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.
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?
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.
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.
What are some of your wishes for autism awareness? Join the conversation in the comments!
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I have appreciated your thoughts and your posts on being a care giver, particularly this past year while my brother was ill with cancer. While it was one of the most difficult times in my life, it also gave me a new perspective on patience and compassion. Whenever things seemed out of my control, your words often served as a reminder that I wasn’t the only one out there trying to get through a seemingly impossible day. Often, in the end, those seemingly impossible days turned into the ones where my brother and I laughed together the most, and looking back, those are the times I cherish. I know I speak for many when I say that we’ve gained wisdom from your site, no matter what the care giving circumstances may be. So thank you, Caroline, for sharing your own personal insight for the rest of us.
Brenda, thank you for this beautiful sharing; I can feel your love for your brother coming through your words. I’m tremendously thankful that A Wish Come Clear offered some support during that difficult time. <3
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[…] the best way to get his authentic smile on camera: I reach over and tickle him just before I snap an arms-length photograph. I know these things, and many […]