A call for editors

As I mentioned Monday, I'm drafting a letter to B's new preschool explaining his hands. I think there is a lot of natural curiosity, and I'd rather answer parents' and childrens' questions in an upfront way, rather than one day walk into daycare and have a teacher ask me if Brody has Downs syndrome in front of everyone. (Yes, that really happened, and that was after Brody had been there for a few months. I was shocked that the assistant director would not be more observant, or you know, read Brody's file).

I found the letter on this website, which I was excited to learn about. The draft on the website, however, is a bit condescending in tone. I've tried to eliminate the condescension, and answer some basic questions about why his arms look the way they do.

I could really use your assistance in editing the letter and getting your gut reaction to it if you received it. In the letter, I do not mention Vacterl, because that would require sharing a lot of information about B's medical status that I'm just not willing to give out to parents of other children (the preschool has it, however). Really, please post your comments. I have permitted anonymous comments just for this reason. I want your honest responses. Here is the letter:

March 16, 2009

Dear Friends,

Our son Brody is a new classmate in the 2’s room at xxxx preschool.

We’re writing this letter because many of Brody’s classmates will probably be curious about his arms and hands, and we want to make sure that everyone is comfortable with his limb difference.

Brody was born with bilateral radial club hands: specifically, he was born without the radius bones in both forearms and without thumbs. Thanks to Shriners Hospital, he has had several operations to try to help straighten his arms (which do not like to grow straight), and in January he had the first thumb pollicization surgery, in which his right index finger was moved into thumb position. In April, he will have the same surgery on his left hand. In an effort to satisfy natural curiosity, I'd like to tell you a little bit about Brody.

First of all, this is the way Brody was born. The doctors do not know how or why, but the latest research shows that Brody’s arms were probably growing this way approximately 35 days into the pregnancy. We’ve had luck explaining this easily to kids as, "That's the way Brody was born. His arms didn't grow quite right when he was in his mommy's tummy." Some children hear the physical explanation and go about their business without second thoughts. Sometimes, though, kids might want more details.

We’ve learned that the easiest way to help a child understand something like this is to remind them how we are all different from each other. We have had success talking with kids (Brody’s cousins and other classmates) by pointing out the obvious differences: hair, eyes, glasses, height, skin color, size of feet, etc. The list is endless. It's also a good idea to explain that Brody’s arms are not broken, painful, shameful, sad or frightening. They are simply different.

While Brody’s arms and hands are unique, Brody doesn't consider them “special” and we do not refer to them as such. Sometimes children will also be concerned about how Brody will do certain things with his unique hands. I usually remind them that he does all the same things they do, just in different ways. Brody has never had radius bones and 10 fingers, so he learns to do everything with what he has (and then shows us how he does it).

Once you get to know Brody, it's easy to forget he has unique hands. He adapts easily. He feeds himself, likes drawing and playing catch, loves Play Dough, washes his own hands, and wants to build towers with legos on a daily basis. We are teaching him that he should be proud of his “new thumbs” (as we are) and he will probably show them off if you ask. There are tasks he gets frustrated with but most of the time he takes challenges in stride and manages creatively.

I just wanted to let you know that we welcome conversation about our son and we look forward to getting to know you and your children.

Sincerely,
x