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High Five Poopy! or, why we celebrate everything

25 Mar

This morning, an article was brought to me via The Mighty (which if you’re not following, follow them!) The author of the story, Liz from Our Version of Normal, pointed out one something that happens in the disabled community –

It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better, more desirable version of the child and their disability.

Here, go read the full article, then come back…I’ll wait…

 

Read it?

Okay, let’s go on then.

I found myself totally and completely agreeing with this mother.  This mother who has to feel the pull of one child being more accepted than the other child even in their own special community that should be celebrating both children.  How heartbreaking must that be?  How frustrating that must be.

And yet, people do it to us all the time, even within our own communities.  Your child has autism?  Someone will ask what their savant skill is. They have to have a savant skill, they saw it in the movies. (Spoiler – not every autistic person is “Rainman”.)  People will send you clips of people with autism who also play an instrument amazingly, or draw amazingly, or do something amazingly – as long as that “something” is deemed worthwhile.  (Quoting the entirety of their favorite movie isn’t deemed as amazing.  Nor is the ability to strip down to underwear in 1.2 seconds.)  If your child has Down Syndrome, you are sent clips of other people with Down Syndrome who have become actors, models for Target, etc.  Cerebral Palsy?  Here’s an article of a person with CP going to college and becoming valedictorian.  Is your child blind?  Here’s a news clip of a blind person making it to the top of Mt. Everest!  Missing a limb?  Here’s seventeen athletes who are missing limbs!

Basically, your email and social media sites become a handy way to dump inspiration porn at you.

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And yet…

And yet, as much as people want to throw feel good stories your way, stories of people with similar disabilities doing so much more than your loved one will ever be able to do in an attempt to cheer you up…

…some of them don’t want to hear about your realities.

They don’t want to hear the real life in the trenches stories you have, of sleepless nights, worries, ER visits, screaming fits that last two hours, feeding issues, doctors blowing you off, schools shortchanging your child, the panic attack you had while showering, or poo.

As I told a friend who’s going through her own medical shit (literally) yesterday – “Anyone who doesn’t want to hear poo stories isn’t a true friend.”

Social media loves to gorge themselves on stories of the preemie baby who doctors say may never walk/see/do origami grow up to defy all odds and be a gold medal Olympic champion.  We’ll share the shit out of those stories every day.  But to parents like me, parents who’s child’s most exciting achievement in life this year is pooping five times in a week, those stories just remind us “Not my kid.”

No one wants to hear that.  I’ve been told I shouldn’t limit Maura by my thinking, that she could live independently if we just try hard enough.  Oh sure, Maura may have an IQ of 48 and leaves the doors open in winter and is almost 12 with the mental age of your average preschooler but with less of a vocabulary – but we shouldn’t sell her short with our negative thinking!  Here’s fourteen more inspirational articles about people with disabilities defying the odds!

In the name of love….stop it!

To the section society that is all about celebrating diversity and promoting acceptance, I beg of you, accept us too.  Accept those who aren’t in Target ads, who don’t have a savant skill, whose biggest achievement this month is trying a new food or finally being able to sit up on their own.

Be like my people.  My friends who have the new catch-phrase “High five poopy!”  after I posted that it’s Maura’s new thing to say every time she poops (seriously, five times in seven days this week?  That’s proof that God answers prayers!)  My friends are awesome, and have celebrated every one of Maura’s achievements, no matter how small.  My friend, who comes over to my house and goes to use the hall bath (aka Maura’s preferred toileting spot) and just says “Yeah yeah, I know, no big deal!” as I try to warn her about the current state of it.  (Really, I clean that bathroom constantly…but…Maura.)  My sister, who offered to watch the teens and Maura so I could go to Spain, and was all “Gee, why would you be stressed and need Prozac?” sarcastically as Maura wandered by with a chainsaw (okay, that might be an exaggeration, we don’t own a chainsaw.  But she did try to cut open the watermelon with the butcher knife, same reaction on my part.)  My dear sweet college friends, who’d be all “Hey, it takes some good coordination to start a chainsaw, good job Maura!” if we did have one and she did start it.  My cousins, who’d be all “Yep, she’s one of us.  We love chainsaws too.”, then would let her steer the tractor (because every girl should know how to drive a tractor.)

These people, who accept my anxiety levels and celebrate Maura’s newest skill, no matter what that skill is – these are the people who show true acceptance.  These are the people everyone else should be like.  These are the people who listen to my poo stories, and are true friends.  They don’t tell me I’m selling Maura short, or tell me to try harder to make her appear less disabled.  No, these are the people who “high five poopy” along with us.

And that is true acceptance.

P.S. – please don’t gift us a chainsaw.

 

 

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10 Responses to “High Five Poopy! or, why we celebrate everything”

  1. Darcy Pennington Arnold March 25, 2015 at 1:10 pm #

    Great article, Phoebe! I sometimes think folks with kids with disabilities are the worst in ‘keeping the hope alive’. Instead of accepting who their child is, they keep hoping that somewhere in the future, the Phoenix will rise. I admit, as a grandmother, I was that person. In third grade (this year), I truly accepted that yes, my granddaughter can read, but is growing farther and farther behind. Acceptance; huge word! And ‘high poopy five’:)!!!

  2. Mary C. March 25, 2015 at 1:12 pm #

    Sending you a high five poopy..I totally get it!

    • Suziqueue March 25, 2015 at 2:14 pm #

      My daughter just turned 20 in January and still can’t use a toilet. So I get you in a way some parents just can’t. Accept our children for what they ARE, not what you think they should/could be. After all, they accept us with all of our flaws. We’re not perfect but they don’t care.

      And yes, let’s encourage our children to be the best they can be, but let’s also be realistic about it. To aim for the literally impossible would be to set ourselves up for heartache. Life’s already hard enough without unwittingly making it even worse for ourselves!

      Seriously, my daughter is awesome. She is the happiest, most laid-back person I’ve ever known. And she loves everybody. I think her life motto, if she were to HAVE a life motto, would be KISSES FOR EVERYONE. (Hugs are only for special people, and even then only on her terms.) She can’t speak, she can’t use a toilet, can’t do a lot of the things I take for granted, but I’ve learned SO MUCH from her I can’t even begin to count it all.

      I actually want to be more like my daughter. And if people were to educate themselves and understand special needs children (or at least attempt to), that wouldn’t be quite so surprising to hear.

      Also, it sounds like you have awesome people!

      • Suziqueue March 25, 2015 at 2:15 pm #

        Also, I herped and derped and put that in the wrong place. Whoops?

  3. franhunne4u March 25, 2015 at 2:33 pm #

    – “Anyone who doesn’t want to hear poo stories isn’t a true friend.”
    I think that applies even to the life of people without disabilities.

  4. Helen March 25, 2015 at 4:00 pm #

    I love reading your blog posts, even, or especially those about pooping. I especially appreciate that you are able to write about your family with such a sense of humour, event when you things are trying. I think it’s a good reminder to all of us to lighten up a bit and enjoy the moment.

  5. saracvt March 26, 2015 at 12:40 pm #

    Unfortunately, my husband is one of those people–unwittingly, I think, but he is. He often refers to the girls going off to college. For the eldest, that’s not such a far-off dream, although it may not be at the “regular” time. But for our youngest…I don’t know. I’m willing (oh, yes) to be proved wrong, but I’m betting that I’m not. I think her life path will be in a different direction, & she might need to hold hands as she walks it.
    But for the time, I just smile & nod when my husband talks about college. Let him figure this out in his own time. He’s just not there yet.

  6. Tournesol (Clr) March 26, 2015 at 10:20 pm #

    Great post, had me bobbing my head and it is so true!! I also enjoyed the article at Version ofNormal . May I reblog this post?

  7. Contessa September 16, 2015 at 10:34 pm #

    We give out “poo toilet olives” in our house as a reward .And now that is what they are forever called.

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