To See Beauty First: A Video

Hello and Happy Monday!

Since I’m traveling this week, I’d like to share a video with you in lieu of the usual post. It’s a 10 minute talk I gave as part of the Faith Inclusion Network’s March 2013 “That All May Worship” conference. (I thank Karen Jackson for her wonderful work in organizing the event, and for sending me the recording as well.)

A Wish Come Clear readers who receive posts via email may recall the story I sent out about my experience speaking at the conference two months ago; it’s reprinted below.

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Please pardon the at-times-loud background noise in the recording (but if you’ve read the story, you’ll have a good idea why that’s happening). Enjoy!

This past weekend, I traveled to Norfolk, Virginia for the Faith Inclusion Network’s biannual, “That All May Worship” conference. I was honored to be a guest speaker at the opening banquet, and to lead a breakout session on L’Arche* as well.

At the Thursday night banquet, I was the first speaker to take the stage. The usual shivers ran through my stomach; the usual adrenaline pumped through my veins. But once I started speaking, everything else fell away, and I was able to lose myself in the stories.

That is, until I heard a masculine voice coming from the foyer. It was loud, yelling something I couldn’t distinguish. I thought it sounded angry, but I couldn’t be sure.

I kept on speaking without pause, but inside, I wondered, Who could it be? Are they supposed to be here? What’s going on? I couldn’t see the person, but for a moment, I was afraid. Visions of violence moved through my mind; was it some kind of radical protester, intent on harm? I didn’t dare turn my head to look.

***

But then, as the man and his companions moved toward the center of the room, I realized: here was a man with special needs, coming in late, just making some noise. No big deal. I felt my shoulders relax, and a smile spread across my face. Thank God! It wasn’t any of the terrible things I’d feared. It was going to be all right.

In fact, I actually felt more comfortable giving my talk after that young man came in. Why? He reminded me of my friends at L’Arche (some of whom are wont to purr and shout phrases in Spanish during Catholic Mass). With his arrival, I felt as though I was among family.

Oftentimes I think we get so afraid of what might happen that we are blind to what is happening. We get all worked up about something we perceive as terrible, when in reality, we’re just frightened by our own thoughts, our own imaginings.

***

I wish I’d had the chance to meet that man after I spoke; if I had, I would have thanked him. I wish I could have told him how he helped me, how glad I was that he had come to the event.

As Amy Julia Becker wrote in her recent post, Missing Out on Beautiful, “I feel as though I have been let in on a cosmic secret because when I look at Penny, I see her beauty before I see anything else.” (Amy Julia’s daughter, Penny, has Down syndrome.)

When I read those lines today, I couldn’t help but think of the stranger, the man from the conference last weekend. It’s clear to me now: he was beautiful because he reminded me of those I love.

And love is what gives us the ability to see beauty first.

***

How do you ‘see beauty first’? Join the conversation in the comments!

***

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*L’Arche (French for ‘The Ark’) is a faith-based non-profit that creates homes where people with and without intellectual disabilities share life together.

All Too Familiar: A Story for National Siblings Day

One Tuesday night this winter, I was babysitting my friends’ children, three-year-old Eliza* and one-year-old Mitchell.*

I watch them on a weekly basis, so I have a working knowledge of their routines and habits. But on that particular Tuesday, Eliza did something I didn’t expect.

When she noticed her brother Mitchell getting a little fussy around bedtime, she stepped closer to him and looked into his eyes. He grew still. Then she stepped away, her hands partially covering her face. And then …

Older sister. (Used with permission.)

“Ah BOO!” Eliza exclaimed, moving her hands away from her face in a ‘ta-da’ motion. Her expression was confident; she knew this would make her brother happy. It was a modified version of peek-a-boo, and Mitchell loved it. His face lit up. His laughter overflowed, bubbling together with hers.

I wish I could play that sound for you; if you heard it, you wouldn’t be able to help but smile too.

In fact, if there’s ever an election wherein we as a human race decide on an official sound for delight, I would vote for this: a baby boy and his toddler sister, laughing together.

The sound of siblings, enjoying life together as only they can.

***

As regular readers at A Wish Come Clear know, I have one sibling, my brother Willie. He’s two years younger than I am; he’s brilliant, thoughtful, and hilarious. He’s also on the autism spectrum.

Growing up with Willie meant ‘leaving normal.’ It meant knowing that my brother was different from other kids. It meant learning oh-so-early-on how to smooth over the rough waters Willie would leave in his wake.

I’ll be the first to say that sibling relationships aren’t always easy. Here in the grown-up world, it’s not always peek-a-boo fun and games. Far from it. Being Willie’s sister has meant laughter and love, yes, but it’s also meant pain and loss.

I was there when Willie was diagnosed. In fact, it’s my first memory: playing on the jungle gym in the waiting area of the diagnostic center. Waiting for my mother to return. Her holding me; me not knowing why she had tears in her eyes.

I was there when Willie ran away from home as a little boy. I felt the fear of losing him, and the embarrassment of having the police pull him out of the local duck pond.

And I was there when Willie had violent meltdowns as a young adult; he still struggles to control his behavior. I was there when my only brother became a stranger to me.

***

Baby brother. (Used with permission.)

And young as they are, Eliza and Mitchell aren’t exempt from all this. They may not have to face the challenges of autism, but they will have ugly moments. They will fight. They will resent one another, if only for a time. Even if they love each other, they will probably say, “I hate you,” at least once.

So the question isn’t whether or not they’ll have those moments; they are human, so of course they will. The real question is: what will they do afterward?

Will they forgive? Will they apologize? Will they choose love and acceptance, even when bitterness tempts them?

Will they remember the power of shared laughter, the deep-down connection they’ll always have?

I hope so. Because for all the difficulties that have come with being Willie’s sister, I wouldn’t trade it. Not a chance.

***

Even though we’re all grown up, I still know how to make my brother laugh. Willie loves wordplay, and he’s thrilled whenever I put the ‘wrong’ word into the ‘right’ phrase. “I’ve been dreaming of a wish come … clear!” I say, and he’ll crack up.

And I know 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 more.

There’s so much that we don’t know about autism; so much of my brother’s mind is a mystery. And maybe that’s why I cherish ‘ordinary’ moments with Willie. Maybe that’s part of what makes talking on the phone, going for walks, and playing ping pong together so special.

And perhaps that’s why I had to turn away from Eliza and Mitchell as they played peek-a-boo that night. Maybe that’s why I had to wipe happy tears from my eyes.

I didn’t mean to cry, but I couldn’t help it. If you’d been there, I think you would have done the same. And it wasn’t just the sweetness of peek-a-boo, or the unexpected surprise of seeing Eliza comfort her brother.

The sound of their laughter moved me, quite simply, because it was all too familiar.

***

Are you a sibling? Celebrate National Siblings Day (April 10, 2013) by posting a photo of you and your sib on Facebook! Visit The Sibling Leadership Network’s Facebook group to post and learn more.

The Sibling Leadership Network exists to help siblings of individuals with disabilities navigate the challenges they face as family members. We make sure that they’re prepared to advocate along with their brothers and sisters, and we promote the issues that are most important to their families.

***

Fed up with an ‘impossible’ sibling? Tired of a family situation that may never change?

Pick up I Was a Stranger to Beauty (ThinkPiece Publishing).

*If you don’t have a Kindle, don’t worry! You can use Amazon’s (free) Kindle Cloud Reader.

More New Posts from Yours Truly:

Upcoming speaking engagements – if you’re in the area(s), I’d love to see you there!

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*Names have been changed.

Reflecting Light: Wishes for World Autism Awareness Day

It was just another visit to the Home Depot.

Since we’re renovating our house, my husband visits the store on a near-daily basis.

April 2, 2013

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 World Autism Awareness Day.

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 small, 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.

***

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.

***

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

***

Fed up with an ‘impossible’ person? Tired of a situation that may never change?

Pick up I Was a Stranger to Beauty (ThinkPiece Publishing).

*If you don’t have a Kindle, don’t worry! You can use Amazon’s (free) Kindle Cloud Reader.

More New Posts from Yours Truly:

Upcoming speaking engagements – if you’re in the area(s), I’d love to see you there!

Enjoy this post? Receive posts via email, along with your FREE copy of Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive).