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HEY
EVERYONE! I FOUND THIS "LETTER" THE OTHER DAY AND THOUGHT
MAYBE - JUST POSSIBLY - SOME
OF YOU JUST MIGHT SHARE THIS SAME PROBLEM. IT IS A
GREAT "LETTER" THAT IS READ FROM THE CHILDS POINT OF VIEW
AND PERSONALLY, I THINK IT HITS THE "NAIL ON THE
HEAD"!!
SEE
YA! GINA DOLLARHIDE
OR BETTER
KNOWN AS CARTER'S MOM!!! 
Dear Family
and Friends:
I
understand that we will be visiting each other for the holidays this year.
Sometimes these visits can be very hard for me, but here is some information
that might help our visit to be more successful.
As you probably know, I am challenged by a hidden disability called Autism or
what some people refer to as a pervasive developmental disorder (PDD).
Autism/PDD is a neurological disorder which makes it hard for me to
understand the environment around me. I have barriers in my brain that you
can't see but which make it difficult for me to adapt to my surroundings.
Sometimes I may seem rude and abrupt, but it is only because I have to try so
hard to understand people and at the same time, make myself understood.
People with autism have different abilities: some may not speak, some write
beautiful poetry, some can hardly hold a pencil, others are whizzes in math
or have difficulty making friends. We are all different and need various
degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me
want to run away. I get easily frustrated, too. Being with lots of other
people is like standing next to a moving freight train and trying to decide
how and when to jump aboard. I feel frightened and confused a lot of the
time, like you would if you landed on an alien planet and didn't understand
how the inhabitants communicated. This is why I need to have things the same
as much as possible. Once I learn how things happen, I can get by okay. But
if something, anything changes, then I have to relearn the situation all over
again! It is very hard.
When you try to talk to me, I often can't understand what you say because
there is a lot of distraction around. I have to concentrate very hard to hear
and understand one thing at a time.
You might think I am ignoring you, I am not. Rather, I am hearing everything
and not knowing what is most important to respond to. Holidays are
exceptionally hard because there are so many different people, places and
things going on that are out of my ordinary realm. This may be fun and
adventurous for most people, but for me, it's very hard work and can be
extremely stressful.
I often have to get away from all the commotion to calm down. It would be
great if you had a private place set up to where I could retreat. If I cannot
sit at the meal table, do not think I am misbehaved or that my parents have
no control over me. Sitting in one place for even 5 minutes is often
impossible for me. I feel so antsy and overwhelmed by all the smells, sounds,
and people--I just have to get up and move about. Please don't hold up your
meal for me, go on without me and my parents will handle the situation the
best way they know.
Eating in general is hard for me. If you understand that autism is a sensory
processing disorder, it's no wonder eating is a problem! Think of all the
senses involved with eating: sight, smell, taste, touch AND all the
complicated mechanics that are involved with chewing and swallowing that a
lot of people with autism have trouble with. I am not being
picky. I literally cannot eat certain foods as my sensory system and/or
oral motor coordination are impaired. Sometimes, I may even become
nauseated.
Don't be disappointed if mommy hasn't dressed me in starch and a tie. It's
because she knows how much stiff clothes can drive me buggy! I have to feel
comfortable in my clothes or I will just be miserable! Temple Grandin,
a very smart adult with autism, has taught people that when she had to wear
stiff petticoats as a child, she felt like her skin was being rubbed with
sandpaper. I often feel the same way in certain clothes.
When I go to someone else's house, I may appear bossy and controlling. In a
sense, I am being controlling because that is how I try to fit into the world
around me (which is so hard for me to figure out!) Things have to be done in
a way I am familiar with or else I might get confused and frustrated. It
doesn't mean you have to change the way you are doing things just please be
patient with me and understanding of how I have to cope...mom and dad have no
control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves
feel more comfortable. The grown ups call it "Self regulation," or
"stimming'. I might hum, flick my fingers in my face; repeat things over
and over or any number of different things. I am not trying to
be disruptive or weird. Again, I am doing what I have to do for my brain to
adapt to your world.
Sometimes I cannot stop myself from talking, singing, or partaking in an
activity. The grown ups call this "perseverating" which is kind of
like self regulation or stimming. I do this only because I have found
something to occupy myself that makes me feel comfortable, and I don't want
to come out of that comfortable place and join your hard-to-figure-out-world.
Perseverative behaviors are good to a certain degree because they help me
calm down. Please be respectful to my mom and dad if they let me
"stim" for awhile as they know me best and what helps to calm me.
Remember that my mom and dad have to watch me much more closely than the
average child. This is for my own safety, preservation of your possessions,
and to facilitate my integration with you.. It hurts my parents' feelings to
be criticized for being over protective or condemned for not watching me
close enough. They are human and have been given an assignment intended for
saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is
turned into a busy, frantic, festive place. Remember that this may be fun for
you but it's very hard work for me to conform. If I fall apart or act out in
a way that you consider socially inappropriate, please remember that I don't
possess the neurological system that is required to follow your rules.
I am a unique person--an interesting person. I will find my place at this
celebration that is comfortable for us all as long as you'll try to view the
world through my eyes!"
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