Saturday, January 21, 2012

Inauguration Day, 2012

Holiday fireworks display at The Husband's work
Photo taken by me, December 2011

Yesterday, January 20, was what I've come to refer to as Inauguration Day in our family. It was the 8th anniversary of Boo's diagnosis, the day that a cold-hearted doctor declared that our beautiful boy had "clinical features of autism spectrum disorder" and changed our lives forever with those six words.

For the past two years, I've written a post on January 20 - my own State of the Autistic Union in this house, if you will. (Inauguration Day, 1.20.2011 and Book Review (Kids): My Brother is Autistic 1.20.2010). I didn't get this post done yesterday because this has been a busier than usual week at work and by last night, I was fried and decided to put on my oxygen mask by logging off the computer and going to bed a little earlier than usual. (I figured you would all understand.)

From last year's post, Inauguration Day, 2011:
To me, January 20 will always be diagnosis day.  But more often than not, it often carries with it an inauguration, of a Governor or a President.  
I've always thought the anniversary of Boo's autism diagnosis day and inaugurations is a little bit ironic. The Husband is a presidential scholar, has an advanced degree in the study of the American Presidency.  It was once a calling academically (although not politically, albeit briefly on the local level, despite what some may have thought.)  
Like father like son, one of Boo's first intense interests was, indeed, the American Presidents.  The Husband had bought a deck of Presidential flash cards from the National Constitution Center and showed them to Boo, never expecting that at 2 years old he would recite them, in order, along with their Vice Presidents and their political party.  History repeated itself at family gatherings, as Boo would be asked to recite facts about Millard Fillmore just as his father did at the same age.  
Inauguration Day is one with much promise, of abundant hope, just as it was when the country welcomed President John F. Kennedy on January 20, 1961, with promises of New Frontiers and Camelot. And hope prevailed again, on January 20, 1993, when we braved the bitter cold to be among the throng of people in Washington D.C. for President Bill Clinton's inauguration.  And never moreso was hope in the air than on January 20, 2009, when President Obama was inaugurated.
Yet hope was nowhere to be found in a cramped examination room on January 20, 2004, as our questions went unanswered, as we took a badly-photocopied article about the signs of autism, as we collapsed in tears and blinked in disbelief when asked to decide (not at this moment, you have time, but not much) on a therapeutic course of action before the proverbial guillotined window of time would slam shut on our 2 year old's blond head.
And yet, while the memory and heartbreak of this day never quite disappears, and I find myself replaying the moments of the day (this is when we left this is when she told us this is when we came back home), I try to look at our January 20 as more of an Inauguration Day.  
Some years, that's much easier to do than others. 
Today I find myself trying even moreso to grasp that gold ring of possibility that Inauguration Day brings. I find myself reflecting more than usual on all of Boo's accomplishments (and indeed, he has accomplished so much more than we ever imagined during our breakdown and the Black Hole era of seven years ago). 
Last year at this very time, The Husband had just accepted the job that would bring us here and we were betwixt and between so many things. We had just made the decision to stop social skills therapy, for various reasons, and we weren't sure what was ahead of us. We were very much on the cusp of inaugurating a new life.

We're more settled now, in many ways, but if I've learned anything during these 8 years, it is that we always need to have a spirit of forging ahead, of always inaugurating and embracing the new and what comes our way because ... well, that's what we have to do, isn't it? Otherwise, the worry and the uncertainty about the challenges ahead will win - and will squelch the surprise and delight that comes along with the remarkable accomplishments and strides. I've learned that the road is always changing and our autism GPS is often unreliable and unpredictable. That's certainly been the case for us this year.

This Inauguration Day finds us heading into our first IEP meeting in more than 4 years on Monday, with services just having been reinstated (see my post, "Welcome Back" from 1.7.2012 for that story) yet worried if we'll still have them in another year or so, depending on how the powers-that-be decide to define autism for kids like Boo who have Asperger Syndrome. We've been at this table before, but not for a long time; it feels like we are pioneers, starting anew all over again in this territory.  We've been here, it is familiar turf, the language sounds familiar, but we are rusty as we are inaugurating this new chapter.

There is so much up in the air. Much uncertainty, both on the local level here and on the wider scale. To paraphrase one of my friends, I think we're in for Mr. Toad's Wild Ride with this one. But for the day to day, all we can do is just keep on doing what we've been doing.

Just as we have been for the past 8 years.

copyright 2011, Melissa, The Betty and Boo Chronicles If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.


Lisa Weinstein said...

Boo is lucky to have loving parents who will do everything they can for him!

Alison said...

Much success with the IEP meeting!

It seems pretty clear that one of the big differences between having a kid with Down syndrome and a kid with autism is the moment of diagnosis. I knew Maybelle for less that 24 hours before we got that diagnosis, and I think in many ways that made things easier for us. Also, it was an unambiguous diagnosis. It was, of course, accompanied with a bunch of shitty stereotypes in my mind, but I was fortunate enough to have colleagues and friends who quickly set me straight.

But unambiguous was helpful.

Thanks for sharing your inauguration day anniversary with us every year!