Recommended Reading: Wonder

Wonder, a novel by RJ Palacio, explores life for a fifth-grader with a facial difference.  I am notoriously picky about books written about children with disabilities (probably because so many of them are poorly-written and play into every stereotype) but I found this debut novel quite successful and engaging.

I very much enjoyed this book, I thought it was well-written for a first novel. Sometimes different perspectives can be jarring and ineffective, but Wonder’s worked well. I think it’s the best fictional portrayal of a protagonist with a craniofacial condition that I’ve encountered.  It’s important for children to see people “like them” in the world, whether it’s the imaginary space of a novel or the physical world of connecting in real life.  All serve a purpose.

Because I can’t help but analyze it a bit… A few minor criticisms: the plot was a bit formulaic at times, and for some reason it bugged me that I think no one ever identified the protagonist’s condition as Treacher Collins syndrome. Granted I am more well-versed in that area than the average person, but I’d love to hear the reasoning behind that choice.  Because I know that I, as a late elementary school reader who already knew what Treacher Collins was from What It Feels Like To Have A Physical Disability (by Jill Krementz), I would’ve been all over that omission!

Random House has started the “Choose Kind” blog on Tumblr to raise awareness of anti-bullying efforts.  Check it out and view some of the stories being submitted… and submit your own!  I love their efforts to get young people thinking about this.

 Here is the book trailer (how amazing that books have trailers now?!)

Anyway, read this book.  Not perfect, but definitely an interesting read for all ages.

More Children’s Book Recomendations

Going through my shelf of picture books from my childhood, I found a few other disability-related books that I thought I should share as being important to me growing up with Moebius syndrome:

Why Am I Going to the HospitalWhy Am I Going to the Hospital by Carole Livingston

I remember reading this book over and over as a young child, obviously it spoke to me and my experiences growing up with many medical issues.

I'm the Big Sister NowI’m the Big Sister Now by Michelle Emmert

A great book for siblings of children with medical conditions, but I also remember liking it as a child.

Extraordinary People With Disabilities (Extraordinary People)Extraordinary People With Disabilities by Deborah Kent

Also important to me growing up and beginning to learn about disability history and activism.

Overall, I think it’s really important for children to have access to the larger community of which they are a part.  Pre-internet (!) – at least for me – that mainly came in the form of stories.  Although I would get together with my community once or twice a year, I could read about them every night and feel connected and a part of something larger than myself.

Resources I think are valuable

So… back when I was much, much younger and didn’t have contact with anyone else who had Moebius syndrome, I used books as a way to understand growing up with a disability.  My parents sought out literature involving people with disabilities and I read them over and over and over… I think trying to contextualize them within my own experiences.  Now things are very different, but literature about disabilities is just as worthwhile I think.  Here are some that I like, along with a few movies.

Geekiness and Recommendations, Oh My!

Last week’s New York Times Book Review had a fascinating review of a new book entitled The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son
by Ian Brown. The book is a memoir from a writer whose son has Cardiofaciocutaneous Syndrome (CFC).  For me, I’m always fascinated by writing about disabilities in general… and most especially when it has to do with craniofacial conditions (which is very, very rare!)  I’m thinking through approaching a larger essay project having to do with growing up with Moebius syndrome, so any inspiration I can gleam from other authors who approach the topic is wonderful.

And for the geekiness part of the post, the Italian Moebius Syndrome Foundation has released an iPod app/game that’s filled with information about Moebius!  Hope people who can download it (it’s free!) and spread the word.