Wednesday, October 2, 2013

A little perspctive from the back side of the chair

           We all get a little wonky around disabled kids.   Mostly, in good ways. We want to help or be friendly, but don't know what to say or do.  Even other parents of disabled kids. Personally,  I'm terrible- really.   I get so focused on what I am doing that I wouldn't notice a full grown t-rex walking down my sidewalk. Or that I just ran over your foot with FP's wheelchair.  Or that the other parents don't always get why I am staring at their kid's equipment. ( I am always on the hunt for a better equipment for my kid. So, what I am doing is trying to find a logo or brand name to go home and google.  I am really NOT some durable medical equipment creeper, I promise.)
           But, anyways, lots of people want to help but really don't know what they can do.  So I thought maybe a little perspective from the back end of the wheelchair could help.  
            First of all, go ahead ask questions.  Just try to realize what you sound like.   Think like a kid. SERIOUSLY.  Kids say, "Why is she in a wheelchair?"  Or "Why can't you walk?"  Or "what's that thing?" whilst pointing at a piece of equipment.  Simple, direct questions that automatically break the ice and let Feisty Pants speak for herself.  They're all like miniature Zen philosophers with big open minds and hearts. It's very cool and naturally inclusive.  Adults say, "Poor thing. What's wrong with her?"  Nothing, Feisty Pants is a big bottle of awesome sauce who happens to be disabled. What the hell is wrong with you that you say dumb things at thirtyfive?  I actually was once leaving a hospital ER at 2 am with FP, when some complete stranger ran up grabbed both her hands and began calling upon Jesus to protect her at the top of her lungs.  Lovely sentiment. Scared the CRAP out of a six year old who doesn't like to grabbed by STRANGERS. Especially at  2 AM.  Doubly so at 2 am after spending the evening being poked and prodded with needles.
           And on a completely personal note, don't tell me you know how I feel.  Usually, NO you don't.   Until you have sat in an PICU  three hours away from home in a raging snowstorm wearing sandals (because that's the first thing you grabbed when you ran out the door) after 72 hours with no sleep, watching medical personnel do frigging CPR on your baby 2 and a half weeks before her first Christmas, YOU DON'T KNOW HOW IT FEELS.  And I don't know how it feels to prepare my child for a group home because their disability has made it impossible for me to care for them at home. Or how it feels to have a teenage kid with autism have a meltdown in public. Or how it feels to prepare a child for their inevitable death from cancer or SMA.  How those parents ever get out of bed astounds me. All we can do stand back in awe and respect.  How about we all just say "anything I can do to help?"  Chances are, if you can, some parent will  let you know. 
         Oh, and one more thing. Try to just be a nice person. Be a mensch.  We're usually underslept and overscheduled. And overstressed and underfunded. And just like everybody else, we are all just trying to muddle through best we can.  A little bit of random kindness goes a long way.  It makes ANY harried parent's day a little bit easier and it makes the kind person's day a little bit happier.   That's probably a good idea for any situation.  

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