A Day in Dev’s Shoes

A few weeks ago, I was bouncing around the internet, avoiding annoying memes and scanning through articles about disability and I came across an article that I cannot find right now, but it was about a therapist who was trying to teach empathy to non-disabled people by limiting their movement and making them walk, limp or roll for a day in a disabled persons shoes. This article, obviously has stuck with me and made the tiny little gears in my brain to spin and go into overdrive, it made me think about a day in Devlin’s shoes, what it would be like.
Imagine a day where you are unable to do more than roll around, lift your head and fling your arms about in an uncontrolled manner, sometimes you have the dexterity to actually control your arm movement, mostly to reach down and yank your diaper off. You don’t have the ability to communicate verbally, unless it’s a yell, a laugh, a scream or making noises that really have no meaning but your Mom has decided that they have meaning, and she may be wrong, she may be right. She doesn’t know because you don’t have a way of saying ‘Yeah Mom, that’s totally what I meant!’
So you wake up and you can’t just get out of bed because there is a safety gate that your Dad built on your bed to keep you safe and prevent you from rolling out of that bed. The only way you can get out of bed is to call out and get someone to come and get you, which might mean you have to really scream and yell because at the moment they are engaged in something or can’t hear your sweet little babbling.

You have to use a diaper because like the rest of the muscles in your body you don’t have control of the muscles that prevent you from being incontinent. So you need someone to change your diaper, and to be honest, first thing in the morning people are not always the most pleasant or excited about changing a fecal filled diaper before they’ve even fully opened their eyes, let alone had their first sip of tea.
Getting fed is again a crap shoot. You may get what you want, you may not. Mom tries to figure out what you want, and she tries to give you all the options you can, but again it all boils down to limited verbal ability to communicate.
Then getting dressed is again a moment of someone else figuring out what you want to wear and then putting it on you.
A day in Devlin’s life can be summed up by simply saying that self expression is non-existent, you don’t have a choice on almost everything. You need someone to do the most basic of actions for you and privacy is a thing of myth.
All in all I would think that this would be so frustrating and rage inducing, but instead my little guy is a bundle of smiles most of the time.

Don’t get me wrong, he has a temper and there are a few times each day when it comes out and he makes life pretty loud and unbearable for the rest of us. But we all have those moments, and for us we ususally tell who ever it is that’s pissing us off what they’ve done and then we get over it. Dev on the other hand can’t do that, so he lets us all know he’s pissed. And honestly, I think he’s entitled to a bit of anger every now and then.
But I don’t think about those moments. I think about and try to remember the moments when his brilliant smile and contagious laughter dominate the landscape of my life.

Dev Smiles

Mr. Sunshine

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About katastrophes1

Kat is a 20 something girl stuck in a 40 something body. Mom to 3 kids, tormented and amused by 3 crazy dogs. Amateur photographer, self taught crochet junkie. Thinker of crazy thoughts. Where do they come from? Who knows where thoughts occur, they just happen!
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4 Responses to A Day in Dev’s Shoes

  1. golfwidow says:

    I might need t introduce you to my friend Shannon, aka Monty. One of her 19 year-old twins is disabled. http://brain-soup.blogspot.com/2014/02/hey-19.html

    • Thanks for sharing that link with me, I tried to post a comment but my stupid system has decided that I am not allowed right now. I’ll have to try again later.
      Looking at her birthday post and seeing those smiling faces, made me teary eyed.

  2. Thanks for visiting! I just saw your site on my feedjit so I came to visit YOU. 🙂 Also I ♥ Golfwidow. Reading this post was just like being in my own son’s too – and I wanted to take a minute to say I really really really know how you feel. 🙂 That boy of yours pictured is beautiful, and those EYES! He speaks with them, yes?

    • Shannon, thanks for visiting my site also. I had tried to leave a comment on yours, but my lap top decided that it had to give me the big chill, it kept freezing on me.
      First let me say that your kids are so beautiful and handsome, and such a triumph against all the odds and those that were skeptical about their chances. I was reading your 19th Birthday post, and it was a very moving one.
      I’m so glad that Golf Widow shared the link with me, I will keep coming back to read more about the goings on in your world.
      Second, thanks for the compliments on my son. I wish I could take the credit for his amazing eyes, but that’s all his dad.
      He does talk with those eyes, a lot. HE may ‘non-verbal’ but that doesn’t mean he can’t tell me what he wants, and he does…. we call him Little Lord Demando. Sharing is not his strong point. 🙂

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