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. 

It Really Happened

I still can't quite believe that Kevin and I went to Jamaica.  An amazing late winter trip, just us, while our son stayed home in Minnesota and went to school.  One of the perks of being an adult I suppose.  It was a truly incredible trip, from the frozen North to a tropical paradise.  We stayed at a resort just for couples that was "all inclusive".  No need for money while there, not for the activities or the abundant and delicious food and drinks, or even the top notch service.  I felt like a princess.  And it was like a time machine back to dating.  All exterior pressures were on hold for one glorious week.  We missed our son like crazy, and I don't know that we can ever leave him behind like that again, but it was a nice bit of heaven.  Here are a few pics to start the story, I will post more as I get them processed and ordered.

It turned out to be windy for the entire time we were there, so we took advantage of the waves and learned to boogie board.  It was fun, and exhilarating, exhausting, and a pure riot.  We got out once or twice almost every day.

We were on the western tip of Jamaica, along a beautiful beach, at a resort called Couples Negril.  I have never stayed at such a place.  More of a Low Budget kind of traveler, this was a style that was not difficult to get used to.  The Jamaican staff were lovely and perfect, the food to die for, and the resort itself was built into the site like a residence in  the Garden of Eden.  Every need was anticipated, from food to drink, to entertainment, to down time.  We feasted and experimented.  I ate curried goat and smoked marlin.... both delicious.  Sorry PETA, I have really surrendered my card now.

Oh yeah, and there was this guy I used to know.  I think I married him awhile back, but with the pressures of child raising, Autism, business, house holding, day jobs, infertility, and a generally wild schedule our marriage had been on the back burner for quite awhile.  This trip was the Honeymoon we never had, and the 10 wedding anniversary trip we didn't take.  We have been married over 11 years now, and this retreat together was fully appreciated and celebrated.  

And like a fairy tale.  A resort to tend to all of our needs, built like a palace, filled with interesting people.  I was not sure what the guests would be like, and they were super.  Many other appreciative folks, taking a break from their busy schedules and enjoying a bit of paradise.  The staff were great too, and having worked in the tourism and guest services industries, including house keeping, I did not feel too bad taking advantage of their hard work and expert attention.  I was a bit like non-stop theater, with the staff as the actors and the guests as the interactive audience.  It was a well directed and well  preformed, Broadway quality for sure.  

More to come....

Summer and the Blogging is Slow

Hello readers out there. Summer is truly here in the Northland and the living is busy. And the computer is very uncooperative. It does not like any kind of heat and may take 10-15 tries to get started. Then it may quit at any moment. Needless to say I don't always get to try number 15 before I give up. Especially since timing and time management are not my specialties and I am usually cranking up the computer on a whim. I will get more focused soon, but not until I get to Wausau and have an awesome on water time. This little trip of mine is taking all my extra mental energy, after taking care of my little bug and getting myself to work when required. Blog, home, and all other issues (like good cooking, regular gym time, finances, and anything cleaning) have taken a big back seat for now. Alex is doing good, and we actually turned a corner on home life by investing in "Floortime". More on this after next weeks adventure. Kevin is my hero, as ever, for stepping up to let me go for five days. Not sure why I deserve him but will just be happy about the whole situation. I will get to see my sister, my niece and nephew, my mom, and my dear friend Shereen on my trip too so there will be lots to tell. Hopefully the shoulder will hold out and the boat wont sink. I have actually been training so maybe I wont embarrass myself too much. Or that could just be wishful thinking!