Reflecting Light: Wishes for World Autism Awareness Day

It was just another visit to the Home Depot in the weeks before World Autism Awareness Day. Since we’re renovating our house, my husband visits the store on a near-daily basis.

autism

We were laughing about paint colors (“‘Manhattan Mist’?! That’s just … toxic!”) when I saw them. The blue light bulbs.

I didn’t have to read the signs. I’ve volunteered with Autism Speaks, and written for their blog as well. I knew what the bulbs were for: Light It Up Blue for Autism Awareness.

When I saw that display, I had this sliding sensation in the pit of my stomach; it was as though I could feel time move. It seemed just moments ago that I was a child, fighting with my younger brother Willie over the TV remote, and learning what ‘autism’ meant.

How surreal that autism awareness isn’t a small cause, that autism isn’t a rare diagnosis anymore.

When I was young, I was thrilled to meet one fellow sibling of an individual on the spectrum, one person who could relate. And now, here I was, standing before autism awareness light bulbs in Home Depot.

How quickly things have changed, I thought. A few years ago, we would never have seen something like this. And what will we see in years to come?

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Last year, on World Autism Awareness Day, I wrote about hoping against hope. I wrote about the painful sides of Willie’s autism, the outbursts and aggression. I wrote about how hard it can be, to know so little about the workings of his mind.

What does lighting it up blue mean for me now? It means that I hold on to the specific ways that Willie himself brings light. Because even as we advocate for autism awareness in general, it’s vital that that work is grounded in relationships with people in particular.

It’s easy to get lost in concepts; it’s not so easy to commit to loving and supporting one person.

A concept, after all, will never steal the remote control and then bite your hand when you try to change the channel.

But then again, a concept won’t ever love you back.

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autism sibling

Arms-length, 2012, courtesy of AutismAfter16.com. Used with permission.

Though you may not have met him, my wish on World Autism Awareness Day (Tuesday, April 2, 2013) is that you would be able to glimpse the Willie I know.

I wish I could show you how brilliant he is; he does the best impressions. Once, after a family Lord of the Rings viewing, he stood in front of us, widened his stance, and said, with great intensity and authority: “Leave all that can be spared. We travel light. Let’s hunt some orc.” We held our stomachs and laughed until we cried.

I wish I could show you a brother who counts down the days until my birthday, who sings with gusto and accompanies our parents on the piano when they call to sing to me.

I wish that you would know what a miracle is: your formerly out-of-control sibling playing, ‘Happy Birthday.’

I wish I could show you the sight of his smile as I snap an arms-length photo … oh wait, I can do that.

I can give you the blue of Willie’s eyes, reflecting light.

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What are some of your wishes for autism awareness? Join the conversation in the comments!

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So Much to Celebrate: Thoughts on A Wish Come Clear’s Second Anniversary

Happy Martin Luther King Jr. Day!

Here’s what I’d like to share with you today:

1. A tremendous amount of gratitude. The launch of my new Kindle Single*, I Was a Stranger to Beauty, has been an amazing experience. I’m so thankful to have released this book with ThinkPiece Publishing; Adam Wahlberg and his team have done a phenomenal job. (And remember, sales support a great cause too: 5% of the proceeds from the first 30 days go to L’Arche DC.)

I Was a Stranger to BeautyAnd thanks to your support, the Single debuted at #3 in the Special Needs Memoirs and Special Needs Ebooks on Amazon. 

Going into this launch, I had zero expectations with regards to rankings. With every book I write, my hope is that the story speaks out to you. I hope that it makes you laugh and cry and have more brave days.

And of course I want it to do well. Yet as launch day drew near, I did what most writers do: I simply prayed that it would not be a complete flop. And even if it was, I prayed to keep it in perspective, to remember that real success is in the effort, the attempt, the ‘showing up’.

Given this, it was wild to see that we made the top three in two categories. Just wild. I was giddy, making ridiculous comments like, “Number three! You get a medal for third in the Olympics!”

The ranking was just icing on the cake, though. The substance of ‘success’ was the sense of having dared to put this book out there. It was the beautiful comments from you. It was talking to my parents, and seeing how our family’s struggle was actually helping others.

It was the feeling that this was exactly what I was meant to be doing. It was the same feeling I had as I walked up the stairs to a certain L’Arche home for the first time in 2007. It was the feeling of coming home.

“Faith is taking the first step even when you can’t see the whole staircase.”  – Dr. Martin Luther King, Jr.

*If you don’t have a Kindle, don’t worry! You can read Kindle books with Amazon’s (free) Kindle Cloud Reader. If you have Amazon Prime, you can also borrow the book through Amazon’s Lending Library.

2. Two new guest posts!

My gratitude to Barrie and Tammy for allowing me to contribute to their lovely sites. And thank you to The Speech Ladies, Kristina and Cindy, who ran a special post to announce I Was A Stranger to Beauty.

“Our lives begin to end the day we become silent about things that matter.”  – Dr. Martin Luther King, Jr.

Caroline and Willie

An illustration from my very first book, age 5, entitled, “My Brother.”

3. A revised version of Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive), thanks to my dear friend and designer Tamara Templeman.

This book is my gift to you; feel free to share it with those you love. If you believe that it will serve someone else, pass it on!

“Everybody can be great…because anybody can serve. You don’t have to have a college degree to serve. You don’t have to make your subject and verb agree to serve. You only need a heart full of grace. A soul generated by love.” – Dr. Martin Luther King, Jr.

4. A Wish Come Clear had its two-year anniversary last Wednesday; in the excitement of the launch, I nearly forgot. But two years, 126 posts, and an amazing community? That’s worth celebrating.

For two years, we’ve been sharing true stories together …

and sharing stories is a way of bearing the light.

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.” – Dr. Martin Luther King, Jr.

***

How will you spend the MLK Holiday? Share your thoughts in the comments below!

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*L’Arche is a faith-based non-profit organization that creates homes where people with and without intellectual disabilities share life together. I spent 5 years serving the DC community in various caregiving roles.

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Launch Day: I Was a Stranger to Beauty is Here!

Oh, happy day!

Thanks to ThinkPiece Publishing, my new Kindle Single* is here!

It’s titled I Was a Stranger to Beauty: A Story of Special Needs, Simplicity, My Brother Willie, My Friend Miguel and A New Way of Seeing the World. (I’m fortunate to have a fantastic publisher who shares my affinity for ridiculously lengthy subtitles.)

*If you don’t have a Kindle, don’t worry! You can read Kindle books with Amazon’s (free) Kindle Cloud Reader. If you have Amazon Prime, you can also borrow the book through Amazon’s Lending Library.

***

This book is the story of a family moving through a terribly difficult time, and (eventually) arriving at a place of acceptance and love.
In a way, it’s all of our stories.

It’s the time you got back up … even though you didn’t think you had the strength to stand.
It’s the time you trusted … even though you’d been hurt in the past.
It’s the time you opened your heart … even though you were tired and wanted to go home.

We’ve all been strangers to the beauty in our own lives.
The question is, will we stay that way, or will we learn to open our eyes?

Curious? Watch the video to learn more.

Thank you in advance for taking a moment to …

  • Read the excerpt below. If you like what you read …

  • Buy the book and support a great cause too. As mentioned in the video, 5% of proceeds from the first month’s sales go to L’Arche Washington DC, an amazing caregiving organization that provides homes for life for adults with special needs. Also, please …

  • Share the news with those in your network. (Friends, family, nosy neighbor.)

The excerpt is below; thank you again for your support!

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At root, a pearl is a ‘disturbance’, a beauty caused by something that isn’t supposed to be there, about which something needs to be done. It is the interruption of equilibrium that creates beauty. Beauty is a response to provocation, to intrusion.”

~ Julia Cameron, The Sound of Paper: Starting from Scratch

I’ve always felt a special connection to pearls. They’re my birthstone, true, but it goes deeper than that. Here’s what I love: the idea that an object of immense value can arise from an annoyance. A grain of sand slips into an oyster’s shell, and the oyster’s defense mechanism swirls around it, gradually taking the shape of a pearl. The unsuspecting oyster is provoked by a minuscule intruder, and, over time, that intrusion becomes a thing of beauty. Likewise, my story starts with provocation and intrusion … but in my case, the irritant was much more significant than a grain of sand. It was my younger brother, Willie.

Willie is my only sibling, and he was diagnosed with autism as a toddler. Like most brothers and sisters, we have obvious similarities—a tendency toward obsessive-compulsiveness, a penchant for politeness, highly sensitive natures—as well as some differences. Willie is a gifted musician, someone who can hear a new song a few times and then walk over to a piano and play the melody. He has a photographic memory; he can watch a set of film credits once or twice and then type out the entire list of names on the computer. He’s got a great sense of humor, too, one grounded in purposeful mistakes. He loves to take quotidian phrases such as “A wish come true” and alter them on purpose. “I’ve been dreaming of a wish come … clear!” he’ll say, and burst out laughing. “What about a wish come … blue?” I’ll counter, and he’ll crack up again. When we were growing up, it was always easy for me to make him laugh.

Willie also has a gift for mischief. When he was two, he walked out of the house early one winter morning. My parents panicked at his disappearance, but they soon discovered why he’d vanished: to prance about in the freshly fallen snow. When they opened the front door, he was stomping cheerfully around the yard wearing nothing but a T-shirt and snow boots. When he got older, he’d run away on a regular basis; he was fast, and he had a knack for slipping out of sight. He’d be swimming in the duck pond at the park with policemen trying to coax him out before anyone knew that he was missing. My childhood is peppered with memories of riding in our Volvo with my mom both of us scanning the sidewalks for Willie. The car’s leather seats would stick to my legs as a combination of fear, excitement, and annoyance swirled through my veins. When we’d find Willie at last, his blue eyes would be half-sheepish and half-triumphant.

Buy the book and read on!