Simon Update.

We met with Simon's main teacher and his autism coordinator this morning for his IFSP (Individual Family Service Plan). I love meeting with these women. They are so knowledgable and always have great tips for ways we can work with Simon better.

He is doing great at school. Sits when he is supposed to sit. He is participating in group activities. He thrives off his picture schedule. At school they use a small notebook with him that moves as he moves from activity to activity. We are going to set up one of those here at home as well - one that can move around the house and travel with us.

Back in May Courtney had emailed me a bunch of great links for picture schedule information. If you are looking for images check this out (scroll down to the bottom of the page). Lots of great images located there. I just printed a bunch out for his new notebook.

Goals for this next year for Simon include: throwing & catching a ball, riding a tricycle, practicing overhead reaching (gross motor development); scissors, drawing (fine motor skills - developing his strength/being able to apply pressure when using a pencil); continuing to work on "first ___" and "then ____." (sequencing), toilet training, "look Simon, it is different" (adjusting to changes in routine) and following directions.

One of the big things that needs to happen is that we need to be more on top of turning off the videos. Right now most of his verbalization comes from things he has memorized off Dora or Pooh. Less TV. More interaction. More pairing words with actions.

Also looking forward to have the autism specialist and the OT come over for a home visit to work on some food issues (mainly getting Simon to eat a few other things), toileting, etc. Having them come to the house is so cool because it is in our own environment...just seems to click better for me.

I have said this before and I will say it again: I am so thankful for the teachers Simon has in his Early Education Program. They are totally on the ball and so willing to go above and beyond to help Simon become independent and successful. It is awesome.

And yesterday I got an email from Josie that included the following. I think I have read it before, but I don't think I have shared it on here. Thanks for sending this my way Josie.

TEN THINGS EVERY CHILD
WITH AUTISM WISHES YOU KNEW
© 2005 Ellen Notbohm

Some days it seems the only predictable thing about it is the
unpredictability.  The only consistent attribute -- the inconsistency
There is little argument on any level but that autism is baffling, even
to those who spend their lives around it.  The child who lives with
autism may look “normal” but his behavior can be perplexing and
downright difficult.

Autism was once thought an “incurable” disorder, but that notion is
crumbling in the face knowledge and understanding that is increasing
even as you read this.  Every day, individuals with autism are showing
us that they can overcome, compensate for and otherwise manage many of
autism’s most challenging characteristics.  Equipping those around our
children with simple understanding of autism’s most basic elements has
a tremendous impact on their ability to journey towards productive,
independent adulthood.

Autism is an extremely complex disorder but for purposes of this one
article, we can distill its myriad characteristics into four
fundamental areas: sensory processing challenges, speech/language
delays and impairments, the elusive social interaction skills and whole
child/self-esteem issues.  And though these four elements may be common
to many children, keep front-of-mind the fact that autism is a spectrum
disorder: no two (or ten or twenty) children with autism will be
completely alike.  Every child will be at a different point on the
spectrum.  And, just as importantly – every parent, teacher and
caregiver will be at a different point on the spectrum. Child or adult,
each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

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.

And finally, three words:  Patience.  Patience.  Patience.  Work to
view my autism as a different ability rather than a disability.  Look
past what you may see as limitations and see the gifts autism has given
me.  It may be true that I’m not good at eye contact or conversation,
but have you noticed that I don’t lie, cheat at games, tattle on my
classmates or pass judgment on other people?  Also true that I probably
won’t be the next Michael Jordan.  But with my attention to fine detail
and capacity for extraordinary focus, I might be the next Einstein.  Or
Mozart.  Or Van Gogh.

They had autism too.

The answer to Alzheimer’s, the enigma of extraterrestrial life --
what future achievements from today’s children with autism, children
like me, lie ahead?

All that I might become won’t happen without you as my foundation.
Think through some of those societal ‘rules’ and if they don’t make
sense for me, let them go.  Be my advocate, be my friend, and we’ll see
just how far I can go.

© 2005 Ellen Notbohm
Ellen Notbohm is author of the book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media’s Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders,
winner of Learning Magazine’s 2006 Teacher’s Choice Award.  She is a
regular columnist for Autism Asperger’s Digest and Children’s Voice and
a contributor to numerous magazines and websites.  Your comments and
requests for reprint permission are welcome at ellen@thirdvariation.com.