple-ness that I possibly can.

On February 14, 2012, I read this post and announced to my husband that evening that the best Valentine’s Day gift he could give me would be an endorsement of my running the Boston 13.1 on September 16. He wisely said yes (not that a “no” would have been anything to me except a minor hurdle!) and the planning began.

There are many reasons why I chose this race, in this place, on this day. I documented three of the biggest reasons in this April, 2012, post. As the precursor to running the race, I want to dedicate each of the miles.

Mile 1:   Mile 1 is dedicated to the Florida State University Center for Autism and Related Disabilities. CARD’s First Words Project provided assessment, support, and services to our family when my son was young and taught me about the pre-verbal developmental signs that may indicate a child has an autism spectrum disorder. And they answered my zillion questions, not to mention empathizing with my spiraling-out-of-control anxiety.

Photo credit: FSU Autism Institute

Mile 2:  Mile 2 is dedicated to the HollyRod Foundation. Admittedly, most of my impression of the HollyRod Foundation’s work on behalf of Autism has been gleaned from reading Holly Robinson Peete’s tweets, and her open letter to Rapper 50 Cent. Those tweets and that open letter were enough for me to know that a) she loves her boy and b) she uses her fame in an articulate and focused way to help others with Autism. That’s enough for me.

Mile 3:  For Thomas. Read his mom’s posts about autism here.

Mile 4:  For Kidlet.  Kidlet is the son of friends. He watches Carl Sagan’s Cosmos on Saturday mornings and he has Asperger’s Syndrome. Of course he rocks.

Mile 5:  For Kyan. Kyan is the son of Mary Foley, who is the Chairperson of Jacksonville, Florida’s, Walk Now for Autism Speaks. Watch the 2 minute video on Mary’s “Why I Walk” post, and I guarantee it will be two minutes well spent.

Kyan

Mile 6:  For Josef, Cher’s son. Cher and I only know each other via Facebook, even though we live in the same town. Josef is 8 years old and has autism; his mom has been so supportive of every single one of my efforts related to autism.

Josef

Mile 7:  Mile 7 is dedicated to Delirious Mom, conductor of her self-described “Crazy Train,” and her daughters. Read about her experiences being the mother of twin girls who have autism here.

Delirious Mom’s Girls

Mile 8:  Mile 8 is dedicated to Giana.  Giana’s grandmother, Christine, became a social media friend of mine through our families’ experiences with Long QT Syndrome. Giana is young and is still having various assessments done.  At this point Giana is believed to have SPD (Sensory Processing Disorder) and is receiving the recommended therapy and is making wonderful progress.

Mile 9:  Mile 9 is dedicated to Boy Wonder, a six year old with autism. I can’t wait to meet his mother, “Jersey,” at the run. That alone will be worth the hundreds of miles traveled to Boston and the 13.1 miles of running. Read her blog; it will only take you a few posts to understand why.

Mile 10:  Mile 10 is dedicated to Carly Dowling. Carly used to be my daughter’s dance teacher but has remained a friend and role model. She teaches children with autism in South Florida. She deserves much more than a mile.

Miss Carly, Teacher and Friend

Mile 11:  Mile 11 is dedicated to “The Menininho.” He is the son of my incredibly resourceful and engaging social media friend, Maya, who blogs about many things, including Marfan Syndrome, at www.marfmom.com. “M” was diagnosed with autism in 2010.

Mile 12:  Mile 12 is dedicated to Temple Grandin, Ph.D. Temple Grandin is an adult with autism who is a prominent author and speaker on the subject of autism. Every time I hear her interviewed, I am blown away by her intellect, her perspective, and the contributions she has made in so many areas.

Mile 13:  Well, Mile 13 and the extra .1, here you are. And I pray that next Sunday by 10:30 am. (race cut off time), that is where I will be too. One family that has gone the “extra mile” and then some is Luau, whose post kicked off this journey and Jess, whose many written-at-4am-to-the-detriment-of-her-own-well-being posts have taught me, encouraged me, entertained me, and motivated me. So for the two of you, for Brooke, and for big sister Katie (and even the dog), this mile point one is for you.

Even the dog “goes blue” to support Autism Speaks

I have only scratched the surface with these dedications when it comes to the people and organizations who have impacted me when it comes to understanding more about autism and becoming an advocate. If I didn’t identify you by name, please know that you and your family matter so much.

And now, a placeholder until next Sunday night, when I plan to report back on my first half marathon:

Photo Credit: FreeDigitalPhotos.Net

 See you next Sunday night!!

 

 

Just For One Day

A blog post popped up on my Facebook today that changed my blog post topic for tonight and how my entire day will go tomorrow. The Communication Shutdown will help raise funds for and awareness of autism worldwide. Jess’s post, which was followed a bit later by its twin post on Luau’s blog, invited us to join her in shutting down Facebook and Twitter communication for one day, in “a symbolic gesture of solidarity and support for those who struggle every day to communicate.”

Why does it matter to me? I do not have a child with autism. I have zero right to claim to have any idea of what it feels like to be part of a family with a member who has autism. BUT, for some reason God has given me a couple of opportunities to have a glimpse into what people facing HUGE challenges feel. One was when I had a “suspicious area in my breast” ten years ago, waited 30 days for the needle biopsy, then arrived for the biopsy and watched the surgeon scratch his head as he performed 11 mammograms to try to find something that wasn’t there anymore (thank God for that valium!). The second was when Wayne “failed” his screening through the First Words Project at the age of 12 months. The screening involves a “pre screen” that is a form filled out by the parent (I completed his when his first birthday picture was taken at the Tallahassee Democrat). It asks questions like, “does your child point to demonstrate something he wants?” For the period between the initial results of the screening (which stated he was below normal for his age) until he was released from the First Words project at the age of two with the status of “must have been just a slow talker; all caught up,” I was on an emotional seesaw teetering between trying to determine how we would pay for years of special therapies, wondering how our family would adapt to deal with a child with a communication disorder, and rejoicing disproportionately with every single tiny advance (like pointing to a desired object).

No, I don’t know what it feels like to be the parent of a child with autism, but I have had a fleeting taste of what it feels like to wonder if autism is going to touch my family, and that has raised my empathy level for parents of kids with autism by about 500%.

Now, about the “no Facebook, no Twitter” part of this.  I described my personal social media approach in this post. Short version: although it has its drawbacks, I love it! Although I don’t feel the need for an extended social media hiatus like many blog about, I have been curious to see if my ability to focus would improve if my social media “stuff” were not at the tip of my fingers on my smart phone.

In addition, it alarmed me a bit when Tenley, whose math text is on cd and who has to request a “real” book and provide a reason for the request, told her teacher that I use our home computer to freelance a lot (true), but then told me that she said it that way “because I didn’t want to tell my teacher you’re on Facebook all the time.”  Ouch. 

That said, here are some things I won’t be able to do tomorrow:

  • Say “happy birthday” to any FB friends who have November 1 birthdays
  • Click “like” to indicate that I am amused by, supportive of, or in some other way feeling positive about someone else’s post
  • Promote this blog via Facebook and Twitter (so please feel free to share it if you liked it!)
  • Check on my daughter’s profile to see who her friends are and what she’s up to

Here are some things I will be able to do tomorrow:

  • Focus more effectively at work without the siren call of social media
  • Get out the door in the morning without being “hair on fire” stressed because I spent so much time on social media that I don’t have time to iron, blow dry, or dress
  • Let any good or bad news sit until Tuesday – and give myself something to look forward to
  • Remind people who see that I am participating in the Communications Shutdown that the world can be frightening and overwhelming to a person with autism (and their family)

See you Tuesday!