Wednesday, June 16, 2010

In Defense of Hope (and of Faith in Humankind)

I am often discounted, both by people I trust and people that haven’t yet had the chance to earn it.  For some, I lose credibility immediately upon choosing a positive perspective of any given situation over a negative, when the choice presents itself.  It does in nearly everything.  Not that I always choose the rosy glasses – 50/50 when dealing with adults, 70/30 with the under 10 set.  It’s more reflexive than anything.

When I share my small tales of Addie’s fairly rich and connected life at 6 years old with other parents of kids with differences, I am patted on head, told that I ain’t seen nothing yet, essentially that people are evil at worst, clueless at best, when it comes to counting in my child with cognitive, communicative and medical differences.

There are times I offer my stories or my intentions for projects and work related to meaningful inclusion for those with differences, only to get in return the dismissive smirk from parents of older kids purportedly in my same “boat.”  The look (or sometimes actual words) that says, “well, aren’t you darlin’?  I used to think that way before I knew better.  Best of luck when the truth dawns on you, hun!  You’re best to shelter your child from any social or practical expectation outside our world now, but experience will tell you that soon enough.   Carry on with your imaginative play and I’ll meet you in the real world – the disability ONLY world, when you’re ready.” Pat, pat, pat.

I am impotent against this.  I can do nothing.  The reality is that my child is 6 and just finishing kindergarten.  She is a blue eyed, curly-headed blond who beams at any worthy-to-her being  and clearly has some developmental originality to her.  Attention (often mistaken for inclusion) is a reflex for  90% of the older-than-her female population who have ever borne a child or intend to parent one day(this begins at age 8 and on up to 100), and for 30% of the male population in general – which is saying something.  The girl, much like a newborn, is everyone’s business and they often feel compelled to tell me how dazzling her hair is or her eyes are.  She clearly attracts notice and general (albeit surface) positivity at this age and size. The facts are stacked against me.  I can’t help but look like a rube, oblivious to a strong wind behind us, smiling widely in the mistaken belief that we clip along by our own power and worse, that we expect to continue to direct our destiny.

I get the view that we should shrug our shoulders and come to terms with the fact that the world has not evolved with our kids in mind.  I understand the experience, the exhaustion, the disappointment it comes from.  I really do.

But I don’t hold it as fact and it does not guide me. Instead, I choose to believe in people, to believe in children, to not judge based on poor choice of words, or the social slippage of a prolonged glance.  In our family, we hold out after something leaves a bitter taste in our mouths.  We wait.  We wait for the good.  In waiting for the good, we are seen smiling, trusting, expecting.  Maybe the wide-eyed look does imply something short of savvy.  But people, young and old, prefer to rise to expectations over failing to meet them, particularly when they are so elemental to meet.

I have lived that as true, seen it play out.  When a child stares at my beloved because she is different, I can chose any number of responses.  My immediate response shapes what I internalize about the other’s intentions (often not the other way around for me, contrary to standard belief), what my witnessing children internalize.  When a child stares or points, I can fling a bitter retort at the parent , stomp away, or sulk, thus cementing the impression of evil  that was one of my options for perspective: an impression that  would guide my approach to everything and distract me evermore from recognizing genuine interest and intentions towards my child, buried in unfortunate vernacular or differing interpretations of manners.  It leaves a nasty stain, in truth – a stain that would seep and overtake my daughters’ faith in others, as well. I fear this is all too common an evolution of outlook.

This choice to see evil in murkiness puts the other person, no matter how virtuous or even ill-intentioned they may be, in flight or fight mode.  There may be a follow up dig or a retreat.  Either way, if I choose it, I have wasted something and cheated both my daughter and the other human involved.

Or.

I can witness a lingering look, swallow anything that might need swallowing, and turn it into an introduction.  “Hi! I see you are really interested in Addie, can I introduce you?  She has the very same beach towel as you!”…or..” you have gym shoes on, Addie has gym shoes, do you like to run?  Addie, can you show him the sign for “run?”  Yes, now you try…  Yep, she talks. Not with her mouth, but with her hands and a computer.  Computers are cool, huh? Addie, show him your…page…”

Kids greet my daughter by name, genuinely happy for the chance to say hello and get a sign from her, based on these very beginnings.  Often, their parents are impressed and charmed by their child’s nonchalance to difference, which catches on like a virus.  Suddenly, our families are not so hush, hush disparate after all.

These are very kindergarten conversations, I know.  Easy, elementary, basic.  Trickier when you’re talking alternative music, Abercrombie and Fitch, Twilight and beyond.   We get that the gap is as small as it’s ever going to be.

And I’m not always in the mood or mindset to hand out the benefit of the doubt that is so very often withheld from my daughter.  Some days I say nothing.  Some days I walk away with my mind imprisoned  considering  acidic or cathartic zingers I could have hurled, ruminating for hours.  But I don’t hurl anything.  My child and other children – maybe yours - seemingly outside the trajectory, would bear the brunt of my bitter choice to further separate my family from others.

My husband, both my daughters and I, we are willing to work with things as they are. We trust general intentions until we collect enough evidence to contract our faith in any given person or group of people.  We believe and promote the idea that we are connected just because we are human.

I’m not sure that those who dismiss me and my work started out in the same place.  And therefore, I don’t accept their dismissal.  Instead, I worry about – and continue to work for, all children.  Especially theirs.  

http://www.farmerjohncheeseandotherjoy.blogspot.com/

9 comments:

  1. A well thought out, benefit of the doubt way to live.
    Beautiful.

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  2. Terri, Once again, eloquently written and filled with honest truths. I marvel at your skill, power, faith, hope and determination.Your perspective is so insightful and helpful to me. I often think "wwtd~ what would Terri do?"

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  3. From now, I vow to ask myself that same question, Kathy. What would Terri do?
    A truly inspirational post.

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  4. i love this. LOVE it.

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  5. Amen, amen, amen. I am SO glad to see this post.
    Thank you so much for writing. You put it so much more eloquently than I ever could have, however, these thoughts have been swirling around in my head for a very long time. I don't comment often, but I just had to this time.
    LOVE it.

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  6. Very eloquently put. I have felt the same way as our daughter's differences currently don't distinguish her that much from her peers, can others still value my take on the challenges of special needs parenting...and when her differences do make themselves known can I react in a way that helps others understand her better and expand their idea of how to interact with others around them. I know I have a ton to learn and I often fear that the gap is as narrow as it's going to get...that doesn't leave me hopeless or angry but determined and strong.

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  7. I totally agree with your positive thinking! People are naturally curious. Most aren't trying to be rude when they see someone different than them...they are just wondering what exactly makes them different. Inviting them over to introduce and learn more is an excellent way to bridge the gap! Yay!
    Great post.

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  8. Terri,
    I haven't read any of your previous posts but I'm humbled by this one. My two daughters have Spinal Muscular Atrophy Type 1. They are quadriplegics, ventilator and wheelchair dependent. They are also both bright, happy girls. At 12 and 13, they are becoming teen queens...as it turns out, all teenagers are *special*. I get all the eye rolls and attitude that I'm due from the terror I was as a teen.
    My husband and I have always made it a priority to take the girls out in public. Movies, the mall, etc. We are very active.
    But...because I've been pissed off by one too many hillbilly calling them "babies", I've been less than graceful. I've said many a swear word under my breath. My typical routine in public is to be on the defensive. Always on the look out for snot nosed kids who stare or worse, say something mean. I've been so protective of my girls' self image that I've been an ass. Not at all teaching Betsy and Katie anything good.
    Thank you for making me see this,
    Annette

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  9. Terri,
    I haven't read any of your previous posts but I'm humbled by this one. My two daughters have Spinal Muscular Atrophy Type 1. They are quadriplegics, ventilator and wheelchair dependent. They are also both bright, happy girls. At 12 and 13, they are becoming teen queens...as it turns out, all teenagers are *special*. I get all the eye rolls and attitude that I'm due from the terror I was as a teen.
    My husband and I have always made it a priority to take the girls out in public. Movies, the mall, etc. We are very active.
    But...because I've been pissed off by one too many hillbilly calling them "babies", I've been less than graceful. I've said many a swear word under my breath. My typical routine in public is to be on the defensive. Always on the look out for snot nosed kids who stare or worse, say something mean. I've been so protective of my girls' self image that I've been an ass. Not at all teaching Betsy and Katie anything good.
    Thank you for making me see this,
    Annette

    ReplyDelete