ThanksbutNo

Raising a child with autism is like being shoved on to a roller coaster when you are afraid of heights. FYI, I am PETRIFIED of heights. Raising a child with autism is also a never-ending mind screw.  Just when you think you know what you’re doing, you’re proven dead wrong.  Ask me how many times a day I put that theory to test. On the other hand, raising a child with autism can make you feel pretty thankful…I think…

I am thankful that my son attends an amazing private school.  I can (and probably will) write an entire blog series detailing the reasons why.   I am also thankful that his stint in ABA therapy only nearly bankrupted us.  Which gets me thinking…why express such appreciation?

Why aren’t most public schools equipped to educate children on the spectrum?  When is the state going to wake the hell up and do something?  And two grand a month is the going rate for ABA?  SERIOUSLY NOW?

Ok Kristi, regroup.  I am thankful that I can call J.R.’s doctor and say to him “Look, my kid has already been traumatized by a haircut this week, can you just prescribe him something over the phone for his runny nose and spare your staff the agony?”  I’m equally thankful that the staff of Lester’s Diner has NEVER asked us why J.R. can suddenly wig out over his (perceived too short) short stack and bacon.  Or why he seldom greets them, glued to his (loud) handheld video game.

Then again, why did J.R.’s first pediatrician give the green light to six vaccines in one sitting?  Or tell me visit after visit that his own son didn’t talk much either at that age, so no need for alarm.   And as much as I love a good pancake breakfast, it would be nice if we weren’t limited to the restaurant we felt comfortable visiting.

Forgive me.  Sometimes my rollercoaster seatbelt cinches too tightly and cuts off the circulation to my brain.  Let me backtrack, pardon the pun.

I am thankful that my son is well enough to attend school and actually learn.  That is not the case for so many children.  And yes, additional, private ABA therapy changed my son’s life.  Just this week a study is being discussed that finds ABA can reverse or cure autism.  Personally I don’t believe in reversing or curing, but I was flabbergasted by the outpouring of questions from parents: What is ABA therapy? Where can I get it? WTF do you mean my insurance company wont cover it?

There are just way too many parents out there who are not educated on the latest autism treatments, or the “game” we have to sometimes play to get the services we deserve.  So unfair.  Okay I’m back to feeling thankful again…but let me have this little tidbit:  I would be super thankful if I were allowed five minutes (and a baseball bat) with the insurance exec whose decision it was to abandon families suffering through autism.

My point in all of this?  If you’re in my shoes, the term “thankful” is a tricky one.  I am aware of my many blessings, yet find room for for complaints.  But to whom should I complain?  My friends whose children may never walk?  Never speak? Never digest bacon? Wait, I’ve got it… should I complain to those same friends who NEVER COMPLAIN?

If you count the question marks in this narrative it’s clear that I am a mess.  I guess that just makes me a human being.  A human being who isn’t hosting Thanksgiving (again) this year.  Now for that I am thankful!