I’m sure you’ve all read Kim Stagliano’s “Why I Can Never Die” on Huffington Post… right?  If not, CLICK HERE to read the heart-wrenching truth of what we autism parents fear most.  When you are done reading Kim’s piece, pop back over here and read my mother’s response to “Why I Can Never Die.”

You can read Kim’s blog HERE, find her on Age of Autism HERE, or follow her on Huffington Post HERE.

From my mother:

MY GOD…HERE WE ARE WONDERING IF AND WHEN OUR GOV’T AND PEOPLE IN GENERAL WILL SEE THE LIGHT RE: AUTISM, YET MANY OF US HAVE IMMEDIATE FAMILY MEMBERS WHO DON’T (WON’T) GET IT!   THE DENIAL, SELFISHNESS, SELF CENTEREDNESS, LACK OF COMPASSION, AND ABILITY TO SIMPLY PUT IT OUT OF THEIR MINDS AND GET ON WITH THEIR HAPPY, LITTLE LIVES, BOTH SADDENS AND ANGERS ME.  

EVERY NIGHT I PRAY TO GOD FOR HELP…NOT JUST FOR MY GRANDSON, BUT FOR ALL THE OTHER CHILDREN AFFLICTED WITH AUTISM.   I ASK GOD, “WHO WILL HELP MY DAUGHTER AND MY GRANDSON, WHEN I AM DEAD?…WHO?”  ”WHO WILL CARE FOR MY GRANDSON, WHEN MY DAUGHTER IS DEAD?”  ”WHO IS GOING TO CARE FOR ALL OF THESE KIDS…1 IN 91 KIDS…WHEN WE’RE DEAD?

I’M GETTING OLD, AND I’M TIRED.   I’M TIRED OF A GOV’T WHICH STANDS IDLY BY, AS 1 IN 91 CHILDREN ARE BEING DIAGNOSED WITH AUTISM.   DO YOU HEAR THAT PEOPLE?   DO THE MATH!   1 IN 91 OF OUR SWEET, INNOCENT CHILDREN, ARE BEING HARMED IN UNSPEAKABLE WAYS, AND OUR GOV’T AND OUR PEOPLE, ARE DOING ABSOLUTELY NOTHING ABOUT IT!

DO YOU EVEN KNOW WHAT THE HELL AUTISM IS?   WELL…..YOU DON’T KNOW…. BECAUSE YOU DON’T WANT TO KNOW…..SO…GO DO A GOOGLE SEARCH.   AFTER YOU’VE DONE YOUR RESEARCH, AND YOU’RE ALL TUCKED IN YOUR WARM, SNUGGY BEDS TONITE, WITH VISIONS OF SUGARPLUMS DANCING IN YOUR HEADS, TRYING TO DECIDE WHAT COLOR LIGHTS YOU’LL PUT ON YOUR XMAS TREE THIS YEAR, IMAGINE IT IS YOUR CHILD WITH AUTISM.   IMAGINE YOUR CHILD SUDDENLY LOSING HIS ABILITY TO SPEAK…TO BE UNABLE TO SAY MOMMY….LOSING HIS ABILITY TO SMILE…TO PLAY WITH OTHER KIDS…IMAGINE HIM WEARING PAMPERS FOR THE REST OF HIS LIFE, AND YOU’RE CHANGING HIM, DAY AFTER DAY, YEAR AFTER YEAR…IMAGINE HIM NEVER EATING OUT AT A RESTAURANT (OR YOU FOR THAT MATTER), WITHOUT THE POSSIBILITY OF A MAJOR MELTDOWN AND PUBLIC HUMILIATION….OR NEVER ATTENDING A REGULAR SCHOOL, NEVER HAVING A GIRLFRIEND OR A WIFE OR HIS VERY OWN FAMILY, IMAGINE HIM NEVER HAVING A JOB, NOT BEING ABLE TO HEAR A BABY CRY OR A DOG BARK…OR A DOORBELL RING WITHOUT EXPERIENCING IMMENSE PAIN…IMAGINE HIM HAVING DEBILITATING MIGRAINES DAY AFTER DAY, YEAR AFTER YEAR…OR HOW ABOUT HORRENDOUS DIARRHEA AND STOMACH PAIN NON-STOP…OR THE EVER POPULAR, NOT SLEEPING AT NITE WITHOUT MEDICATION (WHICH….HELLO?!?… MEANS YOU’RE NOT SLEEPING EITHER).   THE LIST GOES ON AND ON.

NOW, IMAGINE YOURSELF LYING IN YOUR BED AT 3 O’CLOCK IN THE MORNING…AGAIN…AND AGAIN…AND AGAIN….AGONIZING OVER WHO IS GOING TO TAKE CARE OF YOUR BEAUTIFUL CHILD WHEN YOU’RE DEAD.   I REALLY WANT AN ANSWER TO THAT QUESTION, AMERICA…I REALLY, REALLY DO…AND I’M NOT TALKING ABOUT SOME HORRIFIC, STATE RUN, UNDERFUNDED, POORLY STAFFED ASYLUM.

WHO IN THE WORLD, IS GOING TO GIVE UNCONDITIONAL, LOVING CARE, TO 1 IN 91 KIDS, WHEN WE ARE ALL DEAD AND GONE? I WANT TO KNOW!

This entry was posted on Sunday, November 22nd, 2009 at 4:50 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.