(Beginner’s Guide to Autism)
Written by a mother of a child with Autism
“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
There you are, happy in your 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 for
“recovery”. You sure as heck didn’t sign up for this and 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 and 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 out
done, there is always the medical intervention maze. That one is almost
There is always some new “miracle” drug out there. It helps some kids,
will it help yours? You will find some if 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. Tapping into those folks is a great life
line to help you get through the day. This really sucks but hey, there
are still good times to be had. WARNING! You do develop and odd sense of
humor. Every so often you get hit by a bullet or 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 in 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.
You’re 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 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 yrs 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 respect and 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 its 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 and 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 in
never normal again, but hey, what fun is normal.
by Susan F. Rzucidlo