Wednesday, April 27, 2011

The "A" word

Autism.  6 letters.  An “A” word.  Doesn't sound so complicated.  It's simple, right?  Not when it stares you in the face, every day.  Yes, I'm an “Autism Mom”.  I'm also a “Twin Mom”.  My girl/boy twins are both autistic.  And we have our “normal” daily lives.  But that is probably considerably different than what most people would EVER consider “normal”.

The funny thing is my 4 year old twins don't LOOK autistic the way the general public seems to perceive autism.  They're not like the Dustin Hoffman character in “Rainman”.  And they're not like Max in “Parenthood” (although that is a quite realistic portrayal of an Aspergers individual).  They act like my children.  They have that twin magic that all parents of multiples get to see watching them grow.  But they're different.  And anyone who spends any time with them, recognizes this fact.

We have to think through every little detail of our day.  Even the slightest change can throw off a routine in such a way that we may not be able to recover from without a series of tantrums.  Our best example is when I take boy twin with me to pick up his older brother and his friend from kindergarten.   Every day, as soon as he gets off the bus from his full day of special needs preschool, we get into the car and drive down the street.   He doesn't want this.  So out come the gummy bears.  I make sure I have a green one in my hand.  He's crying, but he climbs in the car.  Then he sits on the floor.  I tell him to choose a seat.  He refuses.  I show him the gummy bear.  Then he starts cataloguing the seats. “Ball Seat”, “Cow Seat”, “Brown Seat”.  Then he sits on the floor again.  I tell him to choose, once again showing him the gummy bear and taking a quick glance at the clock.  He starts to tease, standing by a seat and calling out it's name and showing signs that he's about to climb in.  But as soon as my hand reaches in to give him that final boost, he goes to the far door and smiles.  Another glance at the clock.  Eventually, I count down from 5 and forcibly put him in a seat.  No matter which one I choose, he will call out for a different one.  But he gets strapped in, I give him the green gummy bear and we head down the street.  We always park in the same place (which is why I have to watch that clock).  And we wait.  We usually sit in the car for about 10 minutes listening to music (Laurie Berkner Band and Wiggles are among the favorites) and play some games until it's time.  Then I tell him “Last Song!” and turn off the player and the car and walk around to open his car door.  I open the door with another gummy in my hand and he happily climbs out of the car.  When he's on the sidewalk, he gets the next gummy bear.  Then we walk to the corner to cross the street to enter the school grounds.  We wait for the street to be clear and then cross.  He MUST walk on the left-side line of the crosswalk and he treats it like a balance beam.  We finish crossing the street safely, another gummy bear.  Then we walk to the school.  He has to walk on the grass rather than the sidewalk.  We get to the next crosswalk, he has to step on the pile of leaves or grass debris just off the sidewalk.   Then we cross again, but this time a distance from the crosswalk.  Another gummy bear.  We come to Bus #152.  He has to climb on.  He stands at the top of the stairs and smiles at me.  Then comes down.  Then we walk into the kindergarten playground.  We walk to Room #18.  He announces, “18!”.  Then when I repeat, he says “16!”.  So we walk to Room 16.  He leans against the door and announces “17!”.  So we head over to Room 17.  That's big brother's classroom, so we look inside to see if he's there.  Then he announces “18!” and we head back to Room 18.  We repeat this cycle (with periodic gummy bears when requested) until the kindergarten classes are dismissed.  Then a new routine begins.

Why did I just describe that in such detail?  Because THAT'S THE ROUTINE!  There can be no variation.  If there is, his world comes to an abrupt halt and he doesn't know what to do.  He can't function.  I have to jump through hoops in order to get him to understand that it's OK and that we can keep going.  Our daily lives are full of such details.  Predictability is what they need and expect.  And that's what they get.  We do very little around here that isn't pre-planned.  Spontaneity left my life just over 2 years ago when we learned they were both “on the spectrum”.  Our lives became a series of non-variable routines and activities.  And you know what?  We like it that way!

-Ilene (DRS_Are_Best)
Children with Special Needs Moderator 


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