Friday, December 06, 2013

Wonder


I'm in the final weeks of my pregnancy and while I have no proof, I think this baby is trying to kill me.  Slowly.  Systematically.  Thus my energy is being used very judiciously these days.  Not necessarily the bare minimum, because Christmas and nesting require a little more than the bare minimum, but much more than that and I'm spent.  Which is to say the Special Needs Spotlight is sorta on hold for right now.  I have so many wonderful people who've emailed me and I really want to get back to them, but with the energy crisis around here it's just not happening.  I am however thinking about crafting a less personal, but more streamlined approach to doing the spotlight for the short term...but we'll see.

In lieu of a spotlight today I'd like to bring your attention to a book I read a month or so ago.  It's called Wonder.  Perhaps you've seen it around--it's become quite the popular read lately.  It's a novel geared towards kids about a boy named August.  You learn in the first few pages that August was born with a condition that among other things has also left his face severely disfigured.

I won't describe what I look like.  Whatever you're thinking it's probably worse.  --August



After doing over 75 Special Needs Spotlights now (75!) I've learned a few things.  One is that there are a variety of categories that fall under this general idea of 'special needs.'  Physical disabilities, mental/emotional/behavioral disabilities, medical conditions and any combination of the above.  One pattern that always emerges is that there are special needs you can see and special needs you cannot see.  For a while I tried to figure out which one was better... or worse.  I know mama's of children with Autism and other sensory disorders often talk about feeling judged because their child is having a meltdown in a store as people look on, shake their heads or even make rude comments never realizing that what they're seeing is not a product of poor parenting, but rather a very real, yet invisible-to-the-naked-eye disability.  On the flip side, I (and many other families) know whats its like to have our childrens' disabilities front and center from the second they step onto the playground, with kids and sometimes adults, pointing and staring at say a missing arm, a wheelchair, a treach, or a facial deformity--all while our kids absorb this unwanted attention and struggle to live with this as 'normal' in their lives.

My conclusion is that they're both hard.  Seeing a disability and not seeing a disability both have their drawbacks.  And even their benefits.  There is no way to quantify which is harder, and really it doesn't matter.

However, what we know and live around our house is the reality that comes with a visible difference, and those challenges are significant and real.  I would say that the challenges Lamp faces due to functionality, questions like how is she going to learn to do x, y and z? usually play a distant second fiddle when compared to the social challenges of having a visible difference.  Which is why Wonder really spoke to my heart.  I love that the author writes from August's perspective of what it's like to live with such a visible difference all the time.  His awareness at a tender age and what it's like to be stared at everywhere you go.  But the story isn't just written from August's point of view, you also get to go inside the heads of other characters--the initial reactions of classmates and the unconditional love of a big sister.  I don't want to say too much, but if you have the chance read it.  And if you can, please encourage your kids to read it--particularly the middle school set.  Sometimes books can bring a perspective and empathy to the hearts of kids that they can't get just from being told.

Lastly, some praise for the author.  This the first book for author RJ Palacio and the story came about after an experience she had taking her kids to an ice cream shop.  They saw another child at the ice cream shop who had a severe craniofacial deformity and her 3 year old started screaming and crying.  Instead of engaging the other family in a conversation and trying to calm her 3 year old--she panicked and got out of there as quickly as possible.  You can read the rest of her experience here.  While I'm always trying to educate parents how to react and help their children react when meeting someone who is different, in this instance I'm grateful for the turn of events a bad reaction brought about.  To turn an experience you're ashamed of into a best selling novel by taking the time to really put yourself in someone else's seemingly uncomfortable shoes... well, I think she's a remarkable woman.  And since I doubt you'll read through her entire FAQ section, I'd like to copy one of the questions and answers below:  

What do you hope parents will come away with?I hope parents take heed and do more interfering in their kids’ lives. I’ve talked to so many parents, friends of mine, who kind of stood back and shrugged off their kids’ behavior in middle school, as if being mean were an unavoidable evil that they “hope” their kid would grow out of. I had one dad tell me once about his son, “Well, he doesn’t listen to me anymore so I stopped wasting my time trying to tell him what to do.” To me, that’s exactly when your kid needs you the most: when he acts like he’s not listening anymore. What I think is that deep down inside, we’re so grateful that it’s not our kid who’s being picked on we look the other way when it’s someone else’s kid. So long as it’s not your kid at the bottom of that ladder, you know? But parents have to resist that way of thinking. They need to remind their kids to be kind and do right exactly because it’s the hardest thing to do at that age. 

Yeah.  What she said.

Like most really good books the message of Wonder is universal.  You don't have to have a physical deformity to relate to August, his family or his classmates.  How we treat others is of course the very core of humanity, but it's also the very core of who we are as individuals.  Likewise, how we treat others doesn't just affect them, it affects us.  I'm not saying Wonder is going to change your life, but I think it's a bit like a mirror that shows us our flaws, but also our strengths and will hopefully help us see better who we really are.

Has anyone else read this book?  Have any of your kids read this book?  Thoughts?  Feelings?    

17 comments:

  1. first time poster / long time reader - LOVED this book! We have a 9 yr old with special needs (heart) which are "invisible" to the outsider, but this book spoke to me. My 13 year old read it and loved it. Her sister's heart issues are harder for her than anyone else. I'm ready to hand the book to my 9 yr old to read.

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    1. Sisters are special aren't they?

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  2. Yes, yes! I have commented on your blog in the past in response to discussions about the questions and comments we get about our kiddos as I have a four year old daughter with a craniofacial and a hand difference. It happens that my husband was working with a guy who wife was the publisher of Wonder around the time it was released. He told my husband about it and I read it and loved it. My older daughter has also read it and I completely agree that, whatever our differences (and we all have them, visible or not), it is a great statement about acceptance and love. I did not know the history behind the idea for the book, though. That is awesome! Thanks for sharing. Congratulations on your upcoming new arrival! Rebecca

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    1. Rebecca--even though I'm taking a spotlight hiatus, if you're ever interested I'd love to share your story...what a great follow up to posting about this book. And yes--we really all do have differences.

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  3. Anonymous3:19 PM

    Can't wait to read this to Kalvin. I just ordered it on Amazon to read myself first. The story of the author was amazing as well. Loved her questions and answers and how she wrote the book between 12 and 3 am!! Wow-How inspirtional is she. Good luck with the little one. Hang in there. XOXO Kristen at onein1hundred.blogspot.com

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    1. Yeah this author is one impressive woman. I'll be anxious to hear what Kalvin thinks of it.

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  4. Betsy5:32 PM

    I love reading your blog. I am the grandmother of a boy with achondroplasia and is on the autism spectrum. His brother, sister, mom, and I have read this wonderful book and loved it! And so happy so many school classrooms are reading it!

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    1. Betsy--I'm so glad to hear so many classrooms are reading it as well! So great.

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  5. Anonymous7:53 PM

    Will check out the book.
    Unrelated but I think very cool. And no, not spam or porn :-)
    http://www.weather.com/weather-films/shows/i-am-unstoppable/ep06.html

    Alexandra

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    1. Alexandra--haha, thanks for clarifying. And wow! What a great link! Thanks for sharing...

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  6. Ellie8:01 PM

    I loved the book and love even more that my 10 years old loved it along with me, which is rare. There is some criticism for the unfortunate use of the word retard, but all the other thousands of words are great. To me intellectual disability is the ultimate stigma, but not the worse diagnosis.

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    1. Ellie--So glad your 10 year old loved it...I think the fact that this book seems to be speaking so much to kids that age is a great sign. I don't specifically remember the use of the "r" word but I'm guessing it was used by characters who are the type to use it in real life--like the author was trying to make a point. That's my take at least. And I will agree that intellectual/mental disabilities are often among the most discriminated against. That being said, I do believe the Down Syndrome community has a lot of support both within the community and out. Which is a great thing!

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    2. Ellie9:58 PM

      Auggie says it on page 218 of thé hard cover

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    3. Interesting that Auggie is the one who says it...

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  7. loved this book. my only babe isn't yet 2 but it's def one to keep on hand and read to him later.

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  8. Betsy P.9:17 PM

    Both my daughters loved this book, but it particularly affected my 9 year old, Phoebe, who recently has a close friend with cerebral palsy who can't run and play at recess. Phoebe brought this book in to her teacher and asked her to read it to her 4th grade class. Initially the teacher said, I'll just show them the book and suggest that they read it on their own, but Phoebe pestered her every day for weeks and finally her teacher started reading it to her class. The kids all loved it and wanted to do a project on it. An amazing and inspiring book! And congratulations on the new addition. Phoebe always reads your blog over my shoulder and is excited for Lamp to be a big sis! Also she suggests the name Phoebe for the new babe.

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  9. thanks for the reminder about Wonder... it's been on my list for a long while. home stretch for you, mama. so excited for you all and looking forward to the happy news!!

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