Thursday, February 28, 2013

California Dreamin'

We are back!  From Minnesota, to California, and back again.  We have been assessed, examined, tested, and taught.  We have just returned from the world renowned Koegel Autism Center at UCSB, and life is good.  It is not easy.  It is not straight forward.  It is not complete.  But it is good.  Very, very good.  

We went for four days of assessment and training.  For Alex, and for Kevin and I too.  The Koegel Center believes in teaching the parents along with the kiddos, so that treatment can be delivered round the clock at home, and everyone is on the same page.  A novel idea in a world of specialization where your kid with challenges is usually whisked away to private therapy, and parents are often seen as a bother.   PRT is the title of their method, Pivotal Response Treatment.  Developed by the Koegels, this treatment is both research based and highly effective.  In September I attended their international PRT conference as both a parent and potential practitioner, and found the Koegel's to be the real deal.  Myself, Alex's para-professional, and 300 others from the US and abroad learned in depth about the modality, and the latest research findings.  In November our families number was finally up, and after waiting for two years to get into the Center we were able to plan a week long treatment visit.  On the eve of February Winter Break we left on our journey.

What was it like?  Well, the preparation process and the first day of testing and examination were like being ground up into hamburger.  We went over every deficit our son has.  He was a wreck, and so were his mom and dad.  But we all got through it.  The Center itself was calming.  On the edge of the University of California, Santa Barbara campus, a sun washed quiet building surrounded by giant Eucalyptus trees.  The staff were kind and prepared, expert and confident. The lead clinician and assessment director, Dr Ty Vernon, was adept at getting the best out of Alex.  The panel of tests they chose covered every area of intellect, development, and cognition.  Alex was given ample breaks, and quality cheer-leading.  Kevin was in for every moment of the tests.  I was in another room, reviewing every step of Alex's history, as well as all of his current functioning.  While perfectly handled, the process was still exhausting, and we left the first day in a numb state.  USCB is on it's own peninsula, completely self contained about 5 miles from Santa Barbara proper.  We drove into town, and had a lovely meal at the original Sambo's restaurant.  Then we went for a walk along the beach.  Alex was already recovering and got his toes right in the ocean.  He smiled and smiled, and we knew it would all be worth while.  Our beach adventure finally ended when a small wave got our boy, he sat in the surf wet to the chest, and we all laughed and laughed.

The next morning Alex did not want to go back.  He told me he did not like the tests because they were too hard.  It had also been very hard on Kevin, watching Alex flounder in conceptual and spatial areas.  Seeing exactly where deficits lie.  It seems our boy is good at skating by what he cannot do, and redirecting into other areas.  We may have been assuming too much, and not seeing the forest for the tree in front of us.  Just what we needed to know, but hard to see so blatantly.  Hard, but good.  Day 2 actually went better than the previous day, less exhaustion as the testing wrapped up and excitement as we looked forward to getting to the training part.  I had some break time to go out into campus, which was fun, and then came a big thrill for me.  In the halls of the Center I ran into Dr. Lynn Koegel.  The co-founder and clinical director of the Center.  Dr of Educational Psychology and Speech Language Pathologist.  Autism researcher for 20 years.  Author of countless articles, manuals, and books.  Also seen on Super Nanny.  National and International expert in autism.  I met her, and she is amazing.  Kind, focused, intense, and interesting.  We had a wide ranging conversation that covered Alex, autism, our family, education, PRT, and my own masters pursuits.  During this time she met Alex as he went by with Kevin, and she conversed with him as well.  You could see her awareness and focus hone in on him like a laser.  An intelligent, experienced, and curious laser that relayed information to a highly specialized brain.  Her eyes lit up, and as he traveled on with Kevin she commented to me that we had done very well with him.

We went to the beach at the end of Day 2.  A beach near the university.  We all breathed a huge sigh of relief.  The testing was over, and we had survived.  Two more days were to come, all tailored training for our whole family.  Ty told us many things at the end of the day, but I had to file them away for that moment.  I was too stunned at the conversation, comments, and assessment of Dr Koegel.  "We had done very well with him."  Like an arrow to my heart, it was what I had hoped to hear, and feared I would not.  All the work and study, time and effort were paying off.  My perceptions were not off.  Our hopes had good basis.  This from one of the leading lights in the field.

As we played on the beach I mulled it all over while Alex chased sea gulls and waves, and Kevin took pictures.  The message I distilled from that day was that our sweet boy was doing fine, and we would find a way.  A way to follow our dreams.  Our parental dreams that our son will be able to have, make, and follow dreams of his own.  The assessment was over, and the bright future lay ahead.

Saturday, February 16, 2013

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.