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He brings me a small stack of cards.

I’m not sure why he doesn’t bring me the whole box of 52, but he doesn’t. He prefers to bring them in smaller batches. It could be that he simply likes the feel of the cardboard in his little hands, knowing that he is in control of all of the pieces in his grasp, or it could be that I’m underestimating him. Maybe he thinks I’ll be more likely to play the game with him if he doesn’t ask for the whole enchilada up front.

I wonder why he picks me for this game. I’m sitting on the couch, in the corner; Sarah Kate occupies the opposite end, and Mr. Andi the love seat. As seating goes, I’m in the corner of the L, and to get to me he had to choose to bypass one of them. I am weary of this game, but it is important to him to play it, and it is important to me, too, because it’s DIY speech therapy. I wonder what he is thinking.

I wonder why, but I can’t ask him, because he can’t tell me.

When Nathan was born, after the initial shock, the one thing I wanted more than anything was for him to be able to talk intelligibly. When people can’t understand someone’s speech, they often make assumptions about intelligence. They make assumptions about that person’s ability to comprehend. Down syndrome already carries the baggage of so many negative assumptions; I want people to understand Nathan, and to know that he understands them.

Communication isn’t just spoken language. I know that. When Nathan brings me those cards, with a twinkle in his eye, a grin on his face, and a confident question (This?), I know what he wants. But what I want to hear instead is, “Momma, would you play this game with me?” Instead of “Mulk?” I want to hear “I want some milk, please” and instead of “Ah-You” I want to hear “I love you.”

But we aren’t there yet.

I’ve been told that day will come. Playing this game with him is simultaneously encouraging and discouraging, because “D says duh” and stands for “duck,” but “Y says yuh” and stands for … “aurn” when it should be “yarn”. “B says buh” and stands for “bed,” but “K says kuh” and stands for “kee-ee” when it should be “kitty.”

During the game, it’s okay. He is happy, because I know what he is saying. Though I encourage him to say the words correctly, I understand what he means. It’s those other times, when my brain is working so hard – often in vain – to understand what he is telling me, what he wants me to do for him, that I am tempted to throw up my hands in frustration and scream.

But he doesn’t do that.

He doesn’t get frustrated. He doesn’t get upset. He just keeps trying to make me understand.

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Sun-Beams is a collection of links to stories, articles, photos, or videos I have come across that I believe will inspire, inform, or encourage you, as well as my favorite photo posted on my other blog, Violet Film, from the past week.

What Scares Me About The ‘Death With Dignity’ Debate – The author so eloquently puts into words what I’ve been feeling.

Pope: break down the stigma burdening those with autism – Pope Francis embraced many with autism, addressing those gathered for a conference on autism at the Vatican

Janet Carr: They used to say ‘they’re never likely to walk or talk’ – Meet the woman who championed a 50-year study of people with Down syndrome (yes, you read that right – 50 years!)

Vote Planned On Tax-Free Disability Savings Accounts – Finally, movement on the ABLE act!

What Happens When They Are Not Cute Anymore? – I’ve wondered myself but never verbalized it; this mom has some thoughts.

Photo of the Week:

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Seven Snippets: Leaps of Faith, Early Risers, and a Boy Who Needs a Home

November 21, 2014

— 1 — I’m going to Edel! The inaugural event sold out last year in a day and a half, and I was kicking myself for months that I wasn’t one of the lucky few who got to attend. When registration opened on Wednesday, I jumped, and it was a HUGE leap. HUGE because I don’t […]

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Is Sarah Kate’s Story Inspirational, or Inspiration Porn?

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There’s no doubt that the two videos RunDisney produced about Sarah Kate were meant to inspire people. The marathon and half marathon are on many people’s bucket lists, and with good reason: they present a challenge, within reach of ordinary people, that require a lot of hard work and willpower to complete. The #WhyIRunDisney video series features many […]

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My Other Last Place Finisher

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He isn’t as famous as his sister, he wasn’t spotted by (nor did he pose for a photo with) a stranger. He didn’t struggle through rehab to get to this point, and I’m not sure he even realized he was going to run until we showed up and pinned a number to his back, but I’m still […]

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Sun-Beams: November 16, 2014

November 16, 2014

Sun-Beams is a collection of links to stories, articles, photos, or videos I have come across that I believe will inspire, inform, or encourage you, as well as my favorite photo posted on my other blog, Violet Film, from the past week. When a Cashier Reminded Me My Son Has Down Syndrome – I doubt I’d have […]

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Seven Snippets: The Littlest Fisherman, Fire Truck Bed Update, Sarah Kate’s Press Coverage, and Other Stuff

November 14, 2014

— 1 — I don’t have much to say about this photo other than Isn’t he the cutest? I’d love to hashtag it with #firstcatch but I’m pretty sure he didn’t catch anything (Mr. Andi took him fishing, and the photo). He looks the fisherman part, though, doesn’t he? — 2 — The fire truck bed has […]

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Saturday’s Race: In Sarah Kate’s Words

November 13, 2014

As I mused last week, Sarah Kate has reached the age now where I feel like, more and more, she needs to be the one telling her stories. It shouldn’t just be me, because I’m not living them the way she is (although one astute reader gave me a great reason to keep going). So […]

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Finish Strong. Never Stop.

November 11, 2014

Seriously, folks. I don’t even know what to say anymore. Sarah Kate made a return to Walt Disney World this past weekend to attempt the Kids’ Mile for the second time (Spoiler: she finished it). If you need to get caught up, read my original blog post about the first attempt here or go watch the […]

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Sun-Beams: November 9, 2014

November 9, 2014

Sun-Beams is a collection of links to stories, articles, photos, or videos I have come across that I believe will inspire, inform, or encourage you, as well as my favorite photo posted on my other blog, Violet Film, from the past week. Mother blogged about son with autism before throwing him off bridge – My heart mourns for […]

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