Sunday, December 23, 2007

A Holiday Letter

This came off my county's autism support group email list, and I really feel compelled to post it here. It really touched me so much! I wish I had the nerve to send it to certain family members. I think all of my good friends (::waving at you!!::) really understand my children well enough to recognize this stuff by now, but there are some new folks in our lives who don't get it yet. Anyway, here it is! I wish I could give credit for the original author, but there was nothing listed with it!

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 neurodevelopmental
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. Others are whizzes in math (Albert Einstein was thought to be autistic),
or may 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. This is why I
need to have things the same as much as possible. Once I learn how things
happen, I can get by OK. 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

If I can not 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 five 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 how.

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. Chewing and swallowing is something 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

Don't be disappointed If Mom hasn't dressed me in starch and bows. It's because
she knows how much stiff and frilly clothes can drive me buggy! I have to feel
comfortable in my clothes or I will just be miserable. 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 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 rock, hum, flick my fingers, 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 doing an activity I
enjoy. The grown-ups call this "perseverating" which is kinda like self
regulation or stimming. I do this only because I have found something to occupy
myself that makes me feel comfortable. 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,
and preservation of your possessions. 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 some social 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!

Thank you!


Jan said...

That's a very neat letter. I see why it touched you.
MERRY CHRISTMAS to you all!!!!!
We love you guys!

Prince Andrew and the Queen Mum said...

Hi there- i have to add you to my favs or add you to my sidebar because i keep forgetting to check your blog....but i love this letter!