The Short Bus Diaries » Confessions About Life With an Autistic Son

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Fear the Cords

So my son stims.  Your son stims.  Your daughter stims.  The whole autistic world stims.  In fact, I stim (although I’m pretty certain I’m not not or do I run the risk of being diagnosed as autistic – I’m just wacky).  So what’s the big deal?  It’s a stress reliever, it’s a way of shutting out all of that sensory overload, ignoring all of those adults asking you to pick up the red block or put the stupid bead on the string.  It doesn’t hurt anyone.  It feels good.  It’s not illegal.

Some adults have a martini when they get home from work.  Some people smoke.  Some people pound away at the elliptical machine to wash away the day’s tension.

So why can’t my son twist a cord if he wants to?!!!!!

Autism, Autism Parent, Autistic Son, Sensory Processing Disorder

Because it freaks Mommy out, quite frankly.

My son could twist these cords all day long, between eating, sleeping, peeing and humping his lovie.  In fact, I let him do it this past Memorial Day, while we spent our day talking to another couple – whose daughter is autistic – about their in-home ABA / Son-Rise program.  At certain times like these, or when I need to get dinner made / fold laundry / fill-in-the-tedious-but-must-be-done-household-task, I just let him go to town with his cords/extension cords/belts.  I just don’t feel like fighting the fight that I’m not even supposed to fight in the first place, or struggling to engage him an in activity that he will ignore nine times out of ten.

But I really, really, REALLY hate those fucking cords.

I understand that stimming helps him calm his mind.  But it also gives him a reason to shut himself off from the world.

More to the point, it also entertains him.  And it is this aspect of his stimming that really makes my eyebrows twitch.

Honestly though, I don’t know what else to do with him.  When my daughter is otherwise occupied, I have “joined” him in this activity in a combination of Floortime/DIR, Son-Rise methodology, and sheer desperation to engage with him somehow.

And let me tell you, sisters and brothers in the battle for your children’s attention, THIS SHIT IS BORING.  Unbelievably boring.  And he clearly doesn’t want me to interrupt him or play with him.  I suppose the training that I am thinking of attending in a few months will help me figure what the next magical step to take should be after the “joining” bit.  (I should add that I just ordered a bunch of ridiculously expensive teaching tools and am preparing to create a simplified learning environment in our home for some home-based ABA trials.)

But underlying my deep hatred for these cords is a permanent florescent light buzzing of fear.  The truth is that I dread being alone with my son.

There, I said it!

I just don’t know what to do with him.  When I hear that school bus idling outside our house, I know my 6 hours of working peace are over with.  That’s when the time-killing hours between school and bedtime begin. He comes in the house and I have a few non-autism / normal motherly tasks I can accomplish with him right off the bat (feed him a snack, replace his just-in-case pull-up with his Big Boy underwear).  But after that, I am totally lost.

I can throw him into his crash pad, tickle him, put him in his swing, throw him in our make-shift ballpit, set him up in the back yard with the hose (he does love water), or take him to a local splash park and pray that he doesn’t start playing with the draw string of his bathing suit.

But I just don’t know what else to do with him.

And this really makes me feel like a failure.

And it makes me scared for his future.  Because the time period is quickly coming to an end – the one where he he can sit down amid a crowd of crazy 3-4 year olds and zone out with a cord while no one notices or cares.  But a 13 year old who sits in a corner and twists his father’s belt (or a plant leaf, if Mommy has hidden all of the other cords in the house)?  He’s no longer a quirky pre-schooler; he’s that weird kid that will live with his parents his whole life.

And what do we do when the services run out and all of those “Early Childhood Development Specialists” don’t know what to do with a 25, 30, 45…year old who knows how to ask for food and use the potty but not a whole lot else, unless you throw him, squeeze him and bounce him around for 15 minutes first.  Then what?

Sam - May 13, 2013 - 10:25 am

Hi!

Here’s a reader from the Philippines. My son was diagnosed with PDD-NOS when he was 4 years old. He graduated after 1 year of occupational therapy and now appears to be “normal”, we were thinking if his therapist just have us a wrong diagnosis. However these past 2 weeks where he’s mostly idle (no class, no summer activities, no therapist), we’ve noticed that he would stim from time to time (e.g he would draw shapes in the air with his left arm, turn his head to the left) and this freaked us out. However when that SMILE shows up to us, all our worries are gone.

We hope to keep him very busy this summer as we feel like him being idle made things worst for him.

Sam

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