Tuesday, July 19, 2011

He's Not Retarded!

Having a special needs child, I am learning first hand just how
judgmental people can be. In their defense, I can only say that it is
based on their own lack of knowledge or understanding. It doesn't
happen often, but we are faced with it from time to time. My wonderful
husband is a truck driver and away from home for over a month at a
time. Even out on the truck, he has been faced with those lacking

One day when going into a truck stop restaurant to get something to eat,
my husband overheard a small group of truckers talking about autism. It
was during the Autism Awareness month of April. Joe didn't pay much
attention to the conversation until one trucker said that "autism is a
label that professionals have put onto kids whose parents practice bad
parenting skills." Bless my husband! He is a very quiet and thoughtful
man, thinking through his thoughts before speaking. He asked the
trucker what punishment a parent should use to correct a child who makes
no eye contact? What punishment should a parent use to correct a child
who doesn't speak or cannot feed themself? What punishment does a
parent use to stop a child from screaming in terror or pain caused by
the stimuli around them? As my husband continued asking the questions,
going down a list of things we face daily with our son, the truckers got
very quiet. Without saying it directly, they began to understand that
our child is autistic and we face these things as a reality of autism
and not a symptom of bad parenting. By the time my husband was done
eating and leaving the restaurant, the outspoken trucker had filled out
an Autism Speaks donation card that was available at the cash register.

Many times though, it seems that I am a magnet for the outspoken and the
rude. Likely it is due to my nearly always having our son with me.
Unfortunately, I am not as "thoughtful" and quick thinking as my dear
husband. Most of the time, I am silenced by the sheer nerve of people.
I cannot imagine what goes through a person's mind that gives them the
idea that their hurtful comments are both wanted and appropriate. Last
week, I was faced with likely one of the worst I have had thus far.

I took our children to church in Oklahoma City, to the congregation that
has become our family. On the way home, I stopped at a Denny's
restaurant to get lunch before the 80+ mile trip home. The waiter
looked to be in his 40's. Micah was in a "chatty" mood and was very
vocal. When in this mood, he will mimic phrases that he has overheard
or single syllables. On this day, he kept saying "Da-Da" and giggling.
The waiter looked at Micah and said to me, "He talks really good for a
retarded kid his age." I was stunned. What do you say to that? It was
a very uncomfortable moment. I let him know that Micah was autistic.
This waiter then said that I was being snowballed by the doctors. That
the term "autism" was just a nicer way for doctors to say that your kid
is retarded.

Our 5 yr old daughter was with us and after the waiter left the table,
asked me what retarded meant and if Micah is retarded. This was not a
conversation that I was prepared for. Our daughter adores her brother
and is fully accepting of him as he is. I gave her a very simplistic
definition of mental retardation to her and explained the difference
between it and autism. I then reassured her that her little brother had
autism and is not retarded. She and I have talked before about Micah
being different from other kids. She is more than okay with that. In
her words, it is okay - he is just being Micah.

When the waiter returned to the table, Abbie let him know that her
brother has autism. She also informed him that God allowed him to have
it because it makes him special so he can help teach us how to have
unconditional love for others. (Nice to know that she really does
absorb our talks!)

I write of these experiences because there are many who go through this
and don't speak up. As a parent to a special little one, I can say in
all honesty that it is hurtful to have others judge and condemn without
knowledge. Autistic children do not have mental retardation. They are
not dumb. They are not useless and without a purpose in life. They are
not spoiled brats having a temper tantrum. They are not someone to be
hidden away from society.

When Micah is in certain types of lighting, such as when a fluorescent
light is blinking, it causes a pain reflex reaction. Someone once
described it to me as being stung by a wasp inside your head. When you
hear the cries, you can literally hear the pain in his voice. Imagine
being lost in thought to the point of being unaware of others in the
room. Suddenly, you have that pain reflex kick in. Or maybe you think
you are alone and suddenly you find yourself in a place where you are in
sheer terror. Not simply uneasy, but stark intense terror of your
surroundings. Your only means of communication is to cry or scream.
Does this make you a spoiled, undisciplined brat?

Imagine you are in a foreign country where you cannot speak or read the
language. You literally can only make gestures to try and communicate
your needs. Does this make you dumb? Even someone like Einstein would
appear to be dumb in that situation! Just because an autistic child or
adult cannot communicate in the same way that you do doesn't make them
less intelligent.

My heart breaks daily for my son. I am past the stage of blaming myself
for his autism due to being 45 yrs old when I had him. I am past the
point of second-guessing everything that I did during the pregnancy, the
preterm labor issues, and everything. I know in my heart that God would
never have allowed Micah to be autistic if it was not something that He
could use to show His grace and love. Micah has a purpose in life. If
it is God's Will to heal him, it will happen. But, I firmly believe
that one day Micah will be able to stand before others and give his
testimony of what he has been able to do in his life through God's grace
in spite of being autistic.

What I am not past yet is the pain and hurt that I feel when some
unthinking person rips into me in the store because Micah is crying. I
have literally been told to "shut the f-ing brat up" when he was crying
at a store. I have had the snotty comments and judgments made from
people who feel it is their duty to tell me how my parenting fails. I
have had people, like that waiter, make judgments about my son that are
ignorant at best. I thank the Lord that Micah doesn't yet understand
the harsh words of others.