OT: A Holiday letter from our kids,,,,,,,

[Guest guest]

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 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 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 impaired. 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 a while 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 overprotective, 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!