![]() |
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.
christinemack 54p · 617 weeks ago
sammichespsychmeds 45p · 617 weeks ago
Karyn · 617 weeks ago
Jim Reeve · 617 weeks ago
MamaSab · 617 weeks ago
Andrea · 617 weeks ago
Jennifer Lloyd-Carney · 617 weeks ago
Sharon · 617 weeks ago
Brenda Tobin · 617 weeks ago
Eileen · 617 weeks ago
Allison Griffeth · 617 weeks ago
Stephi · 617 weeks ago
gretafunk 109p · 617 weeks ago
Dawn Hentrich · 617 weeks ago
amorninggrouch 45p · 617 weeks ago
Sanstrousers · 617 weeks ago
Jennifer Schaefer Gillam · 617 weeks ago
Sheri Beary · 617 weeks ago
Deborah Dennis · 617 weeks ago
Dani G · 617 weeks ago
Jess · 617 weeks ago
patty · 617 weeks ago
Kelly Howell · 617 weeks ago
melbo · 617 weeks ago
Then there is having to contend with the ill informed judgement of others. Stuff them. They know nothing. And until they do, they should just shut up.
Thank you for this.
Jenny · 617 weeks ago
Lucile Hester · 617 weeks ago
mbtb · 617 weeks ago
I have seen too many kids end up in a trauma room, on their way to the OR, and then the PICU, to believe that wandering is a myth. And frankly, no matter how many locks, gates, guards and alarms, kids, especially those on the spectrum, or with other special needs, can spot that 2 sec window when they are able to "escape", and wander. I swear I sometimes think they have a Harry Potter invisibility cloak!
I have had patients escape from an exam room, with me and a parent right there. They get by the therapy dogs in the hallway, my staff at the front computer, and we generally (thank-you God) catch them as they head down the hallway.
Bless you parents who do everything you can think of to keep your children safe!
Rhonda-Marie · 617 weeks ago
Kasey · 617 weeks ago
aliecedrake 1p · 617 weeks ago
Thank you for your words.... They are powerful and true. I hope many more read them.
Lizzy · 617 weeks ago
Nyla Gann · 617 weeks ago
Kari · 617 weeks ago
Molly · 617 weeks ago
RuthAnn Dennis · 617 weeks ago
Miranda · 617 weeks ago
Ashley · 617 weeks ago
Joanne · 617 weeks ago
Corrie · 617 weeks ago
Lizbeth · 617 weeks ago
Kim · 617 weeks ago
My son is still an eloper, and he'll be 18 in July. The last time he took off, I called the police - because I'm worried about him getting hit by a car as he runs willy-nilly, ignoring traffic (which is a problem every single time he gets near the street).
The police tackled him, maced him, cuffed him, threw him in the back of the patrol car and took him to juvenile detention.
Since that time, he has somehow held his shit together enough to just threaten to leave. At 17, if arrested, he would go to an adult lockup - and nobody wants that.
wantapeanut 47p · 617 weeks ago
AutismDogGirl · 617 weeks ago
I just wanted to say thank you so much for writing this! What most people don't realize is it was 4 kids who died last week. I get so sick of reading comments blaming the parent!!!! I hadn't know a OT the big blog blast but I ended up writing a blog post after the death of mikaela about my perspectives as an adult with autism who wanders. I also wrote about the mason alert. People don't realize wandering and bolting is not a behavior problem it is part of having autism! This is a time when those families need support not blame! Please check out the mason alert. You are very clearly a very loving mom. I love your blog and will be adding you to my blog role
Kat · 617 weeks ago
homeschoolinthehills 0p · 617 weeks ago
Katie Mia · 617 weeks ago
It is a dangerous cocktail of caution to ignore or downplay in serious nature. It has become a special interest of mine I have pursued in detail in the last year.
https://www.facebook.com/permalink.php?story_fbid...
Additionally, I recently made a list of 30 safe sites for people on the Autism Spectrum and People who Love them. There are many sites such as this one that would fit that criteria, and some on my list that I am having to reconsider, at this point specific to this issue that I hope will improve in the future.
Some of the obscure resources are likely helpful as they are from people who do not seek out to network with other people, that I have collected as unique viewpoints from off and on the spectrum. :)
http://katiemiaaghogday.blogspot.com/2013/05/30-s...
Katie Mia · 617 weeks ago
Nelba · 617 weeks ago
Jomtie · 617 weeks ago
My children are now 23 and 25 and still live at home, with us supporting them emotionally and financially. We all survived but the stress over the years has been immense. People with NT kids, who never went through this, never had to deal with the emotional fallout of children who can't cope with poor social interaction with peers, whose children were in the most part compliant, who don't still have to intercede when things in their lives go wrong, certainly did not live and do not still live this life of mine!!!
This article made me weep. It brought back all those anxieties and made me so sad that even 20 years on people are still just as judgmental and insensitive as they were when my children were small. Walk a mile in my shoes!!
extremeparenthood 87p · 617 weeks ago