10 things...

We had a crazy weekend here.. Hope you had a great one too!

I just finished reading this book, and wanted to share 10 things every CHILD with autism wishes you knew... ( from “Ten Things Every Child With Autism Wishes You Knew,” © 2005 Ellen Notbohm)

1. I am first and foremost a child. I have
autism. I am not primarily “autistic.”


My autism is only one aspect of my total
character. It does not define me as a person.
Are you a person with thoughts, feelings and
many talents, or are you just fat
(overweight), myopic (wear glasses) or
klutzy (uncoordinated, not good at sports)?
Those may be things that I see first when I
meet you, but they are not necessarily what
you are all about.
As an adult, you have some control over
how you define yourself. If you want to
single out a single characteristic, you can
make that known. As a child, I am still
unfolding. Neither you nor I yet know what
I may be capable of. Defining me by one
characteristic runs the danger of setting up
an expectation that may be too low. And if I
get a sense that you don’t think I “can do it,”
my natural response will be: Why try?


2. My sensory perceptions are
disordered.

Sensory integration may be the
most difficult aspect of autism to
understand, but it is arguably the most
critical. It his means that the ordinary
sights, sounds, smells, tastes and touches of
everyday that you may not even notice can
be downright painful for me. The very
environment in which I have to live often
seems hostile. I may appear withdrawn or
belligerent to you but I am really just trying
to defend myself. Here is why a “simple”
trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of
people are talking at once. The loudspeaker
booms today’s special. Musak whines from
the sound system. Cash registers beep and
cough, a coffee grinder is chugging. The
meat cutter screeches, babies wail, carts
creak, the fluorescent lighting hums. My
brain can’t filter all the input and I’m in
overload!
My sense of smell may be highly sensitive.
The fish at the meat counter isn’t quite fresh,
the guy standing next to us hasn’t showered
today, the deli is handing out sausage
samples, the baby in line ahead of us has a
poopy diaper, they’re mopping up pickles on
aisle 3 with ammonia….I can’t sort it all out.
I am dangerously nauseated.
Because I am visually oriented (see more on
this below), this may be my first sense to
become overstimulated. The fluorescent
light is not only too bright, it buzzes and
hums. The room seems to pulsate and it
hurts my eyes. The pulsating light bounces
off everything and distorts what I am seeing
-- the space seems to be constantly
changing. There’s glare from windows, too
many items for me to be able to focus (I may
compensate with "tunnel vision"), moving
fans on the ceiling, so many bodies in
constant motion. All this affects my
vestibular and proprioceptive senses, and
now I can’t even tell where my body is in
space.

3. Please remember to distinguish
between won’t (I choose not to) and can’t
(I am not able to).
Receptive and expressive language and
vocabulary can be major challenges for me.
It isn’t that I don’t listen to instructions. It’s
that I can’t understand you. When you call
to me from across the room, this is what I
hear: “*&^%$#@, Billy.
#$%^*&^%$&*………” Instead, come
speak directly to me in plain words: “Please
put your book in your desk, Billy. It’s time
to go to lunch.” This tells me what you
want me to do and what is going to happen
next. Now it is much easier for me to
comply.

4. I am a concrete thinker. This means I
interpret language very literally. It’s very
confusing for me when you say, “Hold your
horses, cowboy!” when what you really
mean is “Please stop running.” Don’t tell
me something is a “piece of cake” when
there is no dessert in sight and what you
really mean is “this will be easy for you to
do.” When you say “It’s pouring cats and
dogs,” I see pets coming out of a pitcher.
Please just tell me “It’s raining very hard.”
Idioms, puns, nuances, double entendres,
inference, metaphors, allusions and sarcasm
are lost on me.


5. Please be patient with my limited
vocabulary. It’s hard for me to tell you
what I need when I don’t know the words to
describe my feelings. I may be hungry,
frustrated, frightened or confused but right
now those words are beyond my ability to
express. Be alert for body language,
withdrawal, agitation or other signs that
something is wrong.
Or, there’s a flip side to this: I may sound
like a “little professor” or movie star,
rattling off words or whole scripts well
beyond my developmental age. These are
messages I have memorized from the world
around me to compensate for my language
deficits because I know I am expected to
respond when spoken to. They may come
from books, TV, the speech of other people.
It is called “echolalia.” I don’t necessarily
understand the context or the terminology
I’m using. I just know that it gets me off the
hook for coming up with a reply.


6. Because language is so difficult for me, I
am very visually oriented. Please show me
how to do something rather than just telling
me. And please be prepared to show me
many times. Lots of consistent repetition
helps me learn.
A visual schedule is extremely helpful as I
move through my day. Like your day-timer,
it relieves me of the stress of having to
remember what comes next, makes for
smooth transition between activities, helps
me manage my time and meet your
expectations. Here’s a great website for
learning more about visual schedules:
www.cesa7.k12.wi.us/sped/autism/structure/
str11.htm .
I won’t lose the need for a visual schedule as
I get older, but my “level of representation”
may change. Before I can read, I need a
visual schedule with photographs or simple
drawings. As I get older, a combination of
words and pictures may work, and later still,
just words.

7. Please focus and build on what I can
do rather than what I can’t do. Like any
other human, I can’t learn in an environment
where I’m constantly made to feel that I’m
not good enough and that I need “fixing.”
Trying anything new when I am almost sure
to be met with criticism, however
“constructive,” becomes something to be
avoided. Look for my strengths and you
will find them. There is more than one
“right” way to do most things.

8. Please help me with social interactions.
It may look like I don’t want to play with the
other kids on the playground, but sometimes
it’s just that I simply do not know how to
start a conversation or enter a play situation.
If you can encourage other children to invite
me to join them at kickball or shooting
baskets, it may be that I’m delighted to be
included.
I do best in structured play activities that
have a clear beginning and end. I don’t
know how to “read” facial expressions,
body language or the emotions of others, so
I appreciate ongoing coaching in proper
social responses. For example, if I laugh
when Emily falls off the slide, it’s not that I
think it’s funny. It’s that I don’t know the
proper response. Teach me to say “Are you
OK?”
9. Try to identify what triggers my
meltdowns. Meltdowns, blow-ups,
tantrums or whatever you want to call them
are even more horrid for me than they are
for you. They occur because one or more of
my senses has gone into overload. If you
can figure out why my meltdowns occur,
they can be prevented. Keep a log noting
times, settings, people, activities. A pattern
may emerge.
Try to remember that all behavior is a form
of communication. It tells you, when my
words cannot, how I perceive something that
is happening in my environment.
Parents, keep in mind as well: persistent
behavior may have an underlying medical
cause. Food allergies and sensitivities,
sleep disorders and gastrointestinal
problems can all have profound effects on
behavior.
10. If you are a family member, please
love me unconditionally. Banish thoughts
like, “If he would just……” and “Why can’t
she…..” You did not fulfill every last
expectation your parents had for you and
you wouldn’t like being constantly reminded
of it. I did not choose to have autism. But
remember that it is happening to me, not
you. Without your support, my chances of
successful, self-reliant adulthood are slim.
With your support and guidance, the
possibilities are broader than you might
think. I promise you – I am worth it.



P.S. Don't forget that today is the last day to sign up for my giveaway!