Tuesday, 21 May 2013

You Say You Understand, But ...

Special occaisions can be a challenge for families with autism.  We're planning a birthday party for Alex which will include a magician.  Normally, this wouldn't be much of a pondering situation for a family, unless you had a particularly shy child.

We've warned the magician that he'll need to modify his act.  The majority of children attending will have autism and aren't particularly verbal.  Thus he can't ask "Who wants to come up and help me?" but rather will have to pick a particular child and invite them up.  The kids will be lost during extended patter rather than building up tension.  These are fairly significant challenges but he seems to be confident.

I'm wondering if this confidence is the usual "oh, I understand, I have a kid who is shy/ a picky eater/ easily distracted."  People hear the words but usually don't comprehend the scale of the disaster.

I've mentioned before about how we have a BM-flinging problem.  In fact, last week, we had our ceilings completely ripped down, replastered and painted with the most washable, waterproof paint available on the market.  (Very dusty job but easier clean up will be worth it.)  The contractor had a great deal of trouble understanding that this was an ongoing and frequent problem, not something we had already conquered or a random accident we wanted fixed.

I understand a little, intellectually.  Most people have a great deal of difficulty imagining things they aren't exposed to.  That's why we enjoy biopics and other artistic voyeurism.  But no one is going to make a documentary about BM-flinging.  It's not something that anyone would want to see, even at edgy fringe festivals.

It does end up leaving families feeling even more isolated.  I truly hate when someone tells me they get it when I know they don't.  I only have a few choices in that situation.  I can nod and pretend they're right, which keeps things superficial.  I can try to educate them, which has the downside of turning me into a pedantic lecturer or a one-upping horror show.  Or I can wait until reality shows them the difference and get to enjoy feeling like a freak show.

My life is not typical.  My children are not typical.  And I'm not saying that in an everyone-is-special-and-unique kind of way.  The challenges I have to deal with are not the ones that the majority of families have to deal with.  I'm not trying to put a square peg in a round hole.  I've got the peg but no hole at all in the board.  I have to try and create my holes, often from scratch.

My metaphor got a little more Mike Holmesian than I initially anticipated but it's still valid.  The world is set up to support neurotypical families and their children in all their infinite variation.  It is not set up to support mine.

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