Monday, January 21, 2013


"I don't know how you do it."

This is a sentence I hear often.  "I don't know how..." can refer to a lot in my world:  my son with special needs, my twins, my kids, my job... my life.  I hear it most often in regards to my family; often it's a nod towards Wyatt and his Down syndrome.  I have a few answers for these situations now as after almost two years of hearing this phrase, I've gotten pretty good at the snappy comebacks.  Truth be told, I've also had lots of experience prior to this, being a mental health nurse.  There is nothing quite like being at a party and seeing the inevitable step backward when you mention you work in psychiatry (from everybody... including other nurses).  Caring for the mentally ill isn't everyone's cup of tea, but it's mine and the reaction I get when disclosing this fact is often simultaneously amusing and annoying.  The comment is especially perplexing when it comes from a palliative or oncology nurse as I have absolutely no idea how they do their job, but I digress...  Let's just say I hear "I don't know how you do it" a lot.

Another thing I encounter frequently is the notion that I am some kind of hero or heroic parent.  I'm not.  As much as I appreciate the compliment (and I realize many people don't know exactly what to say sometimes and that, in itself is okay), I am not a hero, expecially when it comes to parenting.  I snap at my kids from time to time and they all have limits set on their behaviour.  Having a child with special needs/choosing to have a child with special needs is not in itself, heroic.  Raising a child with special needs is not either, at least from where I am sitting.  Raising Wyatt is a little different than raising his twin sister, that is true.  Parenting my twins is also different than parenting my eldest child as well.  There are no heroics there.  Just differences.

"I take care of my kids"... What you want, a cookie?

That's why I'm a little puzzled at the next story.

A waiter, in Texas, was called over by a family seated in his section.  They asked to be moved as they did not like the child with Down syndrome seated at a nearby table.  So much so, that they were reportedly heard to say "special needs kids should be kept in special places".  This particular child was described as well behaved and not causing a disturbance (which is pretty awesome, for any five year old).  You can read the story where I first read it, here and here.  The waiter then told the family who made the complaint, who were also regular customers, that he would not serve them.  They then left, apparently giving the Mom of the child a bad look.

The request and subsequent comment are awfully ignorant and abilist, to be sure.  What irks me a little is that this waiter, who did the right thing, is being lauded as a hero.  He is a good person, but I'm a little saddened that we have to make such a big deal out of this.  It shouldn't be, as this sort of bigotry should be met with this kind of response every day.

But it isn't. 

It's very sad, that in our culture, a simple act of decency creates a hero. This sort of response should not be above and beyond what is expected.  It should be done, without thinking.  There is no reason why this type of prejudice should be tolerated.

But it is.

Another server might have been afraid of losing his or her job and therefore might not say anything (in this economy, that kind of thing is totally plausable).  Another might not care at all, who knows?  Regardless, I don't see it as an act of heroism,  I see it as the natural response of an enlightened human being.

I don't consider this waiter, or myself, or any special needs parent, to be heroes.  Perhaps it's my nurse-ness that affects my vision here, but I save that definition for those that do the extraordinary.  We do what we do, because we want to and think that it's right. Nothing more.  Raising my son in a loving family environment is no different than my other two. We do it as he is our child.

A friend posted the following song to our Facebook group.  Written and sung by Jennifer Shaw (whose son has Sensory Processing Disorder) it is a tale of many special needs parents.  Many parts of the video may resonate with quite a few of us.  It is a beautiful, simple song with some lovely imagery.  It's worth a look.  It also sums up what I'm saying here.

I'm not a hero and I'm just like any other parent:  I do the best I can with what I have.  My schedule may look a lot busier than yours, but this is the life that I have chosen.  It's a good life too, full of hope and promise and love.  Sure, there are days that I'd like to think of myself as a "special needs warrior goddess mom", fighting ignorance and intolerance, riding into town on a tiger with a weapon in every one of my eight, capable hands. 

But I'm not. 

We're not extraordinary.  We just love our kids.

I'm not really Durga.  Not.  Well, perhaps before coffee...


  1. My thoughts exactly. Except for the warrior goddess thing, if anything I'm more of a coffee-infused snap-artist.

  2. This hero gig is not all faster-than-a-speeding-bullet-cape-wearing-underwear-over-the-tights-leaping-tall-buildings-in-single-bound without spilling your latte on your boots, y'know. Heroes come in and out of our lives more often than we realize.

    A hero is simply a person who is admired for their courage. The firefighter who races into a burning house, the nurse who holds back her own tears to comfort the sick, the advocate who speaks for those without a voice. Just a day in the life? These actions are heroism with fries and a shake! What about the kid who shares half his sandwich (and we know all about the taboo of sharing food at school) with a classmate who has nothing to eat. It's not for fame and glory. It's just the right thing to do.

    "A strong man stands up for himself. A stronger man stands up for others." Another waiter might have said nothing. That's true, but this one didn't. I don't think he spoke up looking for the attention this story is receiving. It was, as he says, the right thing to do.
    It takes courage to do something against the grain, to stand up and speak out and say "that's not right / fair / appropriate". It's not easy. Nothing worth doing ever is.

    I can't accept that your average, run of the mill life is nothing short of heroic. I think you're selling yourself short, my friend. There is a misguided concept that when everyone is seen as a hero, then no one will be. If everyone found this waiter's actions too common to be newsworthy, how wonderful would it be to live there?

    Don't retire your cape and boots just yet. Besides, how can you be certain that your dragonfly wings haven't played a part in all this?


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