Tuesday, April 11, 2017

My Blue Reality

Today I had a moment; a moment of weakness, a moment of sadness and grief.  To be clear there was no huge tragedy that befell us, not even a small emergency.  All I did was open  Facebook and scroll down my news feed.  I laughed at the usual memes, sighed and scrolled past the political rants, smiled at my friends day to day lives, even prayed for a few who have hit hard times.  Then I came to a post celebrating one of my friend's children being inducted into the National Honor's Society.  Then another friend's child won an award for the athletic achievements.  And another's child had a poem published.  I was so excited to read all these accomplishments.  I have awesome friends and they are raising great kids.  And then I had my moment.  It's a moment that you may be familiar with, if you too are blessed with kids that are special needs or a little different. You are smiling and happy, celebrating for your friends and then suddenly your reality hits in stark contrast.  A reality that is filled with therapy and specialist and more doctors appointments than I can count.  A reality that includes medication schedules and ARD meetings and long calls from the school. A reality that has meltdowns, and failing grades and long sleepless nights.  A reality where leaving the house to go for a walk is cause for great celebration, where lasting through the entire field trip is the equivalent of scaling a mountain and remembering to put on underwear and deodorant are huge milestones.
This month I light it up blue to celebrate neurodiversity and autism.  I have been blessed to be a wife and a mother to some amazing people with ASD (autism spectrum disorder).  There isn't a day that goes by that I don't get the chance to learn and laugh with these boys.
That being said, there is another reality. The reality that has me praying through my tears and signing my son's up for services for their adult years because some of them may not be fully independent.  This is my daily reality, one that is my ever present and mostly accepted companion.
I don't think twice about the fact my 12 year old is incapable of doing an eye exam without me holding his head still for the optometrist.  Or that my 16 year old is watching Sponge Bob and fighting off anxiety attacks while other boys his age are driving and going on dates.  Or that I have to make sure my 14 year old is wearing underwear before he leaves the house.
But every once in a while it hits me like a ton of bricks, when I watch the kids that they've grown up with moving on, growing up and accomplishing things that aren't even on our radar yet; things that may never be on our radar.
Don't get me wrong, I'm excited for my friend's and their children.  I'm so happy to see all they are doing.  I don't envy their achievements. I want to see all the wonderful things to continue.
But there is a reality, my reality, maybe some of you , my reader's reality, that for a moment causes the grief and sadness to threaten to overwhelm.  Our lives are different, our achievements and milestones are on a different chart, our proud parent moment's are hard won and very often delayed.
Ours is a reality of persistence without the guarantee of results. A reality where therapies and medicine replace sports and ballet.  A reality where a hard won C is as exciting as a 4.0
 in other families.
To truly celebrate neurodiversity one cannot whitewash the hard things that come with that diversity.  Truly accepting and celebrating neuro differences is to be honest in our triumphs and in our struggles.  So this year I am celebrating Autism Awareness month through my sadness and grief.  I celebrate our achievements and I rededicate myself to our struggles.  This is my reality.  This is my celebration.  Peace and love to you my friends-Kristine

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