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Monday, March 12, 2012

Perseveration

What does a parent do when their baby cannot get something out of their head?  I mean, it's beyond obsession, it's beyond a needle getting stuck in the record (and yes, I just totally aged myself there).  It's a constant, repetitive, never-ending, quest of a question that goes on, and on, and on, and on...without hesitation...with a level of resilience that is quite amazing yet so completely exhausting and overwhelming to the caregiver -- in this instance, his brother, myself and father --- that we are spent.  We walk around on eggshells. We fear saying that one. Simple. Word. That will definitely set off the wave off meltdown once again.  Lately it's been his latest toy obsession: marble run.  He has one and his AI classroom has one.  They are wonderful toys for autistic kids.  Before the marble run it was "Don't Wake Daddy".  Then it was "Pop the Pig".  Any parent of a child with autism knows this double edged sword of OCD - obsessive compulsive disorder.  How do you let them scratch the itch without feeding the beast?

Walking Around On Eggshells....



This is my life. Plain and simple. 


My soul sister and I go to "family breakfast" every Sunday with our families.  She is learning what she can and cannot say around the rascals but of course, this changes week to week, day to day, based on the aforementioned obsession de jour.  Her sweet boyfriend of 11 years asked them about a hockey game they went to with their special ed class and she shot him a look that he could have felt from across the city. "NO! Don't ask about that!" She whispered to him quietly. "I can't even ask about that?" he quietly whispered back, quickly staring at his laptop.  The boys didn't hear or suspect anything and I felt really guilty.  How was he to know that a very sweet, well intentioned question may very well trigger a meltdown in them? (as an aside: They went to this hockey game and it was a terrible sensory experience for them... think of them being in the absolutely loudest, most obnoxious place on the planet with sound coming at them at the highest decibel possible at 100mph for 4 hours straight. And multiply that times 50.  Then you'll get the picture)  

I interjected and asked the boys about the hockey game having a pretty firm grasp on the fact that I didn't think that this particular subject would be the one to push them over the edge... (yeah, ok, it worked out this time but I'll be the first to admit that sentence was totally arrogant and totally hilarious.. "having a pretty firm grasp".... c'mon!!! that's just funny right there!)  I never want to discourage anyone from asking the boys questions, especially people I consider my family, but I also understand there is an ever evolving, ever changing learning curve -- even for me.  

Today the word de jour of meltdown is "marble run" or "mouse trap game".  Who knows what tomorrow could bring and I do not want to find out.  Please God I look forward to the day when there isn't a word, or an object, or an item.... but if that day never comes... we will persevere in the midst of it all. Like always.  

Still Searching....



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