First Composed
Fall 2001
Imagine
yourself in a grocery store, walking up an aisle stocked in all
the brands you could ask for. You see a woman with a child
sitting in the cart's seat and see that the boy is staring at
you. You smile, but the child does nothing. You turn
away and chose an item from the shelf. You look again at the
boy; he's still staring. The child's companion's back is to
you. You move to your right, then to your left, and see that
the child didn't follow you and you come to the conclusion that he
is daydreaming. You smile.
You
continue your shopping, slowly making your way down the aisle, toward
the woman and child. You hear a high pitched squeal and quickly
look toward the sound. The boy is being lifted out of the cart and
stands on the floor. He starts pointing at the letters and you
think you hear him spelling the word Nestle. You casually step
closer and yes, you hear in his soft voice n-e-s-t-l-e. You are
impressed. The boy doesn't look much older than four years
old. What a smart child, you think. What else is that he's
saying? You can make out 'cookies', but the rest is foreign to
you. Is he speaking another language or something?
The woman and the cart begin walking away, the
boy has moved on only to the next word on the box. You watch the
woman turn around and call to the boy. He doesn't move. She
walks toward him and reaches for his hand, he lets her take it.
She tells him that there are more letters to see down the aisle.
The little boy proudly hollers 3-9-9! The price of the box of
crackers. The woman smiles and asks for a high five, the boy complies.
Then the woman starts walking away, still holding on to the boys
hand. The boy doesn't want to go, he starts screaming and throws
the box on the floor. You look around you and see another woman is
watching the commotion from further away.
You turn back to the woman, she has placed the cracker box back on
the shelf and picked up the child, holding him tightly in her arms.
Her head is against his as he screams over and over. She puts him
back in the cart and continues her shopping, ignoring his cries.
The boy soon settles down and you can see he has put his hands on his
ears and has closed his eyes. Oh my, you think, he's either
spoiled or a pain in the neck! Maybe next time he should be left
at home. You continue your own shopping, remembering only your last
impression of the little boy, and maybe, unconsciously, are you listening for more screams?
Please, don't think this boy
discourteous, unmanageable or plain weird. He is autistic,
and he is my child. I have created this page as the final
step for my personal acceptance of my son. By doing this,
you, my friends and loving family, will do your best to accept it
as well. It will be a long and confusing path you must
begin, but I urge you to try. I took my first uncomfortable
step on its surface August 9th of 2001 when a team of specialists
told me, over piles of paperwork about my son, that Hunter fitted
the criteria of a 'high functioning autistic'. At that
moment, the table I sat at felt a mile wide between myself and
those people. I heard what they had said and I knew what
they were about before I agreed to the meeting. But I
believed my son had only a speech delay, that we were assembled
here to 'rule out the possibility that Hunter was autistic.'
Well, it hadn't been ruled out, it was confirmed; but was I going
to lose my little boy?
Let me answer
that now. NO! I don't like to say Hunter has autism because in
that way, to me at least, it sounds like autism is a disease when it is
not. The best definition I could relate to is that autism
"... is
a neurobiological disorder that affects a person's physical, social, and
language skills. An autistic's ability to interpret and use words,
gestures, and facial expressions are impaired. No one knows what causes
autism. Researchers think that autism may be structural abnormalities of
the brain, a biochemical imbalance in the central nervous system, or
simply genetic factors. This disorder cannot be prevented because nobody
knows what causes it."
Have you seen the
Bruce Willis movie 'Mercury Rising' or watched 'Rain Man' with Tom
Cruise? Both films have a character that is autistic, but both
behave differently. In Mercury Rising Simon did not like to be
touched, he repeated what he heard, he would often drift into his
own 'world' and he'd sometimes rock back and forth. In 'Rain Man'
you may remember that Dustin Hoffman's character, Raymond, could
participate in something Simon could not; Raymond could carry on a
conversation. I want to mention one more film, 'The Boy Who Could
Fly'. Did he look like an autistic child? What does an
autistic look like? If it were only that easy. Briefly, the
autistic character here, Eric, does not talk, he keeps to himself but
tries to reach out, only to be placed into an institution. The
reason I mention this particular film is this, the person Eric tried to
reach out to was able to penetrate his form of autism through
love. That's what I have been doing and I need you to help because
if Hunter was with me 24 hours a day seven days a week, he wouldn't
learn a thing about life.
I mention all
three of these movies because if you've seen them, or any other film
with an autistic character, realized or not, then they may be your only
door to this confusion. In my examples I've tried to list three
different people with three different ranges of this 'spectrum
disorder'. Sitting across from the four women and one man this
past August, they explained to me that autism is like an umbrella, broad
and encompassing. They even gave me a printout of an umbrella with
a highlighted area of where Hunter was believed to be. But I like
a different definition, told to me by a fellow mom with her own autistic
child. She said that autism is a rainbow of beautiful colors. At
the top, red is for 'high-level', diminishing through orange, yellow
green, where her own son is thought to be, thinning through blue, indigo
and then violet. Looking at my copy of the umbrella scale, Hunter appears
to be an indigo, one beautiful shade of the rainbow.
Hunter is a warm,
affectionate and delightful little boy who's main difficulty is using
expressive language. His receptive language (what he can
understand) is very strong, but the expressive side (what he can say)
has not developed normally for a four year old. He also has
problems with taking directions. He has made
critical steps since his use of words disappeared when he was 15 months
old. We had him evaluated by our local Early Intervention Program
(we learned where he was developmental wise compared to other children
his age) and I had his hearing tested. He scored low on
communication but also
below average on fine motor skills. After a three week transition
into a Pre-Primary Preschool, which means Special Education in a soft-hearted
way, Hunter started working with a Speech Therapist and an Occupational
Therapist (for his fine motor and social interaction skills).
Hunter also passed his ear screening test. Hunter thinks
differently, he plays differently, and sometimes he needs a little more
forgiveness and a lot more patience than other children. But he is only a little boy who
needs help preparing for his place in this world. We have to guide
and protect him until he reaches the age, I pray, to be able to function
successfully, without us.
If you are
interested, you'll take the time to visit your local library or search
the Internet about autism in hopes of understanding Hunter on your
own. I have listed no informative books or related links
here. He is just one child of the many that are being helped in
their fight against this baffling disorder. You will find an
immense amount of information, if you take the time to understand.
If your
interested in the Evaluation Process
itself, I have typed it out. I have also added, in its entirety,
the Pre-Primary Educational Assessment Team
Report, condensed by one of the specialists that broke the news, as
well as a copy of one of the Individualized Education Program,
or IEP, done by his teacher and therapists who worked with him in the
classroom. I wanted to include these for my family and friends
that spend time with Hunter because they are very informative, even in
their technical jargon, about Hunter's being. As a guest and
stranger looking for your own benefit, or for simple curiosity, you are
welcome as well.
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