Paper Cuts and Lemon Juice

An interesting write-up, how The Princess Bride can equate to parenting a child with developmental disorders such as ASD or, in our case, Fragile X.

I especially have to be mindful of #8:

There’s not a lot of money in revenge

- Inigo Montoya

Don’t spend your life feeling bitter, blaming yourself, hating autism or resenting parents of typically developing kids. It’s a fruitless and costly waste of energy that can be directed into more productive things.

Admittedly, it's difficult to rein in the snap reaction when well-meaning parents of typically developing kids offer us advice.  They can't possibly have any idea of what this is like, or how much it hurts to hear that our kid is actually that far behind, developmentally, because he hasn't achieved the same milestones as his typical peers.

That's what's going through my head, silently hidden behind the plastic smile with gritted teeth, deliberate eye contact, and strenuously controlled rhythmic breathing.

"Yes, I'm sure he will start talking incessantly soon," I say.

"HOW THE HELL WOULD YOU KNOW THAT HE'S JUST ON THE VERGE OF TALKING WHEN HIS SPEECH PATTERNS ARE THAT OF AN 8-MONTH OLD??!!?" screams my brain.

"He's 20 months?  Oh, it's gotta be tiring trying to chase after him, huh?" says the grocery clerk, sweetly.  "He's a handful!" I say cheerfully but vaguely.

"NO IT REALLY ISN'T THAT TIRING BECAUSE HIS BODY IS BETRAYING HIM BY NOT DEVELOPING THE MUSCULATURE HE NEEDS TO BE ABLE TO SURVIVE ON HIS OWN," my spirit cries.

"Oh, he'll be okay soon!  Hahaha," say my conversation partners who are growing uncomfortable because I'm starting to scratch beneath the superficial and meaningless, and want to change the subject quickly.

"WHAT THE HELL IS 'SOON?'  WE CAN'T EVEN BEGIN TOILET TRAINING BECAUSE HE'S NEITHER WALKING NOR COMMUNICATING COHERENTLY.  DON'T TELL ME HE'LL BE 'OKAY.'  YOU.  DON'T.  KNOW," my desperation scolds.

But again, these are the hair-trigger knee-jerk reactions.  Nobody deserves that.  Not the people with whom I'm speaking, not myself, and definitely not the kids.  The kids don't deserve me giving up like this or giving in to the Dark Side of the Force.

Yes, I'll be frustrated a lot, and I may get frustrated because I'm feeling like I'm being shown my own inadequacies by the parents of typically developing kids who proudly and smugly seem to proclaim that they're all Normal.  Or that it does get exhausting trying to read the tone of the conversation and determine that those who are listening are not prepared enough to deal with everything I want to say, but have to keep bottled up.

But unless someone comes as straight-forward as to call my boy a "retard" directly, then they don't deserve my fury.  They're not doing this out of malice or superiority -- that's my own head filling in these gaps and attempting to rationalize a question that I can't answer.

It's unfair.  It's unproductive.  And ultimately, it's a waste of time.  This is not Ultimate Suffering.  This is not the Fire Swamp.  I can't be in the revenge business for so long that I no longer know what to do with my life.

My kids need a father, my wife needs a husband.  Not Batman (well....maybe that's not entirely a bad thing...).

Post-script:  Then I look at these faces and all becomes right with the world: