Wednesday, April 26, 2017

Please Don’t Tell My Daughter She’s Special and Other Thoughts On Talking About Disability

As a parent of children with some noticeable physical differences, my family frequently draws attention in public. Some of that attention is welcome; a lot of it, not so much.  As in, if you get out your phone and try to video my kid, we’re going to want to punch your lights out, no questions asked. And, yes, that’s happened. (To be clear, the video part happened, the punching people part was wishful thinking.)

If it feels like parents of children with visible differences harp on the subject of talking about disabilities with kids ad naseum, there’s a reason for that. For a lot of us, the comments and staring don’t feel non-stop, they are non-stop.  You know that one time your child asked in the loudest voice imaginable, “Hey! Where’s her other arm?” That situation is a common occurrence in my world.

Sometimes I just want to stand at a store entrance and shout, “We come to buy toilet paper in peace! Please leave us alone.” If it’s exhausting for me to deal with the questions and the comments as a fully limbed adult, think of how much more frustrating it is for a child to constantly have someone remarking on her physical appearance. To paraphrase Popeye,“She is what she is, and that's all she is." (For the record, we are darn tootin' proud of who she is.)

Dealing with people—both big and little—and their questions is a work-in-progress for us. But here’s what we’ve learned so far: 
  1. Appreciate children’s curiosity.  Kids are naturally curious and uncannily forthright about pretty much everything. When a child sees someone who is different, they often want to talk about it. Children who ask respectful questions deserve respectful answers.
  2. Tackle things head on. Often parents try to ignore their child’s questions or stifle their inquisitiveness with a loud “shhh.” Not only is this ineffective (a curious child can not be deterred and the shush is only likely to draw more attention to the situation, not less) but it also implies that there is something to be ashamed of or embarrassed about. There is nothing shameful about physical or mental differences.
  3. Be forthright and matter-of-fact. When a child asks a question or makes an observation (which frequently is an implied question), answer forthrightly. Often the subject will then become a non-issue. For example: Where is her other arm?  She just has one arm. Just one? Yup, just the one. Why? That’s just how she was born. Oh, okay.
  4. Don’t downplay the difference. Often people try and explain differences by “normalizing” them. You don’t need to do this. Except perhaps for the very smallest children who have no other frame of reference, it is unnecessary and lame to explain that a person having one arm is like another person having brown eyes. Blond jokes aside, no one's hair color ever kept them from being able to open a door. Different isn’t abnormal; it’s just different. Adults may have a hard time grasping this, children don’t.
  5. Find common ground.  Children have so much in common, but sometimes they need a little nudge in the right direction to help them realize that. Ask kids their ages, their grades in school, their favorite subject or tv show.
  6. Don’t say: It's because she’s “special.” Special often gets used as some kind of euphemism for different, but it’s not. When a child repeatedly hears that they are “special” because of their looks, it reinforces the idea that their value is in how they look, not in who they are. My daughter is special not because of her limbs but because of the wonderful person she is.
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Monday, April 24, 2017

Which Books Characters Do You Count as Real-Life Friends?

I went to a writing conference over the weekend. It was an all-day affair and the first one I had ever been to, so I wasn't entirely sure what to expect.  My head was spinning when I left. (This was in part because of the knowledge consumed but also because a fellow attendee was wearing strong perfume, sending my already aggravated allergies into overdrive.)

The day was divided into breakout sessions. You could choose to listen to presentations about craft, marketing or publishing. Anne Perry spoke at some of the craft sessions and she was also the keynote speaker, presenting to the group as a whole after lunch.

Perry writes historical detective novels and has written 89 books, an impressive feat in and of itself. None of those books has ever been out of publication, an accomplishment of significant magnitude. I knew that she was a big name despite the fact I've never read a single one of her books.

She gave a lot of great advice, which she delivered in a soft British accent.  Everything she said sounded so cultured and wise that I instantly wanted just such an accent, too.

Her talk was directed to writers but her words were about life in general, and came from a place of great breadth of experience. She talked about books being friends, first-hand, personal companions that you turn to in times of need and times of joy.

Authors often talk about sending their books out into the world by likening the process of publication to giving birth. A book, once published, is a fledgling that must find its own way in the world. Authors can participate in marketing and book signings and the like, but they can't force public perception or appreciation.

Perry said, "A good book is yours once you read it."

I knew what she meant.

Laura Ingalls, Anne Shirley and Francie Nolan are mine, just as much as they are the author's. I've walked with these women - and they me.

They've seen me through girlhood and college and marriage and children. At each life stage, they've meant something different - but they've always been there. Constant, faithful, sitting on the shelf and in my heart.

I've blubbered so hard during some books that you would think someone in my actual life had died. The sense of loss is real, the emptiness profound.

Some books have petrified me so badly that I've slept with the light on when I was alone.

I can't imagine a life without books. Thank goodness I don't have to.

Which book characters do you count as real-life friends?

Friday, April 21, 2017

Stop Sabotaging Yourself: The Principle of the Second Arrow

I recently heard about the principle of the two arrows. It’s a Buddhist teaching, but it has general life application.

The idea is this:  A man walking through the forest is shot by an arrow. His response to that situation is to shoot a second arrow–at himself–with his own thoughts and words.  Oh, this is so awful. Why do bad things always happen to me? I must be cursed!

The first arrow is the occurrence or the circumstances; the second arrow is our response to those circumstances.

While the first arrow is painful, that second arrow often hurts worse. I overreact by blowing things out of proportion or getting stuck in self-criticism. I knew I shouldn’t have walked through the forest today. I should have gone a different way. (You get the idea.)

The idea that we can’t always control our circumstances but we can control our response is something I had heard before. It’s an adage that gets explained in many different ways. What was new, though, was thinking of an abstract subject, like thoughts, in such concrete terms. Arrows pierce; they penetrate. The result is physical damage. If I wouldn’t pick up a bow and aim the arrow at myself, why am I willing to do it with my thinking? What’s accomplished? What purpose is served?

A while back, I left two of my kids with a babysitter, and then picked up my oldest from school early. I drove in traffic to the children’s hospital, paid to park, and went inside. When we got to the specialist’s office, I gave the receptionist my son’s name.

She looked him up in the computer and ominously said, “Hmmm. What doctor were you here to see?”  I told her. She told me that my appointment was a few weeks out. I told her it was today and handed her the confirmation letter showing the date and time that I had received in the mail. She picked up the phone and called someone to the front desk.

Unbeknownst to me, the doctor was out of town and the appointment had been rescheduled. I was not pleased. The staff apologized, and my son and I left. Trying to salvage the day, I stopped for ice cream on the way home. But instead of just eating my mint chocolate chip and enjoying the unexpected one-on-one time with my son, I was licking my wounds. I kept thinking about how I was going to have to re-do the entire scenario again in a few weeks, and dreading it. 

I was shooting myself with the second arrow.

It’s okay to experience annoyance, frustration, and physical pain. That’s part of life. But we don’t have to double their impact by shooting a second arrow.

Sunday, April 16, 2017

What I've Been Reading Lately: Airplane Reads + Children's Books

One of the best things about reading-besides the actual reading-is the sense of accomplishment that one gets from finishing a book. Listening to an audio book doesn't give me that same sense of satisfaction that I get when I finish the final page and softly shut (or in some cases, slam!) the back cover.

Here's what I've been closing the back cover on lately:

Calico Bush, by Rachel Field - (I read a library copy with the original wood engravings, which was a far prettier cover than the one shown here.) In 1742, young Marguerite and her grandmother leave France on board a ship bound for a French Settlement in America. But disaster strikes aboard the ship and Marguerite finds herself working as a "bound-out" girl or indentured servant to a family headed to an isolated claim on the northern coast of Maine. I liked this book a lot but have unresolved feelings about the ending. If you've read this, let me know what you thought!

Bird Lake Moon, by Kevin Henkes - I really like Henke's picture books (Wemberly Worried and Chrysanthemum being my favorites), so when I discovered that he also wrote chapter books, I knew I needed to read them, too. I originally checked this out as a family read-aloud but ended up just reading it to myself. It deals with some pretty big themes, like divorce and the death of a sibling, but Henke does emotional stuff, and the big feelings that come with it, well.

Hidden Figures: 
The American Dream and the Untold Story of the Black Women Mathematicians Who Helped Win the Space Race, by Margot Lee Shetterly - I haven't seen this movie yet, but it's on my must-see list, especially after reading the book. For anyone living under a rock, this is about the women who were "human computers" and who did the calculations that would send men into space. They were quietly making important advances at a time when society was still segregated and they had to deal with disparities like separate bathroom and lunch rooms. A fascinating and important read. (An interesting side note from the book: When Ghandi's personal doctor came to the US with him, he wasn't permitted to eat in the same restaurant as Ghandi because his skin was "too dark.") 

Friday, April 14, 2017

The Practical Aspects of Living with Limb Differences

Two of my children have limb differences, to varying degrees. Both children have both upper and lower limb differences. One kid uses a wheelchair; the other doesn't. One child wears an arm splint; the other a SMO.

As a parent, one of the hardest things about learning to live with limb differences was that there was a far more discrete pool of people to turn to for answers. When I wanted to know the best brand of sippy cups or strollers when my typically developing son was small, I just asked my friends. But, those same friends were just as clueless as I was about ADLs and limb different assists! (That's not to say that they didn't try. They did.)

Therapists and doctors are a great resource, but the simple fact is that while many of them are very knowledgeable in their field, few of them actually live with anyone with a disability. They see patients in a clinical setting, not in everyday life.

The people who I've found most helpful to talk to about living with a disability are (not surprisingly) the people with the disability and, in the case of children, their parents.

There is a Yahoo or Facebook group for just about every kind of special need. If you're not in one, Google until you find one. Then join. Ask your questions, no matter how "dumb" they are, I bet you'll get answers.

Before we traveled to meet our daughter, I reached out to several other moms who had children with significant limb differences. They recommended using slant boards and U-cuffs and bendy straws. When we traveled to met our daughter, I went with a suitcase filled with bendy straws. I was bumbling along trying to figure everything else out but heck if I didn't have bendy straws. During every water break, I felt empowered. (I'm not kidding, not even a little bit. When your world is changing dramatically, it's nice to feel you have control over at least one thing.)

Here's my Pinterest board for living with limb differences if you need some specific assists.