To the People Who Feel Annoyed When We Cancel Plans

Yes.  It has happened again.  We have cancelled or changed plans at the last minute.  And I get that that’s incredibly frustrating for you.  I get that you are disappointed and that our changes directly impact how the rest of your day will go.  I get that this pattern is annoying and that all you see is us willy-nilly discarding yet another time to be with you.  Here’s what you don’t see.

You don’t see how frustrated and annoyed we are.  We don’t like cancelling plans, either.  But, this is our life.  Whether we like it or not, autism and its tendency to overwhelm my daughter affects us every day.  Every week we have events that we have to cancel or change.  And when there’s one more, it is incredibly frustrating.

You don’t see the minutes and hours leading up to the event.  You don’t see just how hard we all try to make it happen.  You don’t see the 501 different strategies we attempt to make it happen.  You don’t see all the effort our whole family exerts to be able to continue with things as planned.  You don’t see the fight we put up before throwing in the towel.

You don’t see the disappointment.  You don’t see the disappointment on my sons’ faces as yet another special occasion is affected by autism.  You don’t see the disappointment on my face as I mentally imagine all the ways I could have handled it differently so that, maybe, we could have been more successful.  You don’t see the disappointment on my daughter’s face.

You don’t see my daughter sitting in the back of the van, crying, out of control, begging for help to re-set so she can still attend.  You don’t see her screaming how much she hates being differently wired.  You don’t see her tears as this thing she’s been looking forward to for weeks slips out of her hands.  You don’t see how hard she’s trying to hold it together so she can tolerate one more exciting thing.

You don’t feel the way my heart rips into pieces as I finally accept that she won’t be able to handle it.  The awful, sinking feeling as I have to be the one to say we’re not going.  The conflict I feel knowing that there’s no good answer.  Either we go and her system becomes even more overloaded and overwhelmed or we don’t go and her system becomes overwhelmed with the disappointment.

You don’t feel the agonizing debate as my husband and I try to determine if this meltdown is simply because of the transition or if this meltdown is a sign of her overall internal state at the moment.  Once we’re on our way will her system reset and be ok?  If we go will she be struggling all night?  Are we setting our daughter up to fail if we go?  If we don’t go?

You don’t see the weeks, days, and hours of work and planning that had gone into preparing for this event.  You don’t see the frustration that the tools and strategies we have spent time discussing and implementing are not sufficient.  You don’t see the feeling of defeat.

So, yes, I can empathize with how annoying it must be that we cannot be counted on.  I can empathize with the frustration of having to change your plans.  But, please remember, there’s a lot you don’t see.