Shout Backs for Shout-Outs

I'm trying to teach Emerson how to deflect annoying questions about albinism. This is how our teaching sessions have gone so far:

Me: Emerson, where did you get that white hair?

Emerson: Where did you get that white hair?

Me: No, you say, "From the postman!"

Emerson: You say the postman!!

Me: No, just "the postman."

Emerson: Postman!

Me: Great! Let's try it again. Emerson, where did you get that white hair?

Emerson: Where did you get that white hair?

Me: sigh

I suppose we're making progress considering he now walks around the house randomly shouting, "The postman!!" with great glee.

I got the idea to give him some coaching from a recent NOAH webinar called "Stares, Smirks, and Shout-outs" given by a young woman with albinism. She suggested creating a "comeback bank" and helping kids to practice so they can respond quickly on the days they just don't feel like educating every person and entertaining every ignorant question.

Since I am their spokesperson right now, this exercise would be equally helpful for me. Most of the time I do end up entertaining every question or stupid comment due to a combination of feeling obligated and not being fast enough on my feet. Let me be clear that since the boys are still innocent (and clearly adorable in my unbiased opinion) little kids, no one has been purposely mean. While I would like to respond to stupid questions and comments by punching the person in the face or shooting back some searing insult, it just isn't appropriate. Not to mention I have to model for the kids how to be civil and thoughtful citizens - even when we're having a bad day.

During the webinar many participants wanted suggestions of what adults with albinism use for their own comeback banks, but there were not a ton of suggestions. Probably because coming up with standard answers that are effective without being too insulting is a fine art.

If you want to educate someone, you are going to have to give a standard explanation and then buckle down for the numerous questions that will follow. We've tried handing people a business card with info about albinism to get around this, but usually they will follow you and continue to ask questions about what's on the card. Or you find yourself unable to leave (i.e. on a bus, elevator, etc) and there ends up being an awkward silence while they read it and decide how to respond.

On the days you don't feel like talking, the comeback has to effectively and politely shut down the conversation...or else you might as well have started with the education answer in the first place.

If it can make us chuckle about our strange lot in life at the same time, all the better. Hence, the postman.

I know many of my readers are far wittier than me, so I am putting out a call for suggestions to complete our comeback bank. Here is a list of the common remarks/questions we get so far:

Where did they get that white hair?
(I say "The postman." Robbie's suggestion is, "Yo mamma." Feel free to vote on which answer is better, or come up with an even better answer.)

Why do they have such white hair?

I used to have hair that white! (Sometimes they add: Don't worry, it will change when they get older.)

Is that their natural color? Or...Do you dye their hair? (You might think these people are being sarcastic. Let me assure you, they are not.)

Why do they have red/pink eyes?

Are they one of those albinos?

From children, who are the right size to make eye contact and thus focus more on eyes than hair): Why are their eyes so weird?

We don't get this one yet, but apparently it's the most common shout-out that adults get:

Hey Caspar! or Hey Albino!

It may be hard to believe people have so little creativity, but considering some guys once drove by and shouted: "Hey Bookworm!" because I was reading a book on a college campus, I believe it.

Happy Mother's Day

To the world's most beautiful mom

Playlist for the Planet

I've been putting all my extra time and attention toward a new project, so while I play catch up, here is another playlist to share. We are on day one of experimenting with getting rid of the television to save energy and time (aka I don't think TV is evil incarnate), so youtube and internet tv are our only choice.

Pray for us.




(If you have any nature/environmental videos your kids like, please share!)

Thank You!!!

Thanks to your generosity, we collected enough sunscreen to fill a large flat rate box! It's off to Under the Same Sun and then to Africa where it's so desperately needed.

Considering that a bottle of sunscreen costs anywhere from $7-$10, this collection is no small feat. In fact, it cracked me up how many people said, "Do you know how expensive sunscreen is?!"

Uh...yeah. :)

We will continue to collect sunscreen in lieu of birthday and Christmas presents, so keep it coming! For more information about this campaign, click here.

Be True to Your School

These days, I spend most of my time like this:

I have many fascinating and brilliant things to write about (stop snickering), but lately I've been so swamped with three kids and three classes that I just can't get to it. Seriously, I'm so sleep deprived that I developed what I call a "slutter" - a slur and a stutter mixed together. You could arguably add "slut" in there, but that's another story from another time period.

For the most part I love being in school and wish I could be a professional student (unfortunately Robbie curls into the fetal position whenever I say the word "Ph.D.") I'm in no hurry to graduate, but when I have insane weeks like the past couple weeks, I find myself obsessively checking how many classes I have left until graduation. The answer is always the same: too many. 

I spent the first half of grad school at a seminary on the University of Chicago campus in Hyde Park. I loved commuting there for intensives every January, but the commute - combined with major changes that the school made after the recession hit - became too much for me last year. I transferred to an ecumenical seminary in Detroit that I was already attending as a guest student. 

Hyde Park could look rough if you went too many blocks in any given direction, but for the most part it was a gorgeous, affluent campus. Many of my classmates affectionately called our seminary "Hogwarts" after the old gothic building and the old rumpled staff. 

Now I go to school in an old church in downtown Detroit where most of the neighborhoods are rough. I'm only one of a couple non-Christians, which can be frustrating and lonely sometimes. But there are a lot of things I love about the seminary: the energy, the activism, the racial diversity...the groundskeeper whose name really is Willie. 

Last Saturday after class I took some pictures of the Heidelberg Art Project going on next to the school. The shoes represent people living on the street, but you can find better information about it here.

Typical of the area - one abandoned, one beautifully renovated.

While I was at it, I took some pictures of our school. It's no Hogwarts...but it has a magic all its own. 

It's Official - I'm Offbeat

I'm so honored that Miren's birth story was published today on Offbeat Mama! It was fitting to re-read the final lines about struggling to remember my gratitude as I sat sipping a "boy this has been a long day from hell" Oberon. Most days I remember. Some days I need a few extra baby smiles...and a good beer.

What Can They See?

One of the biggest questions I get about the boys and OCA is: what can they see? The short answer is that each person with albinism has varying vision, but generally it's like a low-resolution digital picture.

The longer, much better answer is in this video presentation by NOAH. I'm SO glad this is finally available in a form I can share because the information and pictures are invaluable! It's a little long, but if you want to get the general idea quickly, fast forward to the part that shows visual representations of what a person with 20/20 vision sees compared to what someone with 20/100 or 20/200 vision sees. Emerson's vision at this point is about 20/300 - 20/400 and Fionn is around 20/100 - 20/200.