Emotion #4: Confusion

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There are many reasons to feel confused with ASD in your world.  Not knowing whether your child is going to improve/backslide/get services/be teased/fit in/speak to you in full sentences/care about anything besides his obsessions/etc is extremely mind-boggling.  The ever-changing ability level of our child is confusing.    

We feel like we’ve recently lost some ground.  There was a week long Fall Break and it’s most likely related, but now we are getting less talking.  There is a higher frequency of echolalia (which can be like watching the same episode of a tv show over and over and over again), and less answering questions.  There were some large meltdowns last week, but I attribute that to the loss of his daily school routine that he’s gotten so great at.  

I also feel a little confused because there’s this Autism Waiver that you should fill out as soon as your child is diagnosed.  The idea behind it is for the state to provide resources/financial aid for services that don’t fall under the public school umbrella or respite services for caregivers who need a break…among many other things.  The craziest part is that once we finally got word that YES, he did in fact fit the criteria for the waiver, now we wait an average of a decade before his name comes up.  That’s shocking for a few different reasons.  #1: There are THAT many people who have applied that it’s going to take YEARS to address everyone’s needs.  #2: There’s not a more efficient way of handling the influx of needs.  #3: we have no idea what life will be like next week, let alone when our son is about to be a teenager.  I am hoping that we won’t need any help by that time, but it’s always good to have a back up plan.  

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