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| Andrew loves to explore the world. And we are never far behind. |
We try so hard.
We are honest, open, willing to divulge our deepest regrets,
our highest hopes, our most intimate fears. We do so for many reasons; the most
important, the most worthwhile is to connect with parents and families like
ours and educate those who will – at some point in their lives – encounter one
of our loved ones on the spectrum.
We compromise. We apologize. We make every attempt to consider
everyone’s perspective, even when it’s
not humanly possible to please everyone. Still, we give it the old college
try because God forbid we write about the one thing we know best: Our Lives.
Yet, no matter what we say, no matter what we write about, there’s
always someone waiting in the wings, rubbing their hands together in earnest,
ready to point out our faults, prey on our weaknesses, discount our personal
experiences and twist our truths into something ugly and false and demeaning.
I, for one, have had enough.
Last week autism parent bloggers across the nation
banded together to honor three young children with autism who tragically lost
their lives to wandering. Each one had, in a matter of seconds, managed to
escape their safety nets; all three were later found lifeless in a body of
water.
Their families, already facing the worst kind of
devastation, became the focus of unimaginable condescension, scrutiny, and
judgment from individuals who had no idea what they were talking about.
So we turned on our laptops, logged onto our respective
blogs, and began chronicling our own experiences with elopement, wandering and
bolting in an effort to educate others and empower the victims’ loved ones as
they faced their incredible loss.
And then, once again, it happened.
And then, once again, it happened.
Comments were left that questioned our motivation;
assumptions were made about abuse; fingers pointed at imprisonment; voices
lashed out, accusing us of mistreating, misunderstanding, mismanaging our
children.
We were ridiculed, insulted, ostracized, targeted, and told,
in no uncertain terms, that we were irrevocably damaging our offspring.
And yet, no matter what anyone out there has said, or
continues to say, the truth remains. It’s a funny thing about truth; it doesn’t
go away, just because someone wants it to.
My truth is as
follows:
Your stinging words, your crucifying comments, your unfounded
accusations of abuse have not stopped my child from eloping or wandering or
bolting this week; not once.
Your judgments and finger-pointing and uninformed
assumptions have not made my vulnerable, innocent, little boy safe this week; not once.
Your naïve suggestion to change the way we think about wandering, to allow it to naturally take its course
and watch it resolve before our very eyes has not kept my son from attempting
to run into a busy street filled with cars this week; not once.
Your derogatory deviations from the reality we live each and
every day have not halted my son in his tracks this week, while he made his way
towards a swimming pool that would swallow him whole if only given the chance; not once.
You are not the hands that guide him away from danger; you
are not the arms that grab him before tragedy strikes; you are not the heart
that pounds when you realize how just how close he came to a tragic ending.
You do not live this life of mine.
You do not hold your breath as you guide my child through
weaving crowds, wide open spaces and treacherous terrain known as the outside
world, exhaling only when he is back in the safe confines of a home designed to
deter Fate and Odds from thinking they can get one over on you.
You do not lie awake at night, waiting for fitful sleep to
arrive and grace you with the very nightmares you work so hard to prevent when
you are awake.
You are not the one who knows that safety is just an
illusion, designed to make you think you can finally let your guard down, only
to be faced with the certainty that somewhere, someday the bubble you’ve
carefully constructed will burst and you will spend the rest of your life
haunted that you didn’t do enough.
You do not live this life of mine.
There will be no compromising; no apologies. There will be
no excuses, no desperate attempts to meet anyone halfway. There will be no
explanations that I’m doing a good job, no efforts to convince you that I love
my child.
Unless you are living my life today, unless you are the
literal difference between my son’s life and his untimely death due to
wandering, then you and I have nothing more to discuss.
I am not sorry for the steps I take to keep my son safe; I
do not regret the locks, the stroller, the wheelchair, the gates, the alarms,
the snug embraces.
I do these things so that I don’t have to one day face the
ultimate regret: that I didn’t do enough.
So this is me, elbow deep in my truth. Nothing you can say
about me, or write in the comment section of this or any other blog post I
write will change that.
You do not live this life of mine.
So let it be known: I do not care what you think about the
way I raise, protect, and love my wandering son with autism.
Now you’ll have to excuse me.
