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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10 Reasons to Give Thanks, 10 Days Before Thanksgiving

It’s that time of year.

Mom, thanks for making me such a lovely princess costume for my very first ‘dress up’ Halloween!

We’re putting away the Halloween costumes (or, in my case, enjoying photos of past ensembles!) and making plans for the upcoming winter holidays. We’re hitting the road and opening our doors. And in the midst of it all, we’re giving thanks.

At the moment, I’m thankful to have 3 guest posts (From Helplessness to Courage: A Sister’s Story at Autism Speaks; Love Takes the Lead: A Story of Struggle at The Bold Life; Becoming Whole at My Autism My Voice) up this week.

And I’m thankful that, even though this week has been a difficult one for Willie, our parents, and me, it has been a time of grace as well.

& I am tremendously grateful for you.

Your readership. Your time. Your lovely, inspiring comments. The ways in which you share from the heart.

And sharing from the heart is what my favorite writers do best. In honor of the coming holiday, I want to share with you a (short, incomplete) list of writers who have inspired me this year.

You can peruse these posts over the next 2 weeks, since A Wish Come Clear will be taking a brief break for the holiday. (Posts resume on Monday, December 3, 2012.)

The writers listed below share stories of special needs with grace, power, and beauty, and I am so glad that they have the courage to do so.

I am thankful for (in no particular order) …

1. Martha Beck, author of Expecting Adam: A Story of Birth, Rebirth, and Everyday Magic (among others)

Recommended Read: Receive with an Open Heart: Giving and Accepting Gifts of Real Love

2.  Kerry Magro, fellow columnist at Autism After 16 and all-around amazing human being

Recommended Read: Goodbye, Hello

3. Priscilla Gilman, author of The Anti-Romantic Child: A Story of Unexpected Joy

Recommended Read: Ernie and Bert’s Mother

4. Kelle Hampton, author of Bloom: Finding Beauty in the Unexpected.

Recommended Read: Tea with Milk and Honey

5. Rachel Simon, author of The Story of Beautiful Girl and Riding the Bus with my Sister (and others)

Recommended Read: Chapter One, The Story of Beautiful Girl

6. Amy Julia Becker, author of A Good & Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

Recommended Read: Ann Coulter, The R-Word, and John Franklin Stephens’ Wise Response

7. Rob Gorski, who blogs at Lost and Tired

Recommended Read: Never Take for Granted

8. Gillian Marchenko, author of a forthcoming book about Motherhood, Down Syndrome, & Surprising Beauty

Recommended Read: Tutu Much

9. Lana Rush, who blogs at Along Came the Bird

Recommended Read: Oh Joy!

10. Ellen Stumbo, who blogs at These Broken Vases

Recommended Read: Defining Moment {A Guest Post}

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What are you thankful for this week? Join the conversation in the comments below!

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