Friday, July 15, 2011

Autism Land

Admitting...anyone willing to forget the "normal"...willing to forget what is "appropriate"...and willing to open your eyes to a whole new world...

Before taking a journey into Autism Land...keep in mind that every resident is different...and every visitor has a different experience there.  It may even be hard to tell who is a resident and who is a vistor at times.  This is a "travel guide" to Autism Land....of course it's based on my personal experience as a somewhat permanent visitor there...

In Autism Land you "say it like you mean it".  Throw away the "Normal" slang...throw away the jokes...everything is literal.  So just say what you blunt and straight forward....don't hint...don't "beat around the bush" (and yes, if you said that to Addie she would be looking for a bush).  Last week I called Addie a "silly goose"...she was VERY upset...." I am not a goose...I am Addie...I'm not a goose....I'm not".  Of course...sometimes this can be funny...and it does makes for some very humorous moments.  My husband, J, and I usually look at each other...and silently laugh with our eyes.  But it's really best to be clear and direct.

In Autism Land a couch is not a sofa...a cat is not a kitty cat...big is not large...  Each object has a name...only ONE name.  Sure you may think... "couch", "sofa", "seat"... they all mean the same thing right?  Wrong in Autism Land.  Addie does not understand what you mean if you call an object the "wrong name".  She might scream...cry...or correct you bluntly. It may not make sense to you...but that's ok ... you don't make sense to her either.

In Autism Land change is not welcome.  Addie likes everything to be the same.  If I made toast first yesterday....then I can't make eggs first today.  Like many of the residence of Autism Land...she is having to live in your world...and is having to understand things that make no sense to her world.  So, I can't say I blame her...If I had to deal with all that she has to understand and cope with everyday...I might want a little sameness too.

In Autism Land there are rules.  Everyone has "rules".  I call them "rules" for Addie...because they are just that.  They cannot be broken...and if they are... there needs to be fair warning and many discussions about it before hand.  For you and may just be a "pet peeve" a certain side of the bed you like to sleep on.  But for Addie they are rules.  A few of Addies rules ...stand in a certain place in the bathtub...have me count to 7 while pouring water on her head...dress in a certain order (underwear first, then shirt, then shorts, then glasses, then brush hair) brushing is five strokes on each side of her head...bed time is the biggy (one story, lay down, pull up covers, tuck in caterpillar, one kiss, one hug, prayer, walk to door, blow kiss, then we recite the entire schedule for tomorrow - yes, even down to what are we going to eat for breakfast).  It may sounds crazy to some...but these rules help Addie cope with the fact that she is trying to live in our's a comfort to her...and it keeps her calm.  It helps her cope and to function.  

In Autism Land you may not speak the same language.  Addie's language sounds like your language...but it's not always the same language.  She may not always understand you and you might not always understand her. Addie may yell loudly in your face and scream "HELLO"...but she may talk quiet as a mouse to ask for help in a busy classroom.  She may repeat herself over and over and over.  It's ok this calms her and helps her to comprehend.  She may begin to quote a TV show or a book.  She may just want to tell you all about butterflies...she doesn't want you to interrupt...just wants to talk.  C has another language.  His language is with signs or pictures...or maybe some gestures or sounds.  He's just not the same language.  If you are patient and quietly listen and will understand their language.  You will hear beautiful stories from a child.  You will see the glimmer of light in their eyes.  Your heart will be touched and your mind will be opened to something new...a little bit of their world.

In Autism Land things may not always seem "appropriate".   Addie may run up to a person on the playground and scream "my fingernails are painted"...and then run away.  The person may look confused...but it was her way of trying to interact.  She may tell me sharply "be quiet mommy".  To others this may sound rude or disrespectful.  But I know that this is such a HUGE step for her.  When my voice was too loud for her a year ago Addie would have had a huge melt-down...and it would have been a rough day.  So when she uses her words to tell me to "be quiet mommy"...we rejoice...even though other's may think it's "inappropriate".  It's actually very appropriate.  It may seem like Addie says inappropriate things at the inappropriate times...but in reality it might be more appropriate than you think.

In Autism Land sock seams and tags are a HUGE deal.  "AHhhhh....there's something in my hurts me....ahhhhh"...Addie screams as I try to pull off her shoe.  To my surprise...there is nothing there.  I should correct myself me there is nothing....but to Addie the seam in her sock is painfully uncomfortable.  She cannot continue our walk because of the painful seam.

In Autism Land honesty rules!  "Did you hit your brother?"...."Yes I did"..."Why?"..."I don't like him"..."Is that nice?"..."No"....this is a typical conversation with Addie.  She has never lied to me...she has never tried to hide something she did wrong...nor does she ever assume anything.  She will tell you if she doesn't like you...or if you are too loud...or if you smell.  It might be funny or hurtful.  But when she says "I love you" you know it is real and true and for no other reason than the fact that she loves you.  So skip the's just the pure raw honest truth in Autism Land.  I guess could all learn something from this one.

In Autism Land the lights can be loud.  Addie calls them "scary lights"....the dreaded fluorescents.  She says they are flickery...and too loud.  She has "super sonic" hearing and notices the little things that we tend to drown out as background noise. 

In Autism Land emotions may not be what they seem.  Addie may scream and laugh when she is getting upset...she may have a furrowed brow when she is happy...she may be staring out the window when she is really listening to every word you say.  You can't always read her emotions...and on the flip side...she has a hard time reading your emotions...she doesn't notice your tone of voice or that "motherly LOOK" you give her when she has stepped over the line.  She doesn't see the subtle hints and body language.  Sometimes I wish I could do this too.  Just ignore all that...and take life for what it is...plain and simple.

In Autism Land the world is seen in pictures, patterns, and colors.  Addie immediately notices what color you are wearing...especially if it's green (her favorite).  She will then start matching it up to all the other similar colors in the room.  Don't try to pass off orange for red...she will correct you.  She always knows if things are the same or different.  She likes to color, size, and shape.  She likes to count things.  She likes to make lines of similar objects. She makes the most complicated beautiful block towers (and she would correct she calls them her "machines").  As a designer I love to watch her create patterns and lines...I love to watch her budding art skills.  Her creativity always amazes me.

In Autism Land there is true passion.  When Addie likes something....she REALLY likes it...and I mean totally whole heartedly passionate about it.  Her passion with butterflies has lead her to learn all the different species of butterflies and the entire life-cycle by age 3.  One day...while hiking through the woods...she says "that's a black swallowtail".  I looked at her and then at my husband and we shrugged.  I wasn't sure what she meant.  When we got home I realized that one of her books had the different butterfly species in the back.  I asked my husband and found out he had been reading those names to her....and she was RIGHT!!  It really was a black swallowtail.  From that day on...we have seen her recognize many different types of butterflies.  She even figured out the different between moths and butterflies...between male and female monarch butterflies...the different types of the caterpillar sheds it's skin...what their favorite plants are...and many many many other facts and findings.  She has such a thirst for knowledge.  We just keep encouraging her...keep on praising our little passionate butterfly scientist.  I never would have had this type of concentration at her age (...yeah right...who am I kidding...I don't even have that kind of focus at my age now).  She just continues to amaze me everyday with her sheer passion and brilliance.

Autism Land is a gift.  It will change you forever.  Being a permanent visitor has taught me so much in understanding, patience, humility, and tolerance in my life.  It has brought me to me has put me in the has taught me life lessons that I am forever thankful for.  I will never again look at someone else and judge...I will never again think that it can never happen to me...I will never again think I can do this life on my own.  The Lord has used Autism Land in my life to show me His love and strengthen my faith.  He has blessed me over and over.  My two little butterfly residence are perfect in His sight.  And I know....He made them just the way they are.

So take a trip and visit Autism'll meet someone'll laugh and you'll'r faith will be strengthened....and you might even realize that normal isn't so normal after all.


barbkibler said...

This is truly beautiful. It is one of the best descriptions I have ever read. I pray God continues to open your eyes to the blessings your precious children have for you. Love you!

pattiann said...

Thank you so very much for sharing your world with us. It is a beautiful world and I am sure the good Lord smiles every time he looks at you and your babies. God Bless!