Rarely do I preface
anything I write, but I feel it is absolutely necessary here. I am human.
Everything I am about to write about, I am guilty of doing many times before.
Under no circumstances does that mean it is okay. Here it goes…
(JR)
THE WORD.
Everyone knows our family and knows Elijah, knows about his
diagnosis of autism, but there’s another diagnosis that few know about, that
for a year and a half we haven’t shared publicly. We didn’t know how to talk
about it, when the time is right, but that time is now. Waiting any longer is
simply wasting time to make a change.
It was August of 2011, and we were in Iowa City for another
round of tests, tests necessary to complete for Elijah to receive more services
to help him live a productive future. Today’s tests included an IQ test.
Melissa and I had discussed this thoroughly, and knew the possibility of that
word being used. Yet, like being blindsided by a truck, there are just some
things you can’t prepare for. No matter whom you are or how much you’ve
prepared, you just won’t be ready when a doctor says that the IQ tests have
concluded that your first born son is “moderately mentally retarded”.
It stings. It sucks.
It can turn an entire car ride home, three and a half hours, to complete
silence. After hearing that word, there are no words. To this day, it’s still
nearly impossible for Melissa and I to talk about. How exactly do you tell your
friends and family that when you hear the R-word, it stings just as much to
this day as it did that day? That such a horrible word, regularly misused and
flung around with reckless abandon, had been attached to your child for the
rest of his life? How do you get the point across without alienating people?
I’m human; I’ve used the word far too many times in the
past. To me, it seemed innocent enough. I should have known better. The R-word
isn’t an insult; it is a diagnosis, a part of the lives of 200 million
worldwide and their families. It doesn’t hurt the person you are talking to, it
hurts those who battle intellectual disabilities AND the stigma of their
condition every single day of their lives.
I know this isn’t a popular post, but it is one that had to
be written. We’ve waited long enough. Because I never, ever want to have to
explain to my son what the r-word means. Having to have that conversation will
completely break my heart. All you can do is be conscious enough to think
before you speak. Try to avoid it. And if it slips past your lips, think of my
little boy. Think of the sting it causes. A year and a half ago, I decided to
avoid using that word…and I have yet to use it since. If I can do it, you can
do it too. Take a stand for a better
future…take a stand for Elijah. Spread the word to end the word. March 6th.
www.r-word.org
