"I am often asked to describe the experience of raising a child with
autism --to try and help people who have not shared in that unique
experience to understand it, to imagine how it would feel. It's like this...
There you are, happy in life, one or two little ones at your feet. Life is
complete and good. One of the children is a little different than the other
but of course - he's like your in-laws- and you did marry into the family.
It can't be all that bad.
One day someone comes up from behind you and throws a black bag over your
head. They start kicking you in the stomach and trying to tear your heart
out. You are terrified, kicking and screaming. You struggle to get away but
there are too many of them. They overpower you and stuff you into a trunk of
a car. Bruised and dazed, you don't know where you are. What's going to
happen to you? Will you live through this? This is the day you get the
diagnosis. "YOUR CHILD HAS [AUTISM.]"
There you are in Beirut, Dropped in the middle of a war. You don't know the
language and you don't know what is going on. Bombs are dropping: "Life long
diagnosis" and "Neurologically impaired." Bullets whiz by: "refrigerator
mother. " "A good smack is all HE needs to straighten up." Your adrenaline
races as the clock ticks away your child's chances of "recovery."
You sure as heck didn't sign up for this and you want out NOW! God has
over-estimated your abilities. Unfortunately, there is no one to send your
resignation to. You've done everything right in your life-well
you tried--well, you weren't caught too often. Hey! You've never even heard
of autism before. You look around you everything looks the same, but
different.
Your family is the same, your child is the same, but now he has a label and
you have a case worker assigned to your family. She'll call you soon.
You feel like a lab rat dropped into a maze. Just as you start to get the
first one figured out (early intervention) they drop you into a larger more
complex one (school) .Never to be outdone, there is always the medical
intervention maze. That one is almost never completed. There is always some
new "miracle" drug out there. It helps some kids, will it help yours?
You will find some of the greatest folks in the world are doing the same
maze you are, maybe on another level but a "special-ed" maze just the same.
This really sucks but hey, there are still good times to be had. WARNING!
You develop an odd sense of humor.
Every so often you get hit by a bullet or a bomb, not enough to kill you,
only enough to leave a gaping wound. Your child regresses for no apparent
reason, and it feels like a kick to the stomach. Some bully makes fun of
your kid and your heart aches. You're excluded from activities and functions
because of your child and you cry. Your other children are embarrassed to be
around your disabled child and you sigh. Your insurance company refuses to
provide therapies for "chronic, life long conditions" and your blood
pressure goes up. Your arm aches from holding onto the phone while you are
on hold with yet another bureaucrat or doctor or therapist who holds the
power to improve or destroy the quality of your child's life with the stroke
of a pen. You're exhausted because your child doesn't sleep.
And yet, hope springs eternal. Yes, there is hope. There ARE new
medications. There IS research going on. There are interventions that help.
Thank God for all those who fought so hard before you came along.
Your child will make progress. When he speaks for the first time, maybe not
until he is 8 years old, your heart will soar. You will know that you have
experienced a miracle and you will rejoice. The smallest improvement will
look like a huge leap to you. You will marvel at typical development and
realize how amazing it is. You will know sorrow like few others and yet you
will know joy above joy. You will meet dirty-faced angels on playgrounds who
are kind to your child without being told to be. There will be a few nurses
and doctors who treat your child with the respect and caring that any child
deserves. There will be people sent into your life who will show you concern
and love like few others. Knowing eyes will meet yours in restaurants and
malls, they'll understand, they are living through similar times. For those
people you will be forever grateful.
Don't get me wrong. This is war and it is awful. There are no discharges,
and when you are gone someone else will have to fight in your place. But,
there are lulls in wars, times when the bullets aren't flying and bombs
aren't dropping, flowers are seen and picked. Life long friendships are
forged. You share an odd kinship with people from all walks of life. Good
times are had, and because we know how bad the bad times are, the good times
are even better. Life is good but your life is never normal again, but hey,
what's the fun of "normal?"