Thursday, March 12, 2009

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.



Donna Ventimiglia said...

I just read your blog with the letter for Brody's new classmates' parents. Bravo for being so proactive and upfront about his hands and arms. You are right...having worked with kids for a zillion years I know that if kids are curious, give them an explanation they can understand and they usually accept things for what they are. In Brody's case his arms are different than most of theirs...we have three classrooms of special needs students here at Mason and although most of them have intellectual limitations as well as physical, the rest of the kids just accept them for who they are, often going out of their way to help them with tasks they cannot do for themselves. I love you. Donna

Carol said...

I think it is an excellent letter. The tone is appropriate and you state the facts very well. I think it looks great!!

Alina said...

Hi Chris, I've been offline for a while so I'm just catching up on your life.

I'm so glad you're being so proactive and attentive to your wonderful boy. I think your letter is perfect in both tone and content. I love the ideas that you gave them for how to explain Brody's differences. So simple and straightforward. Send it off!

Jacque said...

I think it's just perfect! You are such a good Mom! :)

My Carousel of Progress said...

I love the overall tone of this letter. It is very positive and straight to the point. That demonstrates your not trying to justify things just help with awareness and proactive examples of ways they can do the same. Very well done, I must add. I particularly liked the way you included how B doesn't think of his arms and thumbs as special and emphasized that you do not either. That was a very indirect, but point well taken, way of say please do not treat them as special. Keep it consistent, especially for B's sake. It will help with confidence as well.
I remember the very first blog posting I read from your blog, back in June of last year. It had to do with the guy at Johnny Rockets asking you ""Is he handicapped?" and you wanted to say...No. Are you? That was great and personifies that "normal" is all relative and B is perfectly normal! :)

Hef said...

Perfect. GREAT idea!

Nicole said...

I think your letter sounds fantastic!
The tone isn't condescending at all!

Christine said...

Thank you everyone! Your support makes me smile and grin and sometimes misty. xoxo

Anonymous said...

I LOVE that letter. Did I ever tell you about the time a store clerk asked me if Benji was "retarded" when she saw his braces? I refused to shop there for about- oh two weeks! Lori

Tracy said...

Very good letter. I haven't had to explain Maggie's hand yet. Most people tell me they never notice. Either that's true or they lie.

Stacy and Jon said...

Chris, who among your blog-followers could possibly be a better writer than you are? (Well, Megan in NY maybe...). Of course your letter is perfect! By the way, Gemma has never noticed or commented on Brody's hands or arms. The cast worried her, though, and she was careful with his right hand because of it. Hope you and Brody like the new daycare!

SaRaH said...

Girly, Maybe you should stop this silly law stuff and go into difficult letter writing. Because you ROCK IT. I'm so proud of you. You're just the best mama around. Love you.

SaRaH said...
This comment has been removed by the author.
Dayna said...

It is a beautiful and eloquent letter. Bravo!

Sheila said...

Popped over here from CDAN bc I recognized adorable Brody. His picture just about melted my heart when I saw it on there a while back.
I've now read a bit of your blog and think I've gotten enough information to know that you are a great mother, and Brody is very lucky.
I hope his first day at daycare is wonderful.
And your letter is spot on!

Christine said...

Lori, Tracy, Stacy, Sarah, and Sheila,
Thank you for your encouragement and support.

Today is day one of new preschool. Keep your fingers crossed!