Friday, December 06, 2013
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?