Big Things on the Horizon

Big things.  Huge.  Gigantic.  In the wake of continuing shake ups in Alex's SpEd department we are stepping out of the fray.  Exit stage left.  Hop on plane.  Step off in sunny California.  Going to one of the best autism centers in the world.

Have I mentioned lately that no one actually knows what autism is?  No one.  Not even the folks at this center, which is known world wide.  They are the first to admit that no one knows what it really is.  But they will tell you about how their methodology creates visible brain changes that trend towards normal.  And they will show you case studies about kiddos that moved into the typical range.  But they wont tell you what autism is, because no one knows.  Which drives me nuts when I start to sense that people think they know, and think they know what it means for my son.  Because that usually means no good. 

I was once told by an expert to never, ever tickle my son.  Experts put my son in preschool in a level 3 autism classroom, where he did not see a typical child all year and picked up terrible behaviors.  I was told by another expert that I should have my son in an autism only kindergarten room, and I would want him in that room with the big swing and low expectations for his entire elementary school education.  Another expert spent much of his teaching time letting him watch Cat in the Hat videos, presumably because she didn't think him capable of more.  I believe that these "experts" all thought that they knew what autism was, and what it meant for my son.  I know they were wrong.

We are going to California for some answers.  We are putting out a huge amount of money, and asked our family for great help, because we believe that having up to date information is the best possible course of action.  It takes current research 25 years to make it into mainstream practice.  We are not willing to wait.

So we are heading to the University of California, Santa Barbara, and will be getting a full work up at the Koegel Center.  Robert and Lynn Koegel have been working with kids on the autism spectrum for over 30 years.  Robert studied and researched with Lovaas.  They have published works for decades and built a dynamic program at UCSB.  They work with kids from infancy all the way into adulthood.  They have opened multiple clinics, and teach nationally and internationally.  They are a powerhouse, and we are so fortunate to be heading to their ground zero.

Tomorrow (Sunday) we fly.  Tuesday, Wednesday, Thursday, and Friday we will be assessed, examined, tested, and taught at their clinic.  And Monday, we get to go to Disney.   I wish Disney could be at the end of the trip, but maybe it will get all our ya-yas out before the serious stuff.  We already sent in every test and assessment Alex has ever had, plus a 16 page current intake.  When we leave we will have a 22 page report, possibly a different diagnosis from basic autism, and hopefully a very specific plan of action.  In that report we hope to see a clear picture of where our son stands on the autism spectrum, and what his capabilities are likely  to be.  Are we crazy to be aiming towards college?  Do we have a prayer for an independent life?  What, exactly, is it going to take to hit his highest potential?  I know that life is actually a crap shoot.  I know that nothing is guaranteed.  I know that plans are not to be depended upon.  But I have to try.  We have to go for it.  Alex is too charming, and funny, and unique, and wonderful not to give him the gift of our complete and total devotion.  We will not let him sink just because some "experts" in our home town have assumed that an autism label is also a "you will never succeed at being independent" label.  "We shoot for adequate" is not the educational philosophy in our home, as it is in many special education departments.  We shoot for the moon, instead. 

So, off we go.  Alex, and Mom, and Dad.  We are leaving behind the snow.  The five degree temperatures.  The wind and ice.  Also the skiing, and the woods, and the wood stove.  It would have been a lovely winter break at home, with temps heading up to the 20's soon, and many play dates to be had.  But it's okay.  Santa Barbara will be nice.  We will sweat it out at 40 to 65 degrees, and get some sun block for our pasty selves.  We will see palm trees, cool flowers, beaches, and ocean.   Smell the salt, and peel off about 12 layers.  There is a pool to swim in and a beach to walk to from the hotel.   And Disney should be a riot, especially with my best friend from growing up who lives in LA.   I am a little afraid that the place might make a lasting impression on Alex, and some day he might want to go to college there.  But really, that is the least of my worries.  We are off tomorrow, and hopefully we will continue to find the world.