Just Do It.

As we’re walking to the car following an after-school speech therapy session, my son abruptly turns right and rushes off toward his classroom door. My protest at this “unnecessary” detour goes unheeded. This boy is clearly on a mission. He opens the door of the classroom and the sounds of singing and guitar-strumming waft out—another student has an after-school music lesson—but my son continues inside, the door closing behind him. I get to the door and open it in time to see my kid place the beads he was twirling into the bin at the back of the room. Then, he turns and heads out of the room again just as quickly. I hadn’t even noticed he was carrying beads, but now his unexpected change-of-course makes complete sense.

I apologize to the music tutor for the interruption and we exit the room, back on track toward the car, but without the beads that belong only at school. There’s another strand of beads waiting in the car, his beads for “home.” These commute to school with us, but stay in the car; if he needs something to spin at school, there’s that bin of fidgets—but these items do not cross the school boundary. Worlds would collide. Read the full post »

He Can’t.

Some days, I see this:

  • He can’t make himself a snack. I have to prepare and supervise every meal.
  • He can’t stomach new foods. I have to cook the same limited menu.
  • He can’t use a knife. I have to cut up his food before he eats.
  • He can’t hang out with friends on his own. I have to hover and facilitate.
  • He can’t shave his face, brush his teeth, or wash his hair independently. I have to take over those tasks.
  • He can’t match his clothes. I have to lay them out for him.
  • He can’t organize his time. I have to micro-manage every step to get him ready for his day.

But, this is also true: Read the full post »

The Crowd-iest Place on Earth

Do you want to test your tolerance for being inadvertently touched, jostled, and crowded by random strangers?

Go to Disneyland in mid-July.

On the “aversion-to-touch” scale, my kid is in the middle. He’ll allow himself to be touched, many times even requests it—a tickle, a squeeze, a wrestle—but it’s got to be on his terms. He has to know it’s coming.

But when you’re winding your way through a massive sea of people—many carrying oversize backpacks and multiple bags bulging with unwieldy souvenirs; others pushing strollers while wrangling toddlers who insist on managing their own larger-than-toddler balloons or stuffed Pixar characters; not to mention the few patrons walking in zig-zag obliviousness while gnawing on large turkey legs or cotton candy—it’s just impossible to keep from being touched.

Monsters Inc 2319“There’s nothing more toxic, more deadly than a human child. A single touch could kill you!” – Mr. Waternoose, Monsters Inc.

There is no “fast pass” around the summer swarms at Disney theme parks. As a family, we are not early risers—at least not the talk-to-others-in-public-and-ride-roller-coasters type of early risers—so getting into the parks before the biggest crowds was not a realistic goal. We went in the afternoons and evenings. Along with half the universe. Read the full post »

Curating the Quirky Life #DisabilityStories

Today, the Smithsonian’s National Museum of American History, the Kennedy Center’s Office of VSA and Accessibility, the National Archives, and many other agencies have been celebrating #DisabilityStories through a Twitter chat, various blogs, articles, and other virtual events.

As I’m surfing around looking at all these interesting sites and stories (see some of the links below), I’ve been thinking about how I could tell our story, museum-style. Museum curators frequently use objects to tell stories. This “material culture” provides physical evidence of the life and culture of a particular place, person, or time.

So, what objects – what kinds of material culture – would I use to curate an exhibit about life with my son? What are the things in our lives that stand out as shortcuts to describe some of what we do each day and how we interact as a family? What would a Quirky exhibit look like? Here’s what I’ve come up with so far:  Read the full post »

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