Tuesday, July 24, 2012


Sometimes, as Benjamin's mother, I feel as competent as the mother of a kid on the spectrum can be: I can predict what situations and variables of a situation will overstimulate him and cause a meltdown.  I can zero in on those issues, prevent and manage what I can, be prepared with mints and fidget toys and chewy tubes, explain in advance to Ben what might happen and how he should respond, place events and activities on our picture schedule and visual calendar. And it works out.   Ben handles the event successfully, he does not have a meltdown, and we are able to accomplish the task in public at hand.  I breathe a big sigh of relief and can practically feel my Super Mom cape draped around my shoulders as it unfurls in the wind. 

Its not easy to pull off such a feat  A  large portion of my daily life revolves around making preparations to ensure Ben sleeps, eats, has sufficient down time, has been prepared for situations and how he should respond, and is as prepared and able to deal with the world outside of our home as possible.  I live and breathe Asperger's syndrome; at least, it feels that way sometimes.  I make the preparations and do the thinking ahead and the worrying, and I brace myself for dealing with the fallout in case I am wrong

Because, believe me, sometimes I am wrong.  Sometimes I am dead wrong.

Sometimes, I find myself in the middle of Target while my child bites the handle bar of the shopping cart and screams bloody murder because there is not a single male cashier at that store.  And then I find myself peeling my screaming, flailing 49 pound child out of that shopping cart and stuffing him into my car and into his car seat restraints while 6 people stand around and stare at me.  All while I sweat and get a shooting pain beside my eye.  Not one of my finer moments, and ironically, it happened about 45 minutes after an appointment with a child psychiatrist who told me I am doing all the right things except putting him a a weighted compression vest in public situations that might cause distress.  I just ordered one, by the way.

Sure, sometimes, Ben does better than I expected.  And I rejoice on the rare occasions when this occurs.  Unfortunately, and more frequently, sometimes I miss something.  I forget something or make the mistake that Ben has moved  past an issue when he hasn't.  Sometimes, no matter how hard I try, I just can't control everything that needs to be controlled.  Sometimes, despite having a large variety of snacks, that kid won't eat anything when he needs to. Or he won't sleep.  Or a place is louder than I thought or a place is busy when I intentionally went at a time I thought it would not be.  Or there are no male cashiers or waiters.  Or something doesn't go as planned  And sometimes, just like any other kid, he is just irritable or in an uncooperative mood in general, which causes his symptoms to flare even if everything else does happen to go as planned. 

And then there is the meltdown.  There is shrieking, hitting of himself, clawing of his arms or face, kicking, biting, swiping at me or innocent bystanders (nothing makes me want to melt into the ground with shame more than when Ben swipes at someone else), throwing or shoving things off of surfaces.  Etcetera.  Yes, really, etcetera is necessary here.  He is inconsolable and it is almost impossible to get him to hear me explain something to him while he is melting.  He might melt because he is overwhelmed or physically in pain, because noises are too loud or people are too close or he doesn't understand a situation, or there is just a misunderstanding in general that sends his little stressed-out self over the edge.  Etcetera.  But I can't explain those misunderstandings or even remove him from the offensive stimuli because of that meltdown.  It stops us in our tracks and freezes us in a hellish moment that I desperately want to break free of but can't.

So it's not pretty.  It frequently involves me grabbing both hands to prevent swiping, or carrying him (while I still physically can) to prevent kicking, and maneuvering my shrieking, flailing, 49 pound six-year-old outside or to a restroom or to the car. While everyone stares at me, whispers about me, and/or offers unsolicited advice about parenting and laughs about my horrific failures as a mother. 

By the way, perfect strangers who laugh at me and my child or talk about us hatefully, just because Ben is screaming in my ear, it does not mean I can't hear you. And sometimes, secretly, I wish he would kick you. In the face. Or that I could.  ***

Just blogging honestly, people.

This is when I feel that Super Mom cape being ripped off my shoulders.  This is when I feel like a complete and utter failure as a mom and as a person in general.  And after I get Ben calmed down and back in the car, this is when I put my head on my steering wheel and sob.  Or climb into bed and struggle to get myself back out of it.  And I always feel guilty that Ben had a meltdown and screamed or swiped at people, that I felt angry at him for melting despite all my efforts to avoid it, and even that I deep down secretly wished he had kicked the woman who called him a spoiled little jerk in the face.  It's not Ben's fault he has this syndrome. And I suppose it's not that woman's fault she's ignorant and narrow.  I was too before I became a 7th grade teacher and had Ben, though I never would have called anyone's kid a name or laughed at them. 

I know it's not my fault. I know I'm a good mom. I know I'm doing the best I can.  I don't need that kind of reassurance.  That's not the problem. The problem is that THIS IS MY LIFE, and sometimes it makes me feel as helpless as Ben's Asperger's makes him feel.  Sometimes, it just doesn't matter how hard I try or how much I know.   Sometimes, I feel an overwhelming urge to avoid going out in public or taking Ben to new places out of fear of a meltdown. Sometimes, the fear of them is crippling.  And sometimes, I just have to vent.  I don't need reassurance, just a little grace and understanding from time to time.  Sometimes, I handle it gracefully and shrug it off, and that is always my goal, but sometimes I'm that woman crying on her steering wheel or peeling her kid out of the shopping cart and shoving him in the car.

I love my son.  He's sweet, smart, funny, helpful, and precious, and I wouldn't switch kids with anyone. I'm thankful I have him and I can't imagine not having him in my life as my child.  I love my son.

 Asperger's, on the other hand, SUCKS. 

***There are countless people who have not done such things. Many people, strangers and otherwise, have helped me.  Thank you to my family and friends who help me maneuver Ben or simply understand what's up, and thank you to the strangers who have retrieved my paper towels and returned them to my cart or slipped my phone or car keys back into my purse, thoughtfully, silently, and often without the appropriate thanks.