Thursday, June 21, 2012

Get Bent

Every family has their own sayings and euphemisms.  It's just the way it goes.  Team Logan has our fair share of inside jokes, phrases and memes as two adult geeks and one burgeoning one could possibly have.  One such "Loganism" is the phrase "don't get bent out of shape".  Meaning of course, to not get upset over something trivial or nonsensical.  Sean and I use this one a lot, usually in jest.  It's a colloquialism that has served us well over the years;  a handy little phrase that keeps us from being too serious about things that truly don't matter.  We can observe the issue, make note of it, even make a commentary on it.  However, the edict is there:  don't let whatever it is warp your sensibilities or get you riled up.  It isn't worth it.

I've had my self control tested a lot lately.  Unfortunately, that would be life.  Most of it, as the saying goes, is not worth getting bent out of shape over.   As time has gone on, I have learned that most of what life throws at you belongs in this category.  There is a lot to be concerned about these days, that is true.  However, you have to really select wisely as you'll quite easily worry yourself all the way to the grave.  I don't spend too much time thinking about things like politics or the economy or what my neighbours are up to as I have more important things to concern myself with.  I do worry about things like my house, my little family and especially my kids.  When it comes to things that are actually worth getting bent out of shape over, they have to top the list.  I will do it too, this contortion of configuration.  You can bet on that.

Some time ago, I wrote The Big Tell about sharing your child's diagnosis with others.  Now that I am looking back and have more time at this special needs parenting thing under my belt, I wish I would have said a few things more.   I've had more than a couple instances in the last few days where someone new has learned of my son and his extra chromosome; I wish I could say that they all went well.  Sadly, this is not the case. 

One of the most common responses to the statement "my son has Down syndrome" is generally well meaning, but actually quite offensive. 

It is "sorry". 

My immediate response is a curt "don't be", because, quite frankly, both participants in the conversation have nothing to be sorry about.  It is not shameful in a "sorry my dog pooped in your lawn" or catastrophic in a "sorry, I didn't realize it was loaded" kind of way.  You didn't give it to him either so there is no possible way that it is your fault.  There is no sorry.  I am not sorry I had him, I am not sorry he has an extra chromosome and I am certainly not sorry that my son is a wonderful huggable little guy that can light up an entire room and has inspired thousands.  Nope.  Not sorry.  You shouldn't be either, so relax.

I ran across a new one the other day and it caught me totally by surprise.  A lady asked me "how will I know that he is understanding what I say to him?"  I really had to pause a minute after that one to choke down the fourteen immediate responses that were, at best, less than charitable.  It was really difficult to keep from saying things like "you'll know from the explosions" or "symptoms may include a mild headache" or "your nose will glow", but I didn't.  Instead I came back with "same as you would any other child...?" and was rewarded with an "oh yeah!"  a few minutes later when he smiled at something she said.  Sometimes they have to learn on their own. 

There is often an accompaniment to The Sorry:  The Somewhat Concerned Blank Look.  I know this face, I have to wear it at work sometimes.  The eyebrows go up and the head tilts to the side as the person waits for what should obviously be an unbridled tsunami of wild emotion.  I will tell you now that it ain't happening.  I do get emotional over my son, but not about my son.  There is a distinct difference.  It is kind of insulting to see and made even more awkward as once again, the look is meant usually with good intentions.  There's another saying I'm reminded of here, something about the road to hell...

The most obvious example of something to get bent out of shape over is an issue that I'm sure some people are "sick" of hearing about.  The Big R, The R Word, whatever you want to call it.  "Retarded". It's funny that the word sick gets mentioned as that is exactly how I feel when you say it.  Sick, as if you'd punched me in the solar plexus.  I've heard it all too:  "I didn't mean it that way", "I used it correctly", "language evolves, it doesn't mean that any more" and so on and so on and so on, ad infinitum, ad nauseum.  It never ceases to amaze me how many different ways people can justify bad behaviour and bigotry.  Language does evolve, so evolve dammit!  Find something else to describe the helplessness that you feel when you lock your keys in your car or how ridiculous your dog looks in a hat.

As a parent of a special needs child, I run into a lot to get bent out of shape over.   It's very difficult sometimes, to keep your composure in the face of what is obviously some new fresh manifestation of ignorance.  I try and take that extra breath, to stop myself from perpetuating the hurt with more and instead to use the situation as a teaching experience.  Sometimes it goes very well,  sometimes it doesn't.  Even if it doesn't offer immediate results, it gives the person on the receiving end the chance to go away and think about it.  If that is all you accomplished with your talk, then you already have a victory, my friend.  That person may never change either, but you can say "at least I tried."

Before I leave you this week, I have one more Loganism I thought I'd share.  It will be of particular interest to those who perpetuate ignorance, who refuse to believe the worth of a person lies beyond their chromosome count, who persist in perpetuating hatred.  To those people I extend a cordial and simple invitation:

Get Bent!

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  1. I read several special needs blogs and a lot of parents, even those whose child has complex and severe medical needs, think that the response "I'm sorry", when they share their child's diagnosis, is offensive.
    I have to admit that is the first thing that come at my mind when someone tell me that their kid has whatever diagnosis. I don't mean that I'm sorry that he/she exists. I truly believe in the "embrace diversity" approach. I'm just sorry for the difficulties and, in the case of certain severe conditions, for the sufferings he/she has to face. I mean that I care.
    I don't want hurt anyone, so please tell me what is the most appropriate response to the statement "my son/daughter has _______".
    I hope that my English is readable, please be indulgent.

    1. I understand that you mean well when you say this... however, after the umpteenth time you hear "I'm sorry" (and most of it from sources that are not as well meaning), it gets to be a bit much. A whole lot in fact.

      Even a simple "Oh... what are the doctors saying?" can make the difference between a tired parent getting their back up and not. "I see", "When did you find out?" "What does this mean?| and the like both acknowledge what the parent is telling you and facilitate further discussion.

    2. Thank you so much for the reply. I'll take your advices.

    3. I personally take 'okay', 'I see', 'I understand', 'uhhuh' and other stuff like that, if you already know what my kid's specific diagnosis entails, and if you don't I'll gladly accept 'I see, and what does that mean?'
      The diagnosis is just one fact about my kid, nothing more, nothing less.
      When my daughter was born all I wanted to hear was 'Congratulations' (with a big pink side of happy, happy, joy, joy), never the dreaded 'sorry'.

  2. I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful.

    Yes, that is about as eloquent as I can get about them.

  4. My daughter is almost 2 and thankfully we have not heard hurtful words said about her {yet}. Though, we have heard 'I'm sorry' before. The first time was leaving the hospital in the elevator. We just smiled and said, 'We're not.' I do understand people may not know what to say. I also think that most, as I probably used to, think that Down syndrome is a burden. I've learned that my daughter's extra chromosome really makes up who she is and I can't imagine her any different, any better. Hopefully others will learn this too.


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